Reframing your world after an ADHD diagnosis is tough; and that’s more than okay.

May be an image of Alice Hewson

I’ve been been wanting to write this for a little while, but I haven’t found the words, and I don’t know yet if I want to share beyond my small blog following. I’ve had the thoughts, probably too many thoughts, but the words, they only sound coherent inside my head. Shouting the loudest. Competing for attention. A little bit like my internet trolls, except I can’t block my own thoughts with a click of a button. Or can I?

A few weeks ago I wrote about Processing the answers: When everything starts to make a bit more sense, and things are much clearer, they really really are, but the world also feels more confusing and I know I won’t be the only person feeling this way. So, I wanted to write about it, because writing is the only way I know to process big feelings. I wanted to write this because I’ve been in neurodiversity circles for a long long time, I should know things, I shouldn’t feel this way. I’ve spoken at conferences, set up a support group, written about it all for years and led assemblies at my former school on mental health. People looked up to me, told me I’d helped them, told me I’d given their kids a sense of belonging. And all of this time I was just being me, I’d got to the stage when me was enough, I felt enough, I was valued. I had friends who I cared about, and that feeling was mutual. I was years on from feeling just being me wasn’t good enough. I told young girls about the pitfalls of looking up to older women, wanting to be them, believing they are better than you. I’d been there and I desperately didn’t want to be that “older woman” young girls look up to and aspire to be. Because I was just me. And I wanted them to be just them too. Except without the just, because no one should be “just” anything. I did all of this knowing I was neurodiverse and feeling very comfortable with that fact. I didn’t go through school with zero support, but it wasn’t exactly support that would win any awards either. I’ve known I was dyspraxic for years, I always knew I was different. Finding the words to explain has become easier as the time has gone by, but I always always knew. So why has an ADHD diagnosis in my 30’s hit me like a ton of bricks? I have never known that the “me” also included ADHD.

I know quite a few people, some friends and some I see online, who were diagnosed with dyspraxia as adults, or came to suspect it in adulthood. I felt in the minority, with my childhood diagnosis, and SEN statement. People told me how they had to reframe their whole life with a dyspraxia lens, they had suddenly in their 20’s, 30’s, 40’s or even older, been given a label to explain why they do things the way they do, how their brain works and that those feelings of inadequacy were for a reason. Hence my mission to support young dyspraxic girls to believe they are more than okay, because so many of us don’t reach that realisation until much later in life, if we ever do. I didn’t have the “Oh shit I’m neurodiverse, where do I find my tribe?!” questions, because dyspraxia is nothing new. I did have a period as a teenager of reframing what my life might look like as an adult, once I accepted I needed to understand this dyspraxia thing, that until then had been hanging over me like an unwanted smell, a period in my life that felt very much like a bereavement. I got through it by getting involved in as much of the neurodiversity world as I could, starting with tentatively reading the “dyspraxic teens” forum and lots and lots of therapy.

In November 2020 at the age of 31, I heard the words; “and that concludes an ADHD diagnosis,” I’d gone into the assessment suspecting this would be the case and hearing the psychiatrist say those words suddenly made my suspicions very real. Difficulties with executive function and my thoughts never shutting up that I just thought was a by product of dyspraxia, had its own name. I felt the feelings of relief and validation many people describe immediately post diagnostic assessment, texting my friend who’d been diagnosed a month before me the ‘good news’, “I’m so pleased you have that answer,” she told me. I then felt very very sad, that my gender, focussing on the diagnosis I already had and being predominantly inattentive meant my ADHD wasn’t picked up at school. I began to understand the feelings of those with a late diagnosis of dyspraxia. I found myself trying to look at things with an ADHD lens. It made sense, so much more sense. It also scared me, and explaining a well known diagnosis to people was tough, everyone has heard of ADHD, but it’s still stigmatised and poorly understood. I was not a little boy who can’t sit still, I don’t take part in risky behaviour, I’m not outwardly hyperactive, but the internal hyperactivity and restlessness is like having a constant night club in my head. How do I explain something to people they can’t see? You can’t see my dyspraxia, but at least most people can tell when my coordination has gone to pot. I’m not lazy, I’ve never been scatty, or disorganised, or uninterested, I just have too much going on in my head, to decide what is important, or what needs to come first. I’m not rude because I haven’t replied, I just got distracted. ADHD has been much harder to explain than dyspraxia. I understand that dyspraxia is poorly understood, but ADHD, especially in girls and women, is very much underrepresented in the conversation too. This is before we get onto discussing medication. I’ve been off meds for a week because I suddenly got very very scared, partly down to hormones but mostly down to the stigma of taking stimulants to make my brain quieter. The meds really really helped, I have never felt so quiet and still. The kind of eerie quietness of the countryside or the moon. I mean, I’ve never been to the moon but I don’t imagine there’ll be any noisy raves up there.

Following diagnosis I joined a few Facebook groups and started following people on twitter, I was welcomed into the ADHD tribe, I’d found my people, others who understood my brain probably better than I did at the time. There were explanations for everything. People seemed to be really owning their diagnosis, just like I did for the young dyspraxic girls. I didn’t feel I owned anything at the time, it felt like unmedicated ADHD owned me. I also started feeling overwhelmed by advice from all directions. On starting Elvanse, I made the mistake of searching that specific medication in a Facebook group, getting all sorts of “this has changed my life” stories to “this was the worst thing I’ve ever done” side of the spectrum. I then decided to take time away from this new community, and focus on speaking to friends, and working out what was right for me. I’ve also read several pieces about an ADHD diagnosis in adulthood being life changing, I read about the positive impact knowing about ADHD had on people and a piece about ADHD in women that really made me reflect on my own life. I felt that these people were speaking to me, yet at the time, I was still confused about how I felt about it all. Alongside the listicles of “THIS IS HOW TO CONQUER ADHD” or “TAKE THIS VITAMIN AND YOU’LL FEEL ON TOP OF THE WORLD.” There wasn’t, and I feel like I’ve searched all of the Internet, any pieces depicting how I felt, the confusion, the fear, already understanding neurodiversity, yet feeling lost. There was nothing for me. I didn’t want to go into battle or “conquer” anything with this new diagnosis.

My feelings, and I’m sure many of yours do too, stem from the need for things to be accessible, not having to over-explain your difficulties in situations where you’d prefer not to. Train stations, inside taxis, at work, at the shops, at parties; places where the ground swallowing up is often preferable. Many of us don’t want to explain intimate details of our medical history to complete strangers or people we don’t know very well, yet because our differences aren’t understood we often find ourselves in situations without a choice. With my new diagnosis, alongside the feelings of relief and pride, I just saw more explaining to do. When you’ve had a life time of explaining, this prospect just feels exhausting. I didn’t want to have to send an email to my boss and say “I have ADHD now, (well not now, I’ve always had it), this is what I need.” I didn’t want to sit down with my family to explain the benefits of taking legal speed. I didn’t want to send an email to someone who supported me a lot when I was younger, to tell her I have ADHD, and that explains X,Y,Z. It all felt too much, and I’m done with offering those explanations, just to be on a level playing field with everyone else. I’m mostly drained with having to understand more about my brain, and that’s okay, we can’t all be bouncy about a new diagnosis all of the time. I can assure you, none of us ever are, and if we appear that way, our masking skills are on point. I’m very good at appearing a certain way, to people who need to see me that way, and leaving the “real me” for those who can cope with that side of the coin.

An ADHD diagnosis in my 30’s has made me evaluate not just my world, but the world we all inhabit and what we want from this world. I remember years ago, a friend told me in the middle of an anxiety attack, “you will be okay”, I didn’t believe her at the time, how could I be okay, when my world seemed to be falling apart? But I was okay in the end, with intermittent periods of feeling like everything is imploding again, and I’m confident to tell you that with several ND diagnosis’ or one, you will be okay too. The world needs to adjust to our way of being, not the other way around.

This entry was posted in ADHD, Dyspraxia, Education, Mental health, Writing and tagged , . Bookmark the permalink.

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