Almost two and a half years ago, I was lost, confused, and didn’t know where or if I’d ever really “fit in” in at work. I’d worked as a youth worker for years, and had also trained as a journalist, and knew that writing was what I was good at, alongside being able to engage with the young people I worked with. Something, I often described as being my “only strength”. I have a strong sense of justice (literal words from an old school report) and so, would fight for the young people I worked with, to ensure they were supported, listened to and that they felt heard. I often felt under-appreciated by managers at work, and if I was given praise, it didn’t seem genuine. What does work mean for my neurodivergent brain I asked myself? I never found the answer. Until I did. I changed jobs in 2022, and physically felt the anxiety I had inside me from previous workplaces , relax. Almost as if it said, “You’re good now, My job is done. I think you’re going to like it here”. It was a strange feeling. Is this real? When is it going to go wrong? So far, it hasn’t gone wrong, although trauma responses still make me wait for the failure that I am sure is imminent, and will strike at any moment.
One evening, I was chatting to my best friend on the phone, and telling her all about my new job and how happy I felt there. “It’s just amazing, there’s this, this and this…” I shared, as I talked through what I later realised is what workplace inclusion feels like. There was silence. And then she said:
“Alice, that’s what a good workplace is meant to be like, I can’t believe you’ve never experienced that before. And it’s really sad you haven’t”
Those words stayed with me. I was 33 and I didn’t know what inclusion or feeling accepted at work was, when it was literally smacking me in the face. Sadly, it’s far too common for neurodivergent people to never experience workplace inclusion and acceptance. Many of us don’t feel valued by an employer. And many more won’t dare disclose for fear of discrimination, prejudice and bullying. I know this worry all too well, having experienced workplace bullying as an adult in more than one job, but at the time I couldn’t bring myself to call it bullying, the same breed of what I’d experienced on the school playground over 20 years ago. In typical Alice style, I wondered what I could do with this new found knowledge. I suddenly felt happier and more settled at work. I wanted to share this. So, I sat down and wrote a book about it, and the words almost fell out onto the page. I wrote about previous workplace trauma, and importantly what inclusion should look and feel like for ND folk. I shared what psychological safety means, how to create community and sense of belonging, and the tools for building and designing a workplace where we (whatever our differences) feel comfortable being ourselves in. Life is too short to be worrying about where we spend the most of our time, and to be constantly counting down to 5pm on a Friday. I wanted my book to be a source of hope for the neurodivergent community, an aid to advise employers to improve practices, and a guide that uses my experience to show others that there can be an alternative, and it is possible for people with a neurodivergent brain who may think differently; to feel cared for, included and appreciated at work. I wrote this book for all of you, who either love a neurodivergent brain, employ one or are one yourselves.
I am delighted to share that with the support from the wonderful people at Cherish Editions and Literally PR my book has now reached the stage of publication, and will be out in the world on the 25th April 2024, both as an e-book and print edition.
To celebrate the release of my book, I’m hosting an online launch, where you are invited to join me to celebrate one of the biggest achievements of my life. Feel free to bring a drink, snacks, pets (especially cats) or children along too. I’ll share more on why I wrote the book, what i’ve learned writing it and will thank a few people who have supported me along the way. I might even share a reading from some of my favourite sections of the book. There will also be a Q&A session where you can ask questions, so do have a think and even better if you can send them to me in advance. Writing a book is an achievement, and it would mean the world to mark it with the people who have followed and supported my writing over many years.
I’d like to leave you with this, and exerpt from my book, that summarises perfectly why seeing my words in print means so much to me:
“Neurodivergence is complicated, and every ND person is different, with individual needs when at work. The time, care and understanding shown towards any employee with differences can be life-changing. When I was new to the world of work, I feared speaking honestly, as I was so worried someone would use it against me, and I didn’t disclose because negative stereotypes taught me that having a disability made a person weak and incapable. I didn’t want to be any of these things. Now, with more experience and understanding of my neurodivergence, I disclose on application forms, drop a load of papers all over the floor when I first meet people and explain honestly what my neurodivergent brain needs from a line manager in the middle of an interview. I’m a world away from the trauma I’ve experienced previously and more accepting of my differences. Being in this space has given me the permission to reflect on the dreaming I did years ago, when I always believed I was destined to be my own advocate, fighting for “reasonable adjustments” to make those simple things I shared at the beginning of this book easier. But actually, I don’t need to anymore – although memories of previous workplaces still haunt me and I often still question myself. I can let the guard down slightly now, knowing there are places out there that are built to include, value, accept and love us. And we can be who we are at work, who we always will be.”
Alice Hewson, Neurodiversity in the Workplace
That school girl who had extra time in exams, endless school reviews that focussed on everything she found hard and a statement for Special Educational Needs, would have never imagined that one day she’d write and publish a book. So this really is very special.
You can pre-order “Neurodiversity in the Workplace: How to create an inclusive and safe environment here. You can also find more about the book, my writing or possible future events on my website: alicehewson.com. Please do share with anyone who may be interested, and I can’t wait for my words to finally be in the hands of readers, and to celebrate with some of you on Thursday!
It took me until I was 33 to truly feel happy at work. To finally find a belonging, an employer that felt safe and a line manager who could support me to grow.
I was years into my working life until I found this belonging, acceptance and feeling of being happy at work. Let’s just reflect on this for a moment. It took me twelve years of bad practice, unsupportive managers and psychologically unsafe environments, to then change jobs and experience the opposite. It was only last year when I finally understood what a good workplace should feel like. How colleagues should behave towards you and that work should be a positive place to be. I now understand what inclusion and equity really mean.
Have you ever felt happy at work? What does happiness in a workplace even mean or look like to you?
Some people never get there. They will never feel happy in the work they do, and this breaks my heart. Feeling unhappy, stressed or burnt out at work should not be the accepted norm in 2023. Yet for so many workers, this is their reality. And for neurodivergent folk having to fight to feel included at work is often the norm.
In the Business in the Community report, “what if your job was good for you?” it was cited that only 56% of employees felt comfortable talking to their line manager about mental health such as anxiety and depression, and only 38% felt that their managers have the confidence to have sensitive discussions and to signpost to help if needed. This is terrifying.
This week marks the start of International Week of Happiness at Work, a time for organisations, managers, employers and employees around the world to pause and reflect on their own workplace happiness and ways we can design workplaces to promote employee well-being. Research shows that when people are happy in their job, productivity increases, it improves staff retention and reduces time off for work-related stress and burnout. After writing a book about neurodivergent inclusion at work, due to be published by Cherish Editions at Trigger Publishing early next year, I’ve considered, and probably more extensively than I have ever before, what it means to finally feel happy at work, ways to build psychological safety into our workplaces and how we can learn from systems change and co-design approaches to make work a better place to be for everyone. I know that when ensuring neurodivergent folk feel happy and supported, universal design, systemic inclusion and creating a safe environment where difference is accepted and celebrated is important, and vital for us to A) want to stay in a job and B) bring our best, authentic selves to work,
The process of writing my book has taught me a great deal about myself, and the world around me. As I’ve written, I’ve reflected on previous workplace experiences, my understanding of my own neurodivergent identity and considered my current job and how things have changed. My employer has taught me what a good workplace looks like, how it feels to be managed well, and why what I experienced before was not the way it was supposed to be. We spend a lot of our lives in the office, on zoom calls and at work, with colleagues, customers, clients, or patients and with those who manage us. Our routine is dictated by the workday, and life is often built around our careers and aspirations for the future. As children we dream about the job we will have when we’re older, an entirely positive dream, often depicting achievements, success, happiness and pride. And when we do enter the world of work, we spend so much time there, but often our reality doesn’t mirror the image of our future in that childhood dream. We’re supposed to enjoy and be happy while at work, yet many of us experience the opposite. Work should not make us feel afraid, anxious, or ashamed. And a line manager is not meant to ignore you or not meet your needs. Colleagues are not meant to bully you. These things – often resulting in trauma – are not normal. It is not okay for a workplace, wherever we work, to make us feel like this. That our contributions aren’t valued, and our differences are the problem.
We need more leaders and managers who can recognise everyone’s value, to go beyond the bare minimum to support and help us grow. To know that to really make systemic inclusion possible, reasonable adjustments are not enough. We need people at the top of organisations who know that a happy workplace based on the principles of psychological safety is the way forward, and the way for organisations to truly grow and develop is to adopt this safety in practice and culture. Moving beyond the traditional way of working and doing things because of the generic responses of ‘it’s always the way things are done around here’ will create healthier workplaces for everyone’s wellbeing, so we can all finally bring our authentic true selves to work. And of course experience some degree of workplace happieness. As at the end of the day, we spend far too much time at work for our biggest dream to be 5pm on a Friday.
It Is now time for deeper organisational change in workplaces, beyond the online campaigns, and people talking about it. It’s great that we’re all talking more and feeling comfortable being vulnerable in ways that didn’t seem possible before, but now we’re here, we must translate that talking into action. My book has the subtitle; “Finding the words and exploring the actions for psychologically safe environments”, because without action, our words have no meaning. After this week is over, we must continue to strive to make the workplace a good place to be everyday of the year.
We have seen since the Covid-19 pandemic, when people had no option but to work from home, an adjustment many disabled people have requested and been denied in the past, that it is possible to be accessible and to provide things that were once unheard of as a possibility. Now more people are working from home, and many neurodivergent people are feeling happier and less overwhelmed as a result. We have seen that it works as a model and does not limit productivity as was once feared. We can all develop and learn from this.
My own understanding has grown, I know things now that I wish were discussed with me when I first started navigating how my neurodivergent brain would fit in at work, and the barriers I would then go onto face. I have learned to avoid justifying or explaining myself too much to other people, or apologising for things that are directly linked to my neurodivergence. Women are conditioned to say sorry far too often and for things that are not worthy of an apology or admission that it is your fault, and I’m trying to move away from this narrative. Instead, I want to own my differences and be realistic about the challenges too. I especially don’t need to apologise for the way I think or process information to fit in. Or made to feel bad or unhappy about this reality. A reality that is part of me, and will never change, no matter how much an employer wants me to. I hope that this blog post, the inclusion at work guide I wrote earlier this year, and my book is picked up not just by ND people looking to hear a story from someone with similar experiences, but by managers and employers too. I say there must be change, but this should never come solely from people negatively affected by the reality, whether this is unhappiness at work, not being included or discrimination. This is because:
The onus should never be on the neurodivergent person to advocate and “explain”. We don’t need to change or do ‘anything’. We are not the problem.
The responsibility lies with the employer and line manager to make a workplace neurodivergent inclusive, and to promote happiness and belonging for everyone. Whilst also recognising that being unhappy or vulnerable at times is not a weakness of the employee.
Neurodivergence is complicated and every ND person is different, with individual needs when at work. The time, care and understanding shown towards any employee with differences can be life changing. When I was new to the world of work, I feared speaking honestly as I was so worried someone would use it against me, and I didn’t disclose because negative stereotypes taught me that having a disability made you weak and incapable. I didn’t want to be any of these things. Now with more experience and understanding of my neurodivergence; I disclose on application forms, drop a load of papers all over the floor when I first meet people and explain honestly what my neurodivergent brain needs from a line manager in the middle of an interview. I’m a world away from the trauma I’ve experienced previously, and more accepting of my differences. Being in this space has given me the permission to reflect on the dreaming I did years ago, when I always believed I was destined to be my own advocate, fighting for “reasonable adjustments” to make those simple things that seemed overwhelming, easier. But actually, I don’t need to anymore – although memories of previous workplaces still haunt me and I often still question myself – I can let the guard down slightly now, knowing there are places out there that are built to include, value, accept and love us. And we can be who we are at work, who we always will be.
Over the last few weeks I’ve been reflecting a lot on what exactly inclusion means, and more specifically how I’ve felt when my ADHD and dyspraxic self have been part of something and I’ve been valued. And the comparison when this hasn’t happened. This isn’t just indicative of work, but everywhere. Socially. In the community. In education. Accessing services. And of course at work. Inclusion is, and should be a fundamental part of life. Although it isn’t, and we know from hearing lived experiences, that it really isn’t top of everyone’s agenda. When I was younger and going through education (and several degrees to try and figure myself out), I assumed, like many of us do, that to be included I had to ask for something or be accommodated in some way. We’re taught to believe that our brains aren’t built to fit in with everyone else. In school we ask for extra time in exams, tuition if we need it, annual reviews to asses our needs. I now realise that all of this stuff, although support offered by schools is often very minimal, is not inclusion. At university, I didn’t ask for any support, disabled students allowance is available for some, but after the messaging of “not fitting in” at school I didn’t want anything else to make me appear different. This “you don’t fit” and “we have to accommodate you if there’s enough time/money/resources” rhetoric is damaging. Constant messaging about not being good enough or failing as a teenager and then an adult has an impact long after events take place. It’s no different in the community, after complaining when it was indiscreetly announced to a busy Boots that my ADHD medication is a “controlled drug,” a pharmacist recently suggested that I ask to speak in a private room to pay for my ADHD medication, if I’m “not comfortable” doing so over the counter. She missed the point. It’s not about my own internal stigma of the medication I take to make my brain function, it’s about her staff responding in a way that doesn’t single me out or disclose confidential medical information to strangers, making me feel different & judged for a diagnosis they know little about. It all comes down to the training of public facing professions, which is very much on them to learn, and not me to educate. Similarly I’ve heard stories and experienced myself of people who appear a little bit anxious or different being followed around shops by security guards, or stopped at entrances and asked to produce receipts. I’m sure you can see a pattern of the negative messaging we experience everywhere, support based on assumptions, judgements made and feeling accepted being challenging. This led to me regularly giving up trying to attend social events because I worried about being a burden on my friends. I would rather they had a good time or enjoyed themselves without me there, and resolved that they would be better off that way. I experienced a lot of panic attacks when I was younger too (they are pretty much non-existant these days), so spoiling someones night because I have to leave early or simply that I’m not fun to be around because I’m an anxious mess, felt like a step too far. I was rarely worried about the anxiety itself, but mostly concerned about the affect it would have on other people and not myself. Again harping back to negative messaging of inclusion and the early days of school when I first recognised being ‘different’.
Recently I had Covid over Christmas, and this led to a lot of time in my own head thinking, and resulted in channelling my hyperfocus to write a whole supporting neurodivergence at work guide, I need to find a suitable home for this but until then I’ve shared a link at the end of this blog post. It’s more useful here than sitting on my laptop not being read. If anything my productivity and focus on creating something useful is evidence that self isolation and ADHD really do not mix. Or they really do, depending on your perspective. If anything I was very much on brand for much of December (in between the coughing!).
The reading I’ve done while writing this guide, has lead me to the same conclusion; that we’re really not thinking as deep as we should be when it comes to including neurodivergent folk. I focussed on work, but if we start embedding different practices at work, I’m sure they can be translated into other parts of our lives too. We’re barely scratching the surface about what we could do for neurodivergent workers. If you google “neurodiversity in the workplace’ you’ll find well meaning articles, often by organisations and not always speaking from lived experiences, talking about adjusting lighting and the environment for those with sensory needs, or allowing neurodivergent people to wear headphones. Or offering quiet spaces to work to avoid distractions. My own access to work report from my last employer echoes this. I was offered assistive software and a timer. Software that I rarely used and the timer has never worked. Being provided with a timer won’t help any time management issues I have, when my executive function difficulties mean I forget it exists in the first place. Crucially the fundamentals of inclusion are not being addressed, if despite all of this practical support and equipment, I’m still in a workplace where I don’t feel valued, with a manager who isn’t understanding or willing to learn about what I need. While reasonable adjustments, if they aren’t blanket chuck loads of software or equipment at you, are important for employers at the start of their inclusion journey, the conversation shouldn’t end there. We need to dig deeper. Go further. Reflect more. To truly help everyone understand what neurodivergent people need. Both at work and beyond. And it shouldn’t just be us starting the conversation. To feel included we need others to be invested in our interests too. Wanting to learn. And listening to our stories.
We need to start talking more about how we can feel psychologically safe at work.
How can we feel comfortable communicating our needs, preferences and support that would be helpful to our team? When can we feel safe in a space to know we can call something out if it isn’t okay, and not fear our jobs? How can we feel happier? Workplace inclusion and accessibility issues can not be addressed or solved, if the workplace is not a psychologically safe place to be. Offices are typically designed for neurotypical people, and ND brains often miss out on opportunities or progression as work doesn’t feel safe, either because of a toxic work culture or because of expectations assuming who you must be to fit in specific professions. Universal neurodivergent design and a welcoming atmosphere where we feel able to be ourselves can help us feel included and psychologically safe at work. Feeling psychologically safe to me means;
Being able to be honest, open and not feeling judged
Being listened to and actions put into place resulting from any suggestions
Managers asking what I need or don’t need. Before assuming.
Feeling that my contributions, experiences and ideas are valued.
Reasonable adjustments and special changes to how an organisation usually does things does not make me feel psychologically safe or a real part of a team. But how can psychological safety become part of day to day work conversations and how can we embed this dialogue?
Attitude
The first thing before any of the others, and even the reasonable adjustments is the attitude of a workplace. You have to portray that you really want to be inclusive for me to feel safe. A lot of organisations state that their practices are inclusive, but then their actions tell a different story. The attitude starts at senior management, demonstrated in job ads and at interviews and filters down to all employees. If you’re really invested in inclusion, it shows.
Systemic inclusion to benefit everyone
Systemic inclusion is simply put, universal design. Making your workplace accessible and inclusive of neurodivergent and disabled people, whether you know they work for you or not. Everybody benefits from a diverse and inclusive workplace culture, your productivity, creativity and even finances develop when you attract and maintain different skills, abilities, lived experience and talent. To put systemic inclusion and universal design into context, providing a lift is vital for wheelchair users accessing an office, but everyone benefits from having a lift installed. You don’t just build a build a lift when a wheelchair user joins your company or organisation. Similarly having quiet spaces to work helps people with ADHD to avoid distractions and be their most productive, but everyone benefits from a quiet space from time to time; if we’re having a difficult day, feel all peopled out or need to focus on a deadline, dopamine deficiency or not; we all benefit. The key is not having to ask for these things because they are already built into the workplace design.
Understanding toxic work culture and creating cultural change in organisations
I didn’t know how to phrase this but saying it how it is seems best. Toxic work culture exists in so many work environments, often for years and even decades there is a sense of “this is how we do things here,” and people who have held a certain degree of power for a while, refusing any cultural change. Or even being open to conversations about change. It’s very hard (and even impossible) to put things in place for a psychologically safe environment, when the culture is toxic. I’ve been in situations when not replying to a message quick enough was used to question my commitment. And other times I’ve relied so much on a supervisor for advice and support, that ultimately led to an unhealthy relationship, and almost failing a degree (another piece for another day.) Both of these were toxic, and detrimental to my mental health, more so than I wanted to admit at the time. When employers seek to understand that toxic work cultures exists rather than running away from the issue, and begin creating cultural change, we can really move towards inclusion and an environment where we feel safe. Safe spaces can’t exist in toxic, unhealthy and constrictive environments.
Training for managers
Above all workplace training for management, line managers and other employees in your organisation should include how to practice systemic inclusion, practicing cultural change and the difference a welcoming workplace can have. Training should include understanding neurodivergence, but not blanket assumptions or definitions. If management are trained on how to promote psychologically safe environments, the importance of developing safety plans and ways they can improve staff wellbeing, not just for neurodivergent employees but everyone, we can then truly begin supporting, understanding and accepting of differences at work. Differences that don’t just include neurodivergence.
It isn’t about getting it right all of the time. Getting it wrong is how we get it right
I hear more than I should, people being concerned about getting inclusion wrong, saying the wrong thing, or unintentionally being discriminatory. We can’t get everything right all of the time and when we’re learning, we generally don’t. It’s about understanding the basics (through training, workplace culture and systemic inclusion) and then adapting to people’s needs as you go. A new neurodivergent person on your team will give you further opportunities to learn and reflect together about how you can make things better for them. If you’re not open to learning and getting it wrong some of the time, you’re not going to learn how to get it right.
Communicating needs and preferences to a team.
When all of the above become second nature and normal in a workplace, we can then begin to feel comfortable dictating our own care, and what works specifically for us and our brain. Previously, and not just in work environments, I haven’t felt able to do this because I didn’t feel I’d be listened to. The first time I experienced what listening truly meant, was when a youth worker let me have a go, and didn’t focus on me not being able to do something. Instead she said; “you can, and I’m here to support you,” and in that moment, that’s all I needed to hear. That my contributions and opinions are valued. Since then I have not stopped having an opinion, and speaking out for things that aren’t right or fair or just. My GCSE history teacher (hi as I know you sometimes read this!) saying in a school report that I have an “innate sense of justice and fairness” really did have a point. I’ve experienced a lot of good, supportive people alongside the unhelpful and trauma inducing ones, to develop a clear understanding of what should and shouldn’t happen at work, at school and everywhere else inclusion is necessary. A lot of how I’ve felt, can be explained by how comfortable I’ve felt communicating my needs. When a dialogue is created to do this, I thrive. When it isn’t, I internalise a constant sense of failure and not being good enough for the system. And if that’s my experience, I know it is close to other people’s too.
I feel psychologically safe when people appreciate and accept me
Inclusion isn’t a complicated concept; it’s making an environment accessible to everyone so we all benefit, but why do so many workplaces and other systems get it so wrong? Why are unions needed to fight discrimination? Why don’t people get that difference is a good thing, and adds value? Why is writing this piece even necessary? We need this conversation because evidently we still have a long way to go, to get to a stage where questioning if it’s the right decision to disclose isn’t a thing and work & education becomes safe for everyone. You’re going to get the best from me when you appreciate and accept me. I don’t need anything drastically different to the next person, I just need you to have the right attitude. We began with attitude, and we’ll end here. If your attitude is in the right place, and not just your heart without the actions, we can really begin to work on making systemic inclusion the norm.
We need to look deeper into inclusion, beyond reasonable adjustments and anything practical. It’s about getting to the heart of the values, ethos, practices and culture, to really understand if work is a psychologically safe place to be. And then if it isn’t, make changes that matter so we all want to be there.
As I mentioned at the start of this blog post, I’ve written a guide for workplaces, exploring inclusion further, that I’m sharing here. Feel free to use, download and let me know if it’s helpful. It’s written as a guide, whilst also sharing some lived experiences too. I hope it can at least help to generate some conversations.
channeling thoughts about why you could be the change a young person needs…
(This piece was originally published on Medium in 2020. I’ve updated it slightly to link to current times, and reposting here… )
I qualified as a youth worker in 2013 and prior to this like most people I had quite a lot of experience being a young person, and knowing what it feels like to be and not be listened to. Since I qualified, youth work has become more and more devalued, where underpaid positions are the norm and not the exception. We are in a world where the profession I trained for really isn’t being recognised for the lives it can change, or for the impact of meeting ‘that youth worker’ who makes a difference. During my Youth and Community MA, I had the pleasure of studying with a pretty musical bunch, and when we realised we had fiddlers, pianists, singers and guitarists among us, we wrote a campaigning song against the cuts to the youth services, news that dominated much of our reading at the time. We saw provision we all treasured in a not too distant past as mostly women in our 20’s and 30’s, being ripped away before our eyes. We were going into a profession with the feeling of being surrounded by politicians telling us that our jobs didn’t matter. What we were training for wasn’t important. And most devastating of all that the development of young people through lifelong relationships built through youth work wasn’t a priority on the political agenda. This was of course before more Tory years, before Corbyn trying to carve a better world, before Brexit and long before a global pandemic became our reality, and when youth workers suddenly became needed more than ever.
I trained as a face to face worker, it’s what I’m good at. Talking to young people. Listening to their stories. And learning. I later trained as a journalist because I wanted to tell these stories in a different way. Young people were constantly teaching me, and that’s what I loved most about working directly with young people. Different workplaces and university placements also taught me too, and made me a better advocate for myself and what I need. At university we studied group work, informal education and participation models. I had ingrained in me, long before that training, from my own youth workers, about the importance of actually listening to young people and making them feel heard. Making their voice really count. Listening to young people is instrumental in helping them to feel valued as an adult, that no matter what system or situation they find themselves in, that their voice matters.
I will always remember the day when I told my youth worker I wanted to deliver a training session to the group of young people. Not a bizarre request, you say? It wouldn’t have been, if I wasn’t a shy, quiet teenager who was ridden with anxiety. I barely spoke a word because I didn’t believe I’d be listened to or that what I had to say was important. No one had ever given me the time to actually be heard before. Not tokenistic listening, when organisations say they consult with young people to go through the motions, but don’t open their ears. Actual listening. I didn’t know what that felt like.
But then the day came when I felt heard for the first time.
Me: “Would it be okay if I run this next one…?”
Youth worker: “Yes of course you CAN.”
She didn’t know what to expect but there was no hesitation in those words. She knew I was worth more than just a chance. She saw something in me, no one else saw. I go into this in detail elsewhere but being labelled as SEN from a young age and being pigeon holed into boxes` isn’t great for your self esteem or wellbeing, especially when you’re often not given the tools to understand what this means as a teenager and then later for your life as an adult. The messaging tells you that you’re different and you don’t fit, and learning there’s more to this is hard to see without a tiny bit of guidance. Diagnostic reports or PIP assessments often scream how your differences are defined, but very rarely highlight what you can achieve.
So back to the youth session. In this moment, after asking that simple question, I was told I can. And that was all I really needed to hear. Since then they discovered my almost natural ability to stand up in front of a room of people to speak with confidence and conviction. My double act age 16 with the Director of Education at the time who then became Children’s Commissioner for England several years later, is one of my favourite moments.
“From now on you can deliver more sessions,” she said.
Young people want to feel listened to. Understood. Cared for. And acknowledged. Adults aren’t much different. We want a place at work, at home and in our community, where we can fit in, and belong. A place to feel part of something. Our experiences as young people, and the adults we have in our lives, often influence how we respond to the world as adults. Of course other lived experiences and trauma have a part to play too. It’s about how well we’re equipped to deal with this, and the bank of resources we’ve developed throughout our lived experiences, starting from when we’re young.
Youth work training teaches us the importance of having difficult conversations. Having that chat. Trying to “get it”. Does the young person in your life know they matter? You may not be a youth worker by profession, but you will likely know a young person, whether it is a relative or neighbour, who needs to hear that their views are worth listening to. Principles of participation teach us about allowing that space to explore and debate, eventually leading to youth led decision making, and gaining ownership of those decisions. At the heart of this model is listening. If we don’t feel heard it’s challenging to believe that we can be part of decision making that really matters.
In 2020 a global pandemic hit us, without a section of society who hasn’t been affected in some way, although as always disadvantaged families are often worse off. And we’ll only really understand the trauma we’ve all collectively experienced in years to come. If Covid-19 taught me anything, apart from that I didn’t realise how much I’d miss hugging my friends until it had been taken away, it’s that youth work changed. The way we deliver work with young people may never be the same again, and that it will take time for youth workers and young people to recover from what they’ve experienced. I say this in 2022 still being able to vividly recall conversations I had with young people in the middle of the first lockdown, that I never thought I would have in my job. During Covid I worked with young carers; young people who were caring for a parent, sibling or other family member with a disability, mental illness or substance misuse. I literally transformed over night from a youth worker facilitating social action projects aimed at developing a platform to share young carers stories, to a crisis worker. I was not prepared for this transformation and on reflection youth workers were not supported as much as they should have been during the height of the pandemic, when we were suddenly faced with the daunting prospect of literally keeping these young people and their families alive and emotionally well. I was supporting families who were struggling to have their basic needs met. Families who relied on food parcels to ensure food was on the table, and even then this wasn’t always enough. Young carers who had to write to their MP to put pressure on local supermarkets to be considered as “priority” for the quieter shopping hours. Young people who struggled with homeschooling because they only had one laptop between four children. Some of our young people had to do all of their online lessons on a mobile phone. Some had no access to internet at all. Single parents who had no support. There were families who were struggling to keep all four children of different ages entertained. And others who really needed more than an hour a day to take their autistic children outside. And most of all these children and young people were terrified for their families health, more so than they had ever been. I dealt with and supported other people through their trauma, without even considering my own. And how as a youth worker, although I wasn’t a key worker working on Covid wards, this sudden situation of being surrounded by crisis was affecting me.
I once asked a group of young people over a zoom call when they thought the Pandemic would end, one of them looked at me despondently and said: “never, it will always be like this.” And another shook her head and replied firmly: “No it will end in 2050.” They had concluded that their childhood had changed forever, and to me this was devastating to hear. It’s hard not to shed a tear when you know young people were really being hit hard and there’s very little you can do about it, other than quite literally, keeping them going with online zoom sessions, checking in over text and maintaining some level of stability. And that’s what I did. I was there. I made sure that the young people who I worked with were my priority, and longed to see them face to face again. So we could play daft games again, they could laugh at my latest cat stories and we could share reflections about the week. As I waited for that day I offered emotional support. Practical solutions and advice when needed. And some kind of normality and familiarity in my weekly zoom sessions.
Youth workers really were holding up the families struggling the most, while the rest of the world argued about wearing face masks, not being able to go on holiday and shouting at politicians during daily briefings, youth workers were solving the problems often hidden from view. While schools closed for six weeks, we were all of the support some young people had. When all of my work turned virtual, I put young people forward to receive laptops so they actually had a fighting chance in our ever changing digital world, I applied for funding for bikes so young carers could get outside in the fresh air and have a break from their caring responsibilities at home. And most of all I became an immediate source of crisis support for struggling families. Panic buying made the challenges of those who already struggle to put food on the table increase ten fold. I contacted organisations for emergency food parcels. Made sure I checked in with young people. I made it my priority to listen to how the young people were feeling. I texted if video chat felt like a step too far. I was always there. When many organisations, schools and services closed their doors or were furloughed, we remained open and able to react to anything that came our way. It wasn’t just me who did this, I worked with a whole team of colleagues, some with backgrounds in youth work and social work. And I know up and down the country youth workers did exactly the same, recognising a crisis and responding to the ever changing needs. The pandemic wasn’t predictable, or the length of time we’d be shut away from the world unable to see our young people face to face, so life two years on from that first lockdown certainly isn’t. Youth workers who’s jobs were once being cut and told they’re not worth reasonable pay, suddenly became the back bone of society, and now continue to support young people to unpack trauma following the pandemic and current cost of living crisis.
Youth workers are the support young people need, in a time when many young people’s mental health has been exacerbated by the effects of Covid. A profession that really needs to be recognised for being on the frontline of the pandemic. Demonstrating the impact youth work can have.
As a young person who struggled with my mental health, and now as an adult who continues to do so, being involved in conversations about services I receive and knowing my views are important is where I have seen the most powerful change in myself, and in those around me too. If I was able to recreate at least half of that feeling for the young people I worked with, I’ll know I’ve made it in becoming the kind of youth worker, who changed my life eighteen years ago, by laying out the tools to believe I can.
The pandemic has changed most of our lives for good and shaped how we now view the world we all share, but for youth work, this change is only just beginning, and will continue for years to come.
Listening not only changes lives, but it saves lives. And best of all, it’s free! Showing a young person that they matter, will help them recognise how, why and where they matter and belong as an adult too.
This messaging really is important. You could be that change.
I’ve been reflecting a lot recently about careers, ambitions, progression and the goals we all set ourselves, whether intentionally or not. I’ve written about finding an inclusive workplace and the difference it makes when everything feels more accessible. I’m pretty open online and in writing about my ADHD & Dyspraxia these days, but despite years of shouting about this stuff, leading workshops, writing letters to anyone who would listen and speaking on several live radio programmes, sometimes neurodiversity doesn’t feel a comfortable topic of conversation. And rightly so, the first rule of sharing anything personal whether online or in person, is that you don’t owe anyone all of you. You can choose which bits of your story to share. And why. The why is important. I often ask myself in the comms I produce at work; why am I sharing this? Why does it matter? Why should people know? Asking yourself why helps to frame whether it is relevant right now, or if it can wait. And to judge if it needs to be shared at all. When it comes to sharing in a context that is not the communications of a charity, we need to first be honest with ourselves before we can begin to trust and be honest with other people. And we need to be in an environment that cultivates and allows this honesty.
It is only now that I am in a place where I feel listened to and accepted at work, that I can put together some thoughts about why it is so hard to vocalise how we feel in the workplace and to start those conversations about the barriers we might face. These barriers are often the assumed ‘easy tasks,’ resulting in years of workplace trauma and a feeling of “I’m just not good enough to be here.” If you don’t feel good enough, the last thing you’ll want to do is be honest about your vulnerabilities and the idiosyncrasies of your brain.
But why can’t I just do that thing?
The perceived simple tasks can be as everyday as struggling to find your way around a building you’ve been to many times before. Or having to rely on google maps so much for routes you do regularly rather than trusting your brain, to be taken the long way round with no understanding of how to get off the scenic route. Google maps makes you late for a meeting, again. Other days before work you worry about finding your way to a new place more than the work itself, so you overcompensate by setting off several hours ahead of when you need to, only to make yourself exhausted.
It can be forgetting your keys when you’re in charge of locking up after a youth session at night, and failing to remember to text on call to say you’ve arrived home safely, triggering phone calls from annoyed managers who want to sign off for the night, then eventually the police. Sometimes when you’re not forgetting things, you’re asking a lot of questions to help you process information and give you the reassurance you need, this leads to your colleagues misreading you as being difficult, and managers questioning your ability to cope.
During an induction for one job you take notes but because of the time it takes to process new information, your notes make no sense and you fail to turn up to a meeting the next day; a meeting you were explicitly told to make a note of. Or you put the wrong date in your calendar and turn up early or late. Sometimes you don’t get paid for your 0 hours sessional work because you didn’t get your timesheet in on time, and no one offers accountability to support with challenging admin tasks.
Sometimes you loose focus and struggle to know what to prioritise and so miss your deadlines, or end up hyperfocussing and working over your hours to get things finished. You regularly spend longer than you should on a piece of work because you can’t judge how long it will take you to finish without a clear structure and deadlines. Other days you feel so overwhelmed by a busy noisy office, that you need time away on your own; this makes people assume you are being rude or unsociable. Most days though, the practical tasks are challenging, and you fear the tea run and your clumsiness making you spill it everywhere, adding further to any social awkwardness and appearing incompetent. Your colleagues don’t understand why you never offer to make the tea for everyone when you head towards the kettle, it becomes a topic of office banter. When working in a school you are told to organise a crochet club for 7 year olds. Your lack of fine motor skills and dexterity makes you pretty much a spare part during this session. Another day you’re asked to get a 5 year old to rub out a drawing he had worked hard on, this triggers memories of your own school experiences and you walk out in tears. You are pulled up for questioning your manager and not doing as she had asked. In youth sessions you hope there isn’t any activities that involve ball games.
On other occasions colleagues shout at you for getting things wrong, managers will try to get you to talk it out as if they’re dealing with some playground argument. One time you’re sent to mediation with a colleague, where she proceeds to spend the hour telling you how awful you are, and what this has done to her. On other days an activity you had planned for young people is sabotaged by colleagues who don’t like your way of doing things. You’ve been told you can’t be this, you shouldn’t do that, your Myers Briggs personality doesn’t fit. Concerns have been raised about your personality by more than one manager, in more than one workplace. You’re shamed for not disclosing your dyspraxia sooner. You feel uncomfortable now they know. You confide in a supervisor who appears to know it all; you look at her to guide you, you want to be more like her and less like yourself. She takes advantage of your caring nature and apparent vulnerabilities. You’re told you are not at a level where you can have a say or should worry about strategic thinking, you believe you will never be at a level to be listened to at work. Your anxiety makes you believe that you shouldn’t be there. You stop contributing in meetings and avoid talking to colleagues more than you need to. Sometimes you’re so terrified of saying or doing the wrong thing that you physically can’t speak. You try to make yourself invisible.
Can you see how all of this forming part of your early career story can be exhausting? Some often, others happening once is enough to be bring back difficult memories. All of these scenarios (and more that I’m unable to talk about publicly) have happened to me at work or on university placements over the last decade.
Time, trust and power
I have spent the last few years trying to navigate adulthood, careers, ambitions, who I want to be and where I want to go. Whilst also trying to understand how and why my neurodivergent brain should be accommodated, and dreaming of a reality where that isn’t a question to ask anymore. Those are heavy questions for a 20 something when I first started out on this journey, partly because there’s still so much internal bias, stigma and prejudices within systems, and secondly because exposing your vulnerabilities is hard. It’s especially tough when we’re first starting to build a career. I didn’t disclose my dyspraxia (ADHD diagnosis came later so that wasn’t an option) when I was very young because I didn’t want it to disadvantage me. I didn’t want my neurodivrgence to affect any opportunities or future career prospects. And most of all I didn’t want to appear different. I say this now with a deeper understanding of the disadvantages I faced at work simply because I was in an environment that was not built to include me. Just writing that sentence breaks my heart, knowing I had to experience all of that to truly value the place I am in now.
Starting these conversations is hard, and when we finally do find a way in to bring it up, the lack of mainstream understanding of dyspraxia and particularly inattentive ADHD means that to get adjustments or a system that is built to include us, we must become an educator first. Most of us don’t want to do this, or aren’t ready to take on this heavy and draining role. I know I wasn’t equipped to deal with teaching others about my brain in my early 20’s when I experienced my first lot of workplace trauma, as I was still trying to make sense of it all myself. A lot of neurodivergent people, especially early on in their careers, don’t have the means or power to make changes in their company or organisation. “No one will listen to the new girl,” you assume. In many workplaces you have to have the status and credibility to raise issues and be taken seriously, and most of us aren’t in an influential position to be involved in structural change within an organisation. Every time I have written a complaint often about workplace bullying, it has been looked at internally within the charities I have worked for and not by anyone impartial, so essentially the CEO and senior managers were investigating themselves.
Most neurodivergent people are accustomed to fighting for things and holding people to account, and sometimes these are really basic things to help us function at work. I say function, as thriving feels like another level. To thrive disclosure needs to feel accessible and easy. Starting these conversations needs to feel like you’re not suddenly exposing your inner vulnerabilities to a new manager. It should support your productivity at work, so you don’t sign off several months down the line with burn out. And if you’re not yet ready to disclose? The system should be built for you; to include you, support your strengths and make work a positive place to be.
A different reality
When I worked for a mental health charity, the one workplace alongside where I am now that hasn’t traumatised me, we had ingrained in us the importance of having conversations. People would ask how you’re feeling all of the time and they wouldn’t take “I’m fine” for an answer, which at first I found adjusting to hard but now I can see why it was helpful. Time would be made for conversations at work, not always mental health or work specific conversations, just general check ins to see how we were. We weren’t judged, it didn’t feel awkward, and I was able discuss a WRAP (wellbeing recovery action plan,) with my manager. I explained to her in detail what I needed from my workplace and her as my line manager if I wasn’t okay, and how they could recognise this before I have to say anything. It’s the kind of conversation you can’t really have on the first day of a new job, but it is an incredibly helpful conversation when you have settled in, and of course you have to trust your manager.
When I was new to the world of work, I feared speaking honestly as I was so worried someone would use it against me. Now with more experience and understanding of my neurodivergence; I disclose on application forms and at interviews, drop a load of papers all over the floor when I first meet people and explain honestly what my neurodivergent brain needs from a line manager in the middle of an interview.
I’m a world away from the trauma I’ve experienced before and being here has given me the space I need to reflect on the dreaming I did years ago, when I always believed I was destined to be my own advocate, fighting for accommodations to make those simple things I shared at the beginning of this piece, easier. But actually I don’t need to anymore – although memories of previous workplaces still haunt me and I often still question myself – I can let the guard down slightly now, knowing there are places out there that are built for us.
Finding a working environment where you can fit means:
Being sent a clear timeline of deadlines for the week without having to ask
Not having to ‘explain’ anything because the system supports you
Someone checking in on you to see if your doing okay
Being told when you’ve done something well. The positive feedback meaning everything, because your manager actually means it
Having a personal development plan to revisit and monitor progression and progress
Not being questioned when you say you need something
Being encouraged during a “fun” work activity, even if you are set on giving up
A presentation going well and everyone in the team saying so
Using virtual to-do lists to keep instructions in one place
Reassuring you that it’s okay to ask for help
Building in accountability time into team meetings to get admin done
Calls to talk you through something when you get confused
Recording sessions, so your notes don’t miss important information
Emailing a detailed travel plan when working away, so you can keep track of where you have to be and when
Reflection and learning forming a core part of the working day. Realising that everyone can always do things differently and knowing there are safe spaces to explore this
Being encouraged to keep in contact with your manager, not for micro-management reasons, quite the opposite, to ensure you have a conversation before getting too stressed and overwhelmed.
An inclusive, welcoming, accepting ethos embedded across the organisation, with a non biased interview process that focuses entirely on strengths
Everyone, what ever their level in an organisation, listening to the whole teams ideas, feedback and reflections
Most of what I’ve experienced doesn’t cost very much, if anything at all. And that’s the thing, being inclusive, accepting, understanding of past trauma and welcoming doesn’t have to and won’t break the bank of most companies or organisations. No one’s going to be any worse off, just because you’re made to feel that you want to be there. It’s about creating a culture where this stuff is second nature, with structured time for learning and developing practices further.
I know most workplace’s are much further away from the practices in my current job – but the fact that my outlook on how I see and understand ‘reasonable adjustments’ has changed – means it’s really not hard for others to build and design an environment with and for us, not just an occasional extension we have to ask to use. And it’s everyone’s responsibility to be involved in that design.
This is what real change feels like. It’s wanting to be there, and knowing my contributions are valued.
I remember when I was about 17, staring out of the window and watching the rain on a wintery afternoon. I sat in a history lesson, silently thinking, “what the fuck is wrong with me?.”My history teacher had just come over to check an essay I had written, “Historians are not judges or juries,” he said, as yet again I had put too much emotion and an “I don’t agree with this” attitude into writing that had to remain factual and research based. I was never very good at that. That day I was thinking about a million different things, anything but the course work in front of me. The prospect of applying for uni soon. The personal statement I had to write. Going home. Plans for the weekend. My violin lesson after school. My mind was everywhere – it felt like I was in a constant traffic jam of my own thoughts – annoying and frustrating.
I was a somewhat chaotic, anxious and distant teenager, deep in thought a lot of the time, and always trying to fight for what I believed was right. I constantly felt like I was going into battle, despite being a peace loving hippy and a battle field was the last place I wanted to be. I couldn’t articulate how deeply unhappy I felt about the world I was in and trying to fit into, or find my place at the table. Many things didn’t make sense to me, the bullying, being taken out of my favourite lessons to go to the SEN department, the constant assumptions by teachers, being laughed at for being me, and when I was much younger people at school shouting I’ve got the “Alice disease” and making me believe that there was something very very wrong with me. Instead of articulating my pain, I became confrontational when I turned into a teenager, and would often argue with teachers, fighting to have my needs met, writing endless letters to the headteacher about the latest thing that made me angry about school and trying to do everything I could to actually get people to listen to me, I always laugh when I remember the time I told the school SENCO in front of several teachers and my parents during an annual review that “I can speak for myself”, when she asked me if I wanted a named person to “fight my corner.” They were all amused, but I was not wrong, there were moments I had to fight for support or just someone to listen to me, and I was more than capable of doing so. And it’s sad looking back that as a special educational needs young person (I hate that phrase, my needs were absolutely not ‘special’) that it was expected I would at some point need to go into battle, and there was even a space on a form to record it. Having to fight for something should never be the expected norm. If it is, there is something drastically wrong with the system.
‘Things will fall into place when I leave school,’ I thought. I assumed that on leaving school I would suddenly feel like a ‘proper’ adult. And people would finally take me seriously. Like a real woman with it all together, able to multi task, look after herself, have a social life and work towards a career. No idea why I dreamt about this so much, for it all to make sense, for my brain to make sense. I already knew I was dyspraxic, I understood I was different, I just didn’t know there would be more to my story.
When the pandemic hit, I thought I was finally in control and working out what a ‘real’ adult looks like. I’d just started my first full time job as a youth worker in an office at the age of 30, after years bouncing around in education collecting degrees and insecure temporary jobs with very little progression or recognition, I was very proud of my new job. I told everyone about my desk. My colleagues. The young people I worked with. The first few months I was in that office, I found that I had to concentrate more to get things done than other people seemed to, and in the evenings after the commute home I was exhausted. Around this time I also took up running, which turned out to be a great way to channel my chaotic thoughts. Loads of people work full time and commute, I told myself. I didn’t even have to look after a family, why couldn’t I look after myself? At work my desk buddy would complain about me being up and down a lot, I couldn’t sit still and was probably a nightmare to sit next to. Especially when she was on the phone. She was nice about it, and we had a laugh, but I still wished I wasn’t like this. When I was out of the office and working with young people I was in my element, my then undiagnosed ADHD was an asset in youth work, I could be daft and as outwardly restless as I wanted. Once I’d forgotten to buy bread for sandwiches, I had everything else to go in the sandwiches but not the bread, the young people found this hilarious as I laid out an array of sandwich fillings across the table. I did pop across the road to ASDA so they didn’t go without lunch, but they never let me live that one down. When I left that job one of them said “There’s only one Alice. We’re never going to get an Alice like you again,” which is moving but also made me so proud. That I could have that much impact on a group of teenagers who I absolutely adored.
As the pandemic progressed, and my world suddenly became even more uncertain, the wheels began to fall off my already unsteady double decker bus. I eventually sought an ADHD diagnosis from a private psychiatrist because the NHS waiting list is three years, I couldn’t put everything on hold for three years. After my virtual assessment where he asked me a lot of questions about my history, my functioning at home and work, and the challenges I have faced, he confirmed that I most definitely have inattentive ADHD. A diagnosis affecting 3 – 4% of adults in the UK population. Getting diagnosed at the age of 31 made me understand my life better than I had been able to before, my relationships with family, friendships, the way I process difficult or traumatic events, battles at school and eventually work. I could answer some of the why questions now.
Around this time I also began to see a very good, but also expensive neurodivergent aware therapist who I was fortunate to get funded through Access to Work. She helped me to unpack a lot of what I now recognise as childhood trauma that I had tried to make disappear was intrinsically linked to my neurodiversity. As I slowly began to put pieces of the jigsaw together, I started to understand the world I had grown up in. And how my undiagnosed and untreated ADHD related to this. Trauma is something I’ve learned is very common amongst my new found ADHD tribe, I say “new” although a lot of people I knew when I was younger and more recently have either suspected or newly diagnosed ADHD too. And overwhelmingly many are women. In recent years more women seem to be getting diagnosed with ADHD who were missed as children, often because we didn’t present as the stereotypically ADHD child, and in the 80’s and 90’s teachers just weren’t looking out for us. We’re finally now being recognised as having a neurodevelopmental condition and not being put down as ‘anxious or hormonal.’ ADHD is not a new thing, it’s always been here – people are just talking about the none hyperactive eight year old boy running around the classroom presentation more. When I described horrendous symptoms of PMS to a doctor once I was told that I was, “just hormonal.” Being taken seriously in a health care system built for and designed by men is a battle in itself. I have also gone to the doctors countless times with now what I recognise as symptoms of ADHD to be fobbed of with “it’s anxiety” and a prescription for antidepressants and advice to join the waiting list for NHS talking therapies. Citalopram doesn’t treat ADHD symptoms or the dopamine deficiency that I now know my brain has always had. If anything it just made me care less about things.
ADHD is characterised by either being hyperactive, inattentive or a combination of the two. It includes impulsivity, difficulty maintaining focus or channeling attention, executive functions like time management, organisation or remembering instructions, and then there’s hyperfocus – being so engrossed in something we enjoy and not being able to do anything else or switch attention. ADHD can also affect us emotionally too, and especially as women our ADHD is very much impacted by hormones at different times of the month, an area that is still underresearched. Sometimes I can really be on it, and know exactly what I’m doing, other times I just feel like a confusing jumble of words. Rejection Sensitive Dysphoria (or RSD) despite not being is the DSM5 diagnostic criteria, is still reported by a lot of people with ADHD. RSD is basically extreme or intense reactions to rejection or perceived rejection, and can be incredibly debilitating when it does strike. Women are more likely to be diagnosed later in life, partly because we’re not picked up as the naughty kid, but also as girls find ways to hide their difficulties and fit in with their peers. In my my case neurdiversity was picked up as a child, they diagnosed dyspraxia when I was 7 but even then conversations were around my physical difficulties; coordination, appearing clumsy, fine and gross motor skills. There was little attention paid to working memory, organisation and executive functions. The difficulties associated with inattentive ADHD often become more apparent as we get older, when parents don’t do everything for you. Your parents don’t make you a packed lunch everyday anymore and you are expected to get yourself to university or work on time.
When I was diagnosed my psychiatrist told me that my brain has a deficiency of norepinephrine, the neurotransmitter that is linked to dopamine. As a result the pathways or wiring that sends messages through these neurotransmitters to my brain doesn’t function as other people’s do. Meaning that something that comes easy to you, can feel like climbing a mountain to me. ADHD brains have a lack of dopamine, the feel good chemical we all need to function or get stuff done. When we go for a run or listen to music or dance, our brain releases dopamine and my brain doesn’t produce enough of it. This is also why running or exercise is great for ADHD as it helps produce the dopamine we need. I also learned that a lot of people with ADHD respond positively to stimulant medications as they reset the neurotransmitters to give us the dopamine our brain doesn’t naturally produce on it’s own. This can improve executive functioning skills including focus, attention, time management and organisation.
ADHD Treatment
Following my diagnosis in November 2020 I put off starting new medication for a few months until I had trained for a half marathon. Half marathon over I was ready to see what it felt like to be medicated for my ADHD for the first time. I was prescribed Elvanse, a stimulant that has made a drastic improvement to my life. I was scared at the beginning, as I’m sure most people are about taking medication that could either be the best thing ever or not so brill depending on how your body reacts and metabolises it. Happily I was the former. The treatment helped with focus, attention, organising my day and the million thoughts an hour that my brain was occupied with. I was suddenly able to concentrate in meetings, meet deadlines and not feel so exhausted at the end of the day. Anxiety seemed to almost disappear and as a chronic insomniac, I was finally able to get a good nights sleep. It worked like I heard people with positive stories of Elvanse describe. There were no side effects. I felt calmer and the noise in my brain stopped shouting at me. I was able to focus on my work, feel more productive and organise myself in a way I have never been able to do before.
I continued with my treatment plan and had regular reviews with my psychiatrist to ensure I was on the right dose, and the medication was having a desired effect. Through keeping a detailed titration diary it was clear the medication was working. I was finally stable in January 2021, just over three months after I had started titrating on this new medication. I felt positive and that this was finally the start of a new life I thought would never exist. Following a period of being stable on medication when diagnosed privately, the usual process is for a psychiatrist to write to GP’s to request a shared care agreement, this means I would be able to get my medication on the NHS rather than expensive private prescriptions that are unsustainable long term. A GP takes over the prescribing whilst still remaining with the specialist psychiatrist for 6 monthly reviews. My psychiatrist wrote to my GP surgery to request shared care.
Sounds straightforward written like that, doesn’t it? This is where the battle began…
Going into Battle
At first my GP surgery didn’t respond to my psychiatrists letter, I had to chase them up to be told over the phone that they won’t agree to a shared care agreement but they couldn’t tell me clearly why. During various phone calls with pharmacists and practice managers, and one face to face appointment with a doctor over the last ten months I have been told: I need an NHS diagnosis, they questioned my psychiatrists qualifications and if he was “legitimate” and mentioned that I can’t expect them to prescribe “heavy duty drugs”. They were concerned about “continuity of care” if something happens to my psychiatrist. Whilst maintaining that it is a CCG policy. I was continually discriminated because I have a private diagnosis and they refused to provide treatment and care I should be entitled to on the NHS. And failed to give me an acceptable reason why.
I took my case to the CCG and MP. The CCG told me in a response to my complaint that they can’t direct individual GP’s and deciding to enter into shared care agreements was down to practices discretion. My GP still maintained they were being directed by the CCG, who told me me the opposite. It felt like an argument between two school children who were blaming each each other, “No they done it.” “No it was her.” Except this wasn’t a playground dispute that can be resolved by hugging it out and making up. It was already having negative consequences to my mental health. I was exhausted. I didn’t think I would ever get any answers. I ranted to understanding friends and to Twitter whenever I got a chance, and tried to push through. During this time I was also going through two bereavements and was in the process of changing jobs following a redundancy. There was a lot going on, I put dealing with everything as well as I did partly down to medication, alongside having incredibly supportive friends.
I wrote another letter of complaint, this time to my GP, asking them to put in writing exactly why they believed it was unsafe to prescribe me Elvanse, quoting the cost of living crisis and outlining the detrimental affects denying the medication we need to function can have on adults with ADHD. They took a while to reply. They told me they had to have several meetings about complex issues. I waited.
This week they wrote to me to say they will AGREE to shared care with the term that I attend my six monthly reviews with my specialist. Attending reviews is a condition of all shared care agreements, so highlighting this is bizarre. I assume they want to hold onto some kind of power and control.
I have shared care because I fought, and was able to fight for what I know I should be entitled to. Many people are not able to go into battle. ADHD if left untreated can cause more consequences on the NHS long term, and a boomerang effect of accessing mental health services. ADHD is often linked to substance misuse disorders, imprisonment, unemployment and educational underachievement. It is estimated that around 1 in 4 prisoners in UK prisons meet the diagnostic criteria for ADHD and many adults with ADHD are at higher risk of entering secondary mental health services, with one if four woman with ADHD more likely to have attempted suicide than those without.
This victory to get shared care feels like I have achieved something amazing, won a competition or completed a degree, people are sending me Prosecco and chocolates to mark the occasion. It’s lovely but it really shouldn’t be a celebratory event. We don’t send people being treated for heart conditions or diabetes congratulations cards, it is just expected that they are able to receive their treatment with minimal battles. ADHD is massively misunderstood within the medical profession. During this on going saga a GP told me he phoned and didn’t leave a message because “given my diagnosis of ADHD lengthy written replies would be overwhelming for me.” I haven’t yet found the energy to tell him that actually I deal with words for a living, and his assumptions are miles away off the mark because many of us ADHDers are very confident and capable writers.
The last ten months have taught me:
There isn’t any valid reason why a GP Surgery should deny a shared care agreement
I only got shared care because I was able to fight
Many people across the country are being failed by the system
Professionals (Doctors, GP practices, Clinical Commissioning Groups) need to talk to each other. There needs to be some joint up thinking nationally about how to best support the growing number of adults seeking ADHD diagnosis within the NHS.
GP training should include how ADHD affects women, the often late diagnosed inattentive presentations and the benefits of ADHD medication. Rather than fear about side affects and treating prescribed stimulants like street drugs.
I don’t have the answers to any of these points, but with the support of my MP I hope to highlight the flaws in the system, so people getting diagnosed in the future don’t have to fight for ten months to get the medication they need.
I am over the moon to finally get shared care agreed, and sad knowing my story is not uncommon. Women are now spending time reframing their life with a new diagnosis in tow, and how knowing they have ADHD can help in a chaotic and uncertain world. We’ve worked on ourselves through therapy, education, medication and writing about it. We’ve connected with others, and shared our stories. So now it’s time for the NHS and medical profession to reframe how they respond to the treatment of a growing number of adults with a late diagnosis of ADHD. We’ve done all of the hard work in getting us to where we are today, more than you will ever understand. Now it’s up to those with the power to change the system to do the rest.
ADHD medication, treatment and support is not just life changing, but life affirming.
It’s a year ago since I ran my first half marathon, the Great North Run; that became a great way to channel my hyperfocus before I was medicated for ADHD, and a lot of complicated feelings. It is also largely one of the biggest achievements of my life, and something that I will remain forever proud of achieving. I haven’t ran it for years like a lot of people who keep going back for more, so my authority might be questioned, but I have done it once, and 13.1 miles is a long time to reflect on what you’re doing and why you’re there. I’ve been running on and off for several years now, and each time I come back to it, I realise how good it is for my brain, and that there is nothing quite like the feeling in your heart after finishing a run. Of course I ran the Great North Run for myself, to get a medal to prove I actually ran the thing, but I also ran it for Gateshead Youth Council, the youth organisation who taught a shy, anxious teenager the values of participation, feeling included and being listened to, like really listened to. The very values that I held onto so tightly as I’ve developed my own career working with young people, and ensuring that they have better life chances, outcomes and opportunities. I especially want young people of the future to be able to say “I did it” too, especially about challenges that once seemed impossible.
This Sunday, it is the Great North Run again. I’m not running it, but I will be there to cheer everyone on taking on the challenge this time, and I’m sure feeling emotional about how I felt running it this time last year. I’ve been thinking a lot about what running taught me, not just long distance running but trots around the block, and runs that didn’t go well and those that did. I’ve channelled these thoughts into something productive and put together a list of reflections a year on and some advice for Sundays Great North runners.
Run for you. Not for your club. Your charity. Or anyone else there. Do it for yourself. I took up running to do something for me, originally it was to be able to channel my questionable mental health and anxiety into something positive. When I ran, it felt like, at least for the duration of the run, that I could leave any baggage at the door. All I had to focus on was the beat of the music and my feet on the ground. I’ve often felt awkward about times, and I rarely share mine, I always describe running as a race with myself and that’s all that matters. Improving for yourself and not because someone has a better time than you. A race like the Great North Run isn’t about times, it’s about getting from point A to point B, no matter how long you take. It’s about being there, and feeling proud for being there.
Get a good nights sleep several days before. Goes without saying, but get as much rest as you can before Sunday. And try to sleep as much as you can several days before the run, you’ll need it as once you’ve finished tapering you’r body will need time to regain the energy. I slept really badly the night before the run, and kept waking up having running dreams. It’s hard to avoid if like me you’re prone to insomnia before big events, but it’s always better to not attempt to run a half marathon on no sleep! And several nights of sleep before, even if you have a bad nights sleep the night before can help…
Carry plasters. When I ran I had the remnants of blisters from training. And plasters will fall off, or rub. Extra plasters in your pockets or bra are a life saver.
Plan your wees Sounds daft, but always better to go to the toilet before you make your way along to the start. There are no toilets on the start line just a lot of people peeing behind trees. And if you’re anything like me and too dyspraxic to cope with wild weeing with dignity, making use of the portaloos when you see them is a must. There are a lot of toilets along the route too, so you shouldn’t be caught short.
Arrive with plenty of time: Get there early, so you have time to eat a banana, walk to the other end of the field to visit the portaloos and work out when you have to make it down to your pen. There are lots of people there to direct you so you can’t go far wrong.
Take a insulated blanket to discard It can get pretty chilly hanging around the start line, so a lot of people take old joggers or hoodies to discard just as they set off. I didn’t feel confident undressing quick enough, so i wore a disposable insulated blanket. So much easier. You’ll also probably get one of these at the finish, when your body temperature drops post run.
Enjoy the atmosphere The buzz from everyone cheering you on is like something I’ve never experienced before. There will be kids handing out sweets, music on every corner and people from your charity waiting in the cold pushing you on to finish.
If you’ve trained with music, run to a beat A lot of people will tell you to leave your headphones at home as you can’t really enjoy the atmosphere with music. I trained with music for every run, and I can’t run without music. I ran with bone conductor headphones, but you don’t need to. Any headphones that you have trained with will work. Music provides an emotional connection for me, and a way to escape when the running gets tough. I made running to music an event in itself, asking friends and family to choose a song for my running playlist. This left me quite a varied collection of music, and being able to think about that specific person as it came on when I ran. A beat also helps me to keep my rhythm and pace. If music helps you too, make sure it comes with you for this half marathon.
Plan your walking bits. And don’t run it all. Walking is important for conserving energy for when you really need it and not burning out too soon. There was some awful, and often gradual hills once I past Heworth that snuck up on you, and I walked some of those bits. Running over the Tyne Bridge is one of my favourite parts of the run, the place when you realise, god I really am doing this thing!
Smile! I had a massive grin on my face all of the way round, even on the painful hilly bits. Everyone kept saying “and she’s still smiling!” I was terrified of what I was doing really, but equally incredibly proud to be there and running for an organisation who really do matter to me. Making my face show some of my feelings helped.
Don’t try and do too much post run Other than eating all of the food, don’t plan too much for the evening. Your body will be exhausted, and if you’re anything like me, I struggled to walk for a couple of days after, until eventually my legs got back to normal. My evening after the run, was food, bath with all of the muscle remedies and bed. Don’t put too much pressure on yourself to “celebrate” much beyond that.
Pack tissues! Whether you’re fighting the last of a cold or for when you ball your eyes out when a song comes on or a child shouts your name, telling you “you can do it” just as you’re nearing the finish, you will need those tissues.
Get support for any big feelings running brings to the surface Running is a great companion to therapy but it shouldn’t be a substitute for therapy if you’re working through big feelings. During or after the race the reason behind or leading up to your motivation to take up running can hit you. And talking this through with a professional can help, although I know accessing support is easier said than done. I took up running when I felt overwhelmed with anxiety and undiagnosed & unmedicated ADHD. Running was a helpful outlet to channel these feelings, but has only been one way to explore them. Listen to your brain as well as your body post race, and during training too.
Understand your grief post race No one warned me of this, but it very much happened, and makes sense. After completing the Great North Run I went through what felt like grief, I felt low, lost and like I had experienced a loss. Running had been part of my life for months, I’d planned everything around training, it had been a constant topic of conversation. And once training for a big race was over I felt bereft. At first to deal with this loss I considered signing up to other half marathons or even wondering if I could do a marathon to fill the void. I didn’t in the end. I sat with my feelings for a while and allowed myself to grieve the loss of working towards one of the biggest achievements of my life. Grief after you finish and your body physically recovers is totally normal, just do what you need to do to ride those waves.
Tell everyone you made it! Geordies are a friendly bunch, so I have no doubt with the crowds enthusiasm you will make your way round. If you’ve put in the training and are determined to finish, you will get there. A year on I still have conversations with people about “that time I ran a the Great North Run”. It never becomes old news.
And finally, good luck on Sunday! Enjoy your run, there really is no experience quite like it…
Inclusion is a word that has been bandied around in ND circles for as long as I’ve been on the scene. How do we make sure people feel included? What reasonable adjustments should I ask for? When/should I disclose? are questions I see asked in Facebook groups and on Twitter. I have often wondered what I need when starting a new job, and struggle to know what Access to Work could provide. Or what would really help me. How do you explain an ADHD brain to a new boss? is one of a long list of questions. My ADHD has often caused more complications at work than dyspraxia. Developing a way to maintain focus on what I’m supposed to, staying on task, being able to make myself stop for lunch and being easily distracted were all a challenge when I was undiagnosed and unsure exactly what was going on with my brain. Not being medicated until my 30’s certainly made the workplace feel like I was going into battle with my brain every morning.
I’ve recently started a new job, and for the first time in my life at almost 34 i’ve learned what inclusion really means, and feels like. I thought I knew what being inclusive meant, but I couldn’t have been further away from the truth. For years inclusive meant what people wanted me to believe. I thought I had to ask for things. I felt awkward about disclosure. I ruminated about when the right time would be for people to see the real me. I wondered if I should hide my neurodivergent brain. And in some situations now the mask still comes down. I assumed that inclusion meant I needed something special or different to other colleagues, because I was well, different. I didn’t fit in. The words “special treatment” swam around my brain. I thought reasonable adjustments were the answer. I never felt “normal”. I was taught that I’ll always have to fight for what I need.
I’ve now realised that none of that was true. You don’t have to be treated as “special” or “different.” You just have to be you. I have been around the wrong kind of practice and workplace for too long, the kind of practice that makes us ND crowd feel further away from a team. I know I’m not alone in feeling lost finding my feet at work, neurodivergent people are more likely to experience workplace trauma or burnout following a lack of support or understanding managers who create an environment we can thrive. Every one of my ADHD & dyspraxic friends shares some kind of traumatic workplace experience or on going mental health difficulties often exacerbated by work. It is sad. And it really shouldn’t be like this.
Starting to experience inclusion for the first time has taught me that reasonable adjustments, should just be practices adopted for all as standard. I always thought I had to gear up to have a “special conversation” about what I need, and to keep reminding management when they don’t do what I ask for. This absolutely isn’t the case. And shouldn’t be, for anyone. Not having to plan this conversation has been a revelation. I haven’t had to ask for anything “special” in the two months I’ve been here. This has meant i’ve felt included, part of a team, connected, valued and listened to, without asking for anything different to what they already do. Everything is Neurodivergent inclusive from interview right through to induction and beyond. All employers should make ND employees feel like they have a place at the table without having to ask for anything that hasn’t already been considered to help them sit there with the rest of the team. You wouldn’t ask for a chair when you book a table at a restaurant, you would expect it to be included when you make your reservation.
The tools, techniques and learning should be in place long before we start a job. The workplace is full of neurodivergents, many undiagnosed or who choose not to disclose. No one should feel they have to out their neurodivergence until they feel ready, and managers should build environments based on these principles. Before we accept an offer. And without having to ask for it. Inclusion should always be there and central to a workplaces values, ethos and structure. A strategy developed to ensure everyone feels included. This is what I’ve learned, and I hope you can learn from this too.
Interview
Since the pandemic many employers are opting for online interviews, rather than face to face. For me this helps as I don’t have to worry about finding a new place/getting lost/google maps failing me when I also have to make a good first impression. It also helps to be able to focus on the interview preparation and not spending half of that time analysing google maps. This was a standard part of the interview format:
Pre-interview tasks emailed in advance, rather than something to do during the interview. Not all jobs require a task beforehand, but for most comms roles these are pretty standard. I was emailed a task, with clear instructions and summary at the end explaining everything I had to do and by when, then just before the deadline I was sent a reminder email.
Writing every interview question in the chat as they are asked. Being able to read back the question helps with working memory and processing. So simple, yet so helpful.
Not asking questions in two parts. This is horrendous for ND brains, as I can guarantee I’ll forget there was a second part of the question. The feedback for an interview I had several years ago for a job I didn’t get was, “did not answer the second part of the question,” I did not know there was a second part.
Offering prompts if an answer needs to be expanded, or you didn’t mention a key part of the job description. In one question I forgot to mention social media, when social media is pretty key to my comms roles. I was so focused on describing a newsletter in detail. This prompt allowed me to say what I wanted to say, I just needed to be reminded it was in my brain waiting to get out.
Using a de-biased interview and application process.
Induction
Over the years I’ve had jobs with no induction process, literally just a tour that was classed as induction and places with a list to get through, but with so many conversations I forgot everything when the induction was over. Getting inductions right shouldn’t be hard, but putting the right kind of induction in place can mean the difference between an ND employee feeling overwhelmed before they even begin or thriving in a place that accepts them.
A longer induction process is key. Something that is only a week long will lead to our often poor working memory not being able to handle all of the new information.
A clear timetable of induction sessions, noting any useful reading to do before the session. Having something to read or watch helps us retain information.
Record all virtual induction sessions. Sounds simple but this has literally changed my life. I know this is harder when in person, but if over zoom, press recored. The session can then be available for anyone who wants to go back and watch it later. Every induction session I’ve been to, I’ve watched bits of again, and when I’ve been on annual leave I don’t have to fall behind as I can catch up on any sessions I’ve missed.
Reflection – building in reflection as part of the induction helps everyone to learn and feedback what went well, what wasn’t helpful and things to do differently next time.
Accountability
Something that helps me and many of specifically ADHD people I know is accountability. Having someone say “have you done that thing?” or just checking in to ask “how are you getting on with this?” or “how are you doing for time?” and even “Do you think you should have a break and come back to it later?”
If I don’t have any kind of accountability I will work on the wrong thing for far too long, or work on the right thing but a tiny part of it for ages; tip: it’s great you’ve got that one sentence perfect, but there is still a whole document to proof read before Christmas, and when hyperfocus takes over I can overlook admin. Since being medicated for my ADHD instead of struggling to start work somedays, I now struggle to stop. Accountability helps to pull me back when I need to be. Helping ND folk to stay on track doesn’t need to be complicated. It just needs to be checking in and asking the right questions. This has all helped:
Regular check in calls. Someone to say this is what we have to do, these are the priorities, does everything make sense?
A shared to-do list following every check in, to tick of tasks or add notes if more clarification is needed.
Group admin accountability time. During team meetings there is dedicated time to do time sheets and expenses. We stay on the call, and give everyone a bit of accountability to get these done. Some elements of Admin is vital in every job, but for us ADHD gang getting it done can be hit and miss. It doesn’t give us the dopamine we seek, so we’ll put it off until we have a mountain of receipts (if we haven’t lost them) but no expenses actually claimed for. I’m so on top of my expenses these days because there is dedicated admin time built into my work day.
Virtual chat groups to post what you’re working on that day are good to build into an organisations day and also helpful to keep people on track. I now know that before I do anything, I need to tell everyone else what I plan to do.
Software
When starting a new job the one thing I’m always told is “apply for Access to Work!” “You can get assistive software!” But what does this software actually do? And will it help me? When I did apply, and was given software in previous jobs, I rarely used it. The software is so generic, it’s like saying every ADHDer needs to run 10 miles every day before work. We don’t. Some of us might want a walk, or maybe just a sit down. We’re all different. And if you were running that far everyday I’d probably be worried about you, so don’t do that. Two things that are important for remote teams are A) to keep everyone connected and B) Ensure everyone has an opportunity to have their say. The most ND accessible software that I’ve found to be more useful than anything I’ve used before, is not something “special” for me that I have to go through the complicated admin process of Access to Work to get several months later but software that is used by the whole team, because it works, Notion and Miro. Notion basically allows you to create to-do lists, plan projects and collaborate as a team. It also acts as a place to easily find information. Want to check out a particular policy? Or can’t find a form? Notion is where it’ll be. Miro on the other hand is essentially a giant virtual whiteboard with lots of post it notes. It’s great for team meetings to get everyones thoughts or for smaller group planning. No voice is ever lost with a post it on Miro. It can also be used to make training sessions, team meetings or inductions much more interactive and participatory. I’d be surprised if Miro wasn’t designed by someone with an ND brain, it’s so ADHD friendly, it should be available on prescription. I never have to lose an important post it again.
Throughout my life I’ve had to work around a lot of things, or even accept that sometimes the world isn’t built for me. That my brain functioning, now massively helped by medication, isn’t considered when designing the majority of services, organisations or places of work. That in order to access these like everyone else, I would have to sit down and have a conversation about being different and ask for alternatives to the way they do things. I often harp back to being a kid at school with undiagnosed ADHD but diagnosed dyspraxia and a statement for special educational needs. I once had an orange card on my desk because I had extra time in exams, talk about making a teenager feel branded. I learned that I was always going to have something different to everyone else, and people would, as they did at school, ask questions. I wasn’t taught about the ways my brain would be an asset at work and that one day I would feel part of a team.
Inclusion isn’t hard. It isn’t complicated. But when done right and when standard practices are inclusive it can make the world of difference. You don’t suddenly build a lift when a wheelchair user applies for a job, you will always have that lift. Exactly the same principle. Always assume that at least one of the brains on your team will be ND.
No one should have to wait until their 30’s to understand inclusion. We shouldn’t be told “Oh that’s just the way it is” in response to questions about inclusion and accessibility. So many organisations claim to be inclusive, but what are they really doing? Are they just going through the motions to become a disability confident employer? A previous manager several years ago once told me that I had to change who I am because my Myers Briggs personality didn’t match what she wanted a youth worker to be. I always use this as an example to emphasise when inclusion doesn’t work, and then it really really didn’t. I’ve gone from almost believing that my way brain wasn’t good enough at work to now feeling valued for what I can do without the unhealthy focus on where I might struggle.
When your life doesn’t follow the expected norm or the route everyone takes, people often look at you as if you have three heads from another planet or with pity. All of the pity. In my year 11 leavers book someone wrote; “I hope you have a lush life, with a lush husband and lush kids.” At the age of 33 I have none of that. When you tell people you’re single, it’s often assumed that you’re either heartbroken, searching for the right person or have issues. It’s rarely accepted that being single is a decision anyone could actively make. And as I’ve got older, I’ve realised more so than before how different I am from most of my friends. Getting older also invites more intrusive questions than I endured in my 20’s. In your 20’s it’s recognised that you have all of the time in the world. “Go out and have fun,” they say! But in your 30’s you’re asked “So when are you having children?” “Is there someone we haven’t met?” “You must be seeing someone?” No, I’m really really not. And I’m very much aware of my clock ticking thank you very much.
Up until now I’ve been quite content with being me, and busking life as well as I can. It’s only recently when more friends are getting married or having children or buying houses, I’ve considered being left behind as everyone moves on without me and what this really means. A few years ago I came to terms with feeling comfortable that being single was a decision I’ve essentially made. As it is also Pride month I’m now starting to come to terms with the fact that I’m probably not completely straight too, which adds another complication, and with not actively looking for a partner for a while its never been a conversation to have but thats a different blog post entirely. There are some single people who have not made this ‘choice’, they are looking for a relationship but for whatever reason are unable to find a partner, I do not fit into that category, I just don’t want one. There are very few people who understand this train of thought or can even empathise.The last place you’d find me is on a dating website. I know people who have met their partners online or even through Twitter and that’s great for them, but it’s really not for me.The world is built for couples; from mortgages to railcards to holidays. Single people are often disadvantaged both financially and emotionally. I want to buy a house, but my options so far are to find a friend who I like a lot to buy a house with me or chancing it with a lodger.
There have been times when I’ve been excluded from events because they’re for couples or I’ve felt awkward going along because I don’t have an immediate plus one. There have been times when calls or socialising with friends is specifically organised around their partners diary. On other occasions i’ve been told that I have to see friends with their partner now, and the time one to one with my female partnered up friends is long gone. Sometimes i’ve felt out of place and like a spare part. Recently I lost two grandparents within a week of each other and both sides of the family are at opposite ends of the spectrum. On one side I have a huge family, there are loads of cousins and I have four uncles who shared the load when grandad was ill. There was always someone to visit him, or do his shopping and go with him to appointments. When he got sicker family were always with him, and questioning his level of care. He was not alone when he died. My grandma in comparison was very isolated and had a very different experience of the last few weeks of life to my grandad. Coming from a big family I do often wonder who will hold my hand when I die?, will my mum always be my next of kin? and who will look out for me when I am no longer able to advocate for myself? It is scary. And also a reason why maintaining strong and healthy friendships is so important to me because no one really knows what the future holds. It’s comforting to think your friends will stand by you.
Recently on twitter I read a tweet about embracing isolation and aloneness, and finding peace with solitude and going it alone. Whatever going it alone means. I pondered what being alone means to me, and how I can shape my experience into something a little bit more positive than the think pieces that dominate the internet leading you to believe single people are ‘lonely’ or ‘hopeless in love’ or ‘just not looking in the right places’. Or expecting single people, overwhelmingly women, and often women who are seen as “different” in other ways too, to justify themselves. I hate having to explain myself or answer the ‘why are you single?” question, but I wanted to write about this because that twitter thread prompted me to realise this is evidently on lots of other people’s minds too. Of course there is sometimes a degree of loneliness involved. but that loneliness is often as a result of society dictating that we must conform to a specific expected standard. And that anything outside of that norm is a failure and needs to be fixed. We also need to rethink how we approach the topic of relationships in small talk, work meetings and social events, I’ve lost count of the times when I first meet someone and I’m asked “So do you have a partner then?” I was once asked this by a taxi driver, that isn’t just inappropriate but verges on creepy too. People’s relationships or lack of relationship status shouldn’t be number one on the list of small talk topics. You can get to know someone without asking if they come in a pair.
Being single to me means that I’ve been able to form more meaningful, deeper friendships than I might have done if I had a partner. I also really value the friendships I do have. I’ve been able to give time to my friends and make plans without the complication of having another person to consider. It’s also meant I’ve been able to work on myself and get to a place where wellbeing is my ultimate priority. I’ve been able to work through the trauma I’ve experienced over the years and do things at my pace. Staying away from problematic men has been largely helpful for my mental health, and I feel privileged to have been able to do that as I know other women, especially neurodivergent women, fall into relationships that negatively affect their mental health. I’m fortunate for that to never have happened to me, people have been inconsiderate, taken advantage at times or even wanted to use me as a project to ‘fix me’, but I have never experienced abuse. And for that I am incredibly grateful to be in this position.
Social expectations interest me. They interest me because for much of my teenage years, I didn’t understand them. I’ve spent years perfecting my understanding of what a “good friend” looks like, and how to be liked by other people. When I was a teenager, any suggestion of a relationship seemed a) impossible and b) something that would confuse an already complicated situation when I didn’t really understand my identity. Hello ADHD diagnosis decades later. Figuring yourself out first before figuring out other people helps. There was also a sense of embarrassment to talk about this when I was younger because I didn’t fit in with what I should be doing socially. I’ve moved on from this embarrassment now, as I’ve realised many more people have lived equally embarrassed and quiet lives in their late teens, 20’s and 30’s because no one talks about it. I’m more of a heart on my sleeve kind of person now after having the time to process this stuff and piece together what it might mean to me. Some questions are of course still off limits, unless you know me really well and you know delving into whatever issue is going to be helpful for both of us.
I’m still working out what aloneness, isolation and solitude truly means, and I’d love to hear from anyone with similar experiences. I do know they aren’t all negative. Yes, at times I feel intensely lonely, but my loneliness isn’t a direct result of my choice to be single. The last two years have also given us all a different perspective on isolation, and identified that most of us, although at different levels, need some form of social interaction. I wonder if the pandemic has created a greater pressure to be social and to find companionship, after we’ve spent a great deal of time unable to visit those we care about the most. What makes us truly happy? Not having our loved ones threatened by a deadly virus for a start, but beyond that, I don’t think a relationship can ever create true happiness. Fairy tales from when we’re a kid, and societal expectations make us believe this, but if you constantly go from one to relationship to another, with barely time to focus on yourself, how do you know that’s what will make you happy? The processing time I’ve had has given me a unique perspective on where I might want to be in the future; a future that wouldn’t have been possible without this time. The concept of time is a bit terrifying when you’ve been through so much grief. I know time isn’t endless. There isn’t a bottomless pit of time. I will never know if I have all the time in the world to work things out but I do know that being single shouldn’t be an awkward topic of conversation. And I’d love for more people to recognise that some people have different priorities to the majority of society, and the wee map we’re sold when we’re still running around playing make believe weddings at lunchtime. It would be hard not to find someone who didn’t marry their neighbour with a Haribo ring. In writing this and reflecting a lot on my own single status, that whether happily single or unhappily single, many of us still have mixed feelings about it all. The point of this post is that I’d like to see less of the treating single people in their 30’s like we have three heads from another planet. The assumption that our circumstances of not bringing up a family means that we have somehow failed as a woman. I hope that with more people speaking, writing and researching being single and solitude, there will be more understanding, or at least listening to understand the path we’ve chosen to follow. Less intrusive or insensitive questions would help so many people trying to figure all of this out.
Give us space in a world or even a seat at the same table that is very much built for couples. Not too much to ask, right?
This is one of those posts I really really wish I didn’t have to write. I’ve always processed everything in words, writing helps me make sense of things, to join the dots and connect. Writing is a tool my neurodivergent brain has developed as a strategy to organise my at times overwhelming thoughts into some kind of order. A strategy I didn’t even realise was a strategy for a long time, it’s just something that’s always come easy to me, when most other things haven’t.
When Christmas 2021 came around I was hoping, thinking that the world can’t get any worse, that we’ve seen the worst of it over the last two years. The world has dealt with a collective grief, and luckily I didn’t lose anyone during the height of Covid, for which I am more grateful than I can put into words. Those of us who didn’t lose friends or relatives have been experiencing a different kind of grief. Grieving for a life we once had that has been taken away. A life where we didn’t have to consider the risks when meeting up with friends. The closeness to others we took for granted, assuming it would always be there. But we can never assume. We can’t assume that anything or anyone will always be there. Because as we’ve learned in the last few years life can change instantly. And it can be very difficult to recover from that.
A few weeks ago I lost two grandparents (from both sides of the family) within six days of each other and I’ve mainly been functioning on adrenaline and Elvanse since December. I’ve dealt with grief before, both the sudden death of a friend in my 20’s and other grandparents when I was a teenager, but this feels different. Two bereavements in such a short space of time is a lot to unpack. I have more awareness of how grief affects me now, and I’m currently working through the realisation that ADHD and grief are very much intertwined. Grief while still in a pandemic is also an incredibly complicated concept to get your head around. My Grandad died (the first of the two deaths) just days after Putin began to invade Ukraine, so while I was getting my head around the imminent death of my grandad, who was incidentally in the army and saw terrible atrocities himself, I was watching a European nation dealing with a collective grief and trauma, while thousands of people were becoming displaced by war. I banned myself from the news for a while, still with the knowledge that a war had began, and Covid wasn’t even a distant memory.
Since both deaths, I have been thinking and working out what it is I’m feeling or need to feel. No one tells you how to grieve, it is a very personal journey with no clear map or end point. There is no right way to grieve. One thing I have noticed is that my ADHD feels louder than ever, even with the wonders of Elvanse, I feel in a bit of an ADHD black hole at the moment. For neurotypical people grief can affect executive functioning, processing and emotional regulation, so really it’s not surprising that the things I already find difficult are compounded by grief. The grief I’m experiencing is already so much to process, and it wasn’t there before, so everything else that used to take up brain space gets pushed out to make way for processing these two bereavements. I’ve found myself struggling to find the words to process anything else outside of my immediate feelings of grief and to some extent guilt. I’ve thrown myself into work because I want to feel I can still get stuff done, after Elvanse has shown me a world I didn’t know existed, but I find responding to work emails or focusing in meetings overwhelming, and exhausting. I haven’t felt this fatigued in a long time. The tiredness affects my dyspraxia, making my coordination a bit of a literal hit and miss state of affairs. I’m more chaotic than usual, even now I’m medicated, with millions of thoughts swimming around in my head with no real order or structure. I’m writing this post right now, when really I should be writing the eulogy for grandmas funeral, prioritising tasks seems to have gone out of the window, along with my ability to sleep through the night. ADHD medication doesn’t work as well if you haven’t slept well, and I know it. Insomnia and inconsistent thoughts at 3am have become my new normal.
Over the years to compensate for my heightened difficulty in processing when dealing with any difficult or traumatic events, I’ve tried to get the emotional processing right. This usually involves talking. Or at least trying to make sense of it all to other people. Except I’ve realised not everyone responds well to me trying to unpack big feelings by texting them essays or over email, so I’ve become more selective about who sees that side of me these days. I’m lucky that I’m coming to the end of ADHD specific therapy while all of the grief is going on, which helps, I have an outlet and someone who is paid to listen to me. And help me process my emotions and neurodivergent complications that accompany my grief. Sometimes though, I just don’t know how I feel. This baffles me because I often feel emotions to the extreme, if I’m upset I’m very upset or when I’m angry I’m incredibly angry. Numbness is common with grief, as is disassociation. I’ve felt both at times. The latter is terrifying when you don’t know what is going on and is an experience many neurodivergent people share, often happening when my brain feels overloaded with too much information to process or deal with. The first time I experienced disassociation was a few days after my friend died in 2014, at the time I didn’t know what was happening to me, let alone that it was a very normal reaction to a traumatic event.
I’m still at the early stages of grief, and I’m yet to navigate two funerals, but I do know that without being properly medicated for my ADHD I wouldn’t have been able to get through the last few months as well as I have done. I and my therapist is expecting a crash slightly further down the line, once the dust settles, the adrenaline subsides and it all hits me again. Everyone around me has been largely supportive, a network I’m lucky to have to help get me through the next few months, although I have encountered people who don’t know what to say. I speak for myself here, but saying something is always better than saying nothing, even if that something is a cat picture. The realisation that I’m never going to hear grandads stories about India again or show grandma my cats on face time, those things that once seemed like a small part of my life, feel massive now. It’s Cliche’ when people say, “it gets easier,” it doesn’t go away, levels of functioning will improve but it’s very much forever. Learning to live with grief is one of the hardest things we have to do.
One thing my grandad taught me is the importance of connections, he made friends everywhere he went, people were captivated by the stories he told and he really valued the friendships he made. I hope to continue to live up to those values as the next few weeks, years and months unfold. As I said at the beginning of this piece, you never know when things will change.
A Little More Understanding 