I may not be a doctor but…
I’m almost certain self-diagnosed ADHD saved my life. A response to THAT Guardian article.
This post originally appeared in The Joy Thief newsletter. To get more articles like this straight to your inbox, subscribe.
Barely a few days after ADHD awareness month ended, a mainstream newspaper published an article dripping with ableism and the perpetuation of stigmas attached to the ADHD community.
Medical diagnosis being easy to obtain.
Medication misuse.
‘Overdiagnosis’.
All these myths flowed through the veins of the article, leading any unknowing reader to believe that ADHD and obtaining medical diagnosis is as easy as floating down a river.
Life is bathed in nuance and privilege, so I’m willing to accept some people have few, or at least less than average, issues getting diagnosed with ADHD. However, there’s mounting evidence that medical diagnosis depends on various intersectional factors.
I’m also willing to believe there’s variation in the struggles of ADHDers, with some people being more significantly impacted than others. ADHD is, after all, a spectrum of traits which can be experienced at varying degrees of severity.
Basically… I’d bet good money that people who find living with ADHD easy and get diagnosed ‘just for the drugs’ are few and far between. These myths, along with the myth of overdiagnosis, are abelist lies, embedded within our institutions and society and like other isms and obias, to steal our joy.
My experience with ADHD, especially undiagnosed ADHD, and obtaining medical diagnosis is anything but easy. It is a daily struggle, and my path to both self-diagnosis and medical diagnosis has been more like swimming upstream in a river made of drying concrete.
I was 12-years-old when I was taken to a doctor for self-harm.
I was a child.
It was the first time I’d self-harmed and it was the first of many GP visits to come.
I had been unhappy, miserable even, for years already. I didn’t fit in, I barely retained friends. I argued with my parents constantly, for the first time my grades were dropping and I had a hatred for myself slowly burning away at my self-esteem. It sounds like normal, cliche teenage stuff, but I didn’t see evidence of this among my peers until we were on the cusp of adulthood, grappling with clingy parents who wouldn’t let them make their own decisions and mistakes. At 12, I was a child who’d barely crossed into my teens and I had lost hope in being like the kids around me, in being less weird, less loud, and less ‘naughty’. I realised ‘trying harder’ to make ‘more of an effort’ wasn’t working and I turned to hurting myself instead — it shut the noise off in my head and I was hooked.
As I sat with the doctor, I watched my mom crying. It was the second time I’d ever seen her cry and I felt the guilt squashing me down, swallowing me whole. My presence in his office should have been a major red flag, after all how many 12-year-olds end up in the doctor’s office with self-inflicted injuries?
That day, a medical professional had a child in his office, unwell and struggling enough to harm herself. I should have been supported. It should have been taken seriously. Instead, he asked me if I would do it again and after I shook my head, he sent us on our merry way and I was thrown back to the council estate from whence I came, with my council estate mother. Had we been middle-class with ‘better’ accents, visiting a doctor’s surgery in the ‘right’ postcode then, just maybe, things would have been different.
They weren’t different though and I lied. I did it again. And again. And again. And again. And again. Every year from 12 to 30.
By 15, I was drinking alcohol regularly. Not just a few cans of cider down the park, I was drinking until I was sick, drinking until I passed out, drinking until I had to be carried home. At 16, I’d started smoking weed, and by 17 I was smoking it every day.
Normal teenage stuff, right? Wrong. Most of my peers were chasing excitement, a buzz. They were amplifying the fun and frenzy they felt. I was chasing anything to numb my mind, to find silence and stillness, to take a breath away from the everyday mental chaos I struggled to navigate.
Alcohol and weed soothed something in me, dampened the noise and bouncing thoughts, hushed anxieties, self-doubt and self-hate. Being sober merely meant all those thoughts and feelings came flooding back into my mind. That burden is so much heavier when you’ve put it down for a moment to rest. Instead of picking it up and struggling with it, I got high or drank whenever I could and self-harmed when I couldn’t. These were my coping mechanisms and they got me through each day and week and month with a stillness and serenity that multiple types of antidepressants and therapies never did.
At 17, I was back in front of a doctor who proclaimed me depressed. Apparently, I was too young to take medication, so every week I attended therapy. It didn’t fix any of my struggles. At 20, I was taking SSRIs. It didn’t fix any of my struggles. At 25, I cried whilst telling a doctor I wasn’t depressed, but all he did was write me yet another prescription for drugs I knew, based on past experience, wouldn’t fix any of my struggles.
I thought I was doomed until, in autumn 2021, ADHD became an answer to everything. For the first time in more than 15 years, everything clicked. Now my life exists on either side of that moment. Before, when I was failing. And after, when society was failing me.
Excited that I might finally, FINALLY, be able to move on with my life with answers and support, I requested an ADHD referral. Four months passed without a word, so I requested an update from the doctor. They had received a rejection… ‘not enough information submitted’ despite having given information and the doctor not asking for anything further. When they gave me a copy of the letter, it was stamped as received in December. It was March. They hadn’t bothered to notify me for 3 whole months and the knowledge of this neglect, this over sight, made me feel like I was falling down a never ending well.
I tried again, this time providing 3 pages of reasoning for the referral. I received a letter 5 months later, advising of a 3 year wait list… I should have been devastated, but I only felt relief; they had acknowledged my symptoms warranted assessment and that was a weight of self-doubt lifted.
Perhaps I didn’t feel disheartened by the wait time because, prior to receiving the letter, I had heard about the Right to Choose scheme, which allows you to request a referral from your GP to an NHS or NHS-contracted service of your choosing. The online ADHD community is wonderful, and through them, I found a service with a 6-month waitlist. I’ve heard of people having to beg their GP to refer them and being refused. With another dose of luck or perhaps privilege (my accent has diluted since I was 12 and I’m living in an area that is slowly being gentrified), the GP submitted the referral with only a few admin issues to speak of. As of writing this, I’m 2 months into the wait time and hopeful for a spring 2023 diagnosis, which will bring my total wait from first requesting a referral to approximately 18 months.
I’ve found a community amongst neurodivergents online and I’ve been able to learn about different ways of managing ADHD and the traits that go along with it. I’m able to be kinder to myself for my ‘failings’ and it is less and less often that I see myself as a problem or ‘too much’. I can hold empathy and understanding for myself and those around me can do the same, creating stronger, more resilient relationships with myself and others.
I haven’t drunk alcohol, gotten high or self-harmed since I self-diagnosed.
Self-diagnosis saved me.
Imagine how much easier, less painful and more joyful my life would have been, if that first trip to the doctor had been treated as the red flag it should have been. Imagine all the opportunities there have been for diagnosis and support over the 15+ when I have cried and begged for help… Only to be denied by a medical system unwilling and unable to help me.
The ADHD community want this medical failure to end. For that, we need quick access to medical diagnosis and professional support. We need you (especially medical professionals, teachers, educators, managers, business owners, friends and family members) to understand the ablism of the myths surrounding ADHD.
We need you to understand that diagnosis saves our lives and makes way for joy.
