My Adult ADHD Diagnosis Story
Well, this is very personal and raw. It was hard at times, but if I don't tell you the honest truth, and try and varnish it and mask my symptoms here and now, what would be the point?
This post follows on from That Runaway Brain: What Exactly is ADHD? and The reality of living with undiagnosed and unmanaged ADHD
Right, let’s get into the meat of this. Trigger warning: mention of suicide.
It is accepted that you are born with ADHD and that it is highly hereditary. I will cover the genetics of ADHD in another post, but in brief, ADHD has an estimated heritability of 74% which motivated the (ongoing) search for ADHD genes. ADHD is polygenic, meaning many common variants in our genes with small effects combine to form our big ADHD picture.
ADHD starts in childhood
A tangent already, but I am starting here because it is important to start in childhood when you talk about your ADHD and to understand why. It needs to be established that your ADHD symptoms were visible before the age of 12 in diagnosis as ADHD starts in childhood. There are core things that need to be identified and you are scored accordingly (by a psychiatrist in the UK) according to the DSM-V.
How your ADHD presents is very individual but has commonalities with others. I mention this, because as I describe my experience you may not fully relate and discount your own. You may be inattentive ADHD and not relate to hyperactive ADHD and vice-versa. Or you may be like me, combination ADHD, with a delicious and sometimes head melting combination of both. To be diagnosed with ADHD you need to score 6/9 on either the hyperactive and/or inattentive scales.
How my combination ADHD looks
The combination may tilt one in favour of the other, or you may have the maximum amount of the two in diagnosis, which I did. It made sense to me as I am equally hyperactive and inattentive. When I am going, I can just keep going and for a very long time. People have always questioned where my stamina and enthusiasm comes from (it was just normal for me).
Equally, I can stay at home for days doing things that require little movement or doing little at all from an external perspective. I can watch a box set in one sitting. I can spend hours and hours and hours researching something of interest on my laptop. I can spend a long time day-dreaming. I can experience a lot of inertia and find it very hard to move at all. But once I get moving I am fine.
(Transitions, you see, they are tricky for us. I didn’t know this before though and I assumed it was a character flaw, as with a lot of my deficit traits. It’s what we do. I know now once I get moving, and keep moving, I am good. Getting moving is the problem. It is one thing to know it, quite another to do it).
Having inattentive ADHD can make visibility and diagnosis difficult
I am sharing all of this because this - even though this is all as a result of my ADHD - it made it difficult to get a diagnosis and to be taken seriously. Many doctors still think that if you are not bouncing off the walls, you can’t have ADHD. I have struggled with ADHD my whole life, I just didn’t know that that is where my struggles stemmed from.
I found it hard to connect with other people, especially in childhood. ADHD kids experience a lot of rejection because we don’t toe the line socially. We don’t see the rules, our brains won’t wait for them even when they do. If we see any injustice we have to speak out. That often makes us outsiders.
I knew that I was different and I felt defective in some ways. I was very anxious, but I mainly learned to hide it. That’s masking. I was very academic, it is a myth that you can’t be academic and have ADHD. Many surgeons are being diagnosed with ADHD in mid-life right now (I know this because my friend is involved in identifying them and helping them).
How medicine has approached ADHD
Medicine has only focussed on the ADHD kids that impact those around them from what I can see, and has treated those children for the benefit of those around them. This is changing, but was an appalling approach. I do think as a result that the existing ADHD data is completely distorted because they have completely ignored many people like me, even now when we are banging on their doors saying: “I am sure I have ADHD, please help me!”.
I got through my 20’s and much of my 30’s, relentlessly being late, forgetting important things, missing flights, forgetting my passport, brain fog, sleep deprivation, unable to motivate myself at work unless I had a deadline, living with the anxiety that results from the chaos surrounding everything that unmanaged ADHD presents. I was drinking too much on social occasions to manage my social anxiety and experiencing extended periods of depression which just seemed to get longer each time.
I had previously been diagnosed with anxiety and depression and taken medication for that. That medication did not work until I hit the maximum dose. I know now that the depression is caused by the effects of my ADHD, and so it was no great wonder that it didn’t. I felt numb emotionally though and after some time, I wanted out, I wanted to figure out why I felt like this. I wanted to get to the root of it. My doctor wanted me to stay on a maintenance dose of antidepressants for the rest of my life. I chose not to.
I almost gave up
That was about 16 years ago. I got tired of telling doctors that I felt so sick and so bad (I also had serious digestive issues for my whole life also which were getting worse, and which they initially thought were Crohn’s Disease). I was tired of being told to go home, that I had IBS and was depressed.
I gave up. I carried on as best I could, which wasn’t great. I was surrounded by chaos, I couldn’t move forward. I started to despair that I would never properly make anything of my life. That I would never have the financial stability to own my own home. Relationships broke down, work was dissatisfying. I was deeply unhappy. What was wrong?!
I started to read about women with ADHD in 2013 and the pennies started to drop. Drip drip drip and then the thundering sound of realisation. Oh my god, do I have ADHD? This sounds exactly like me! It took a while to accept it, because that stigma and all of that shame is brutal.
I started to understand what ADHD was
I started to read up about it, look into the science, understand that ADHD is so much more than the Bart Simpson stereotype and all of the awful misrepresentations in the media and on TV. I started to understand that the stigma was acting as a blocker, the fact that ADHD was the butt of the joke for so many people. I started to realise that ADHD was not only very real and serious, it was very real and serious for me.
I went to my doctor. She flat out told me I couldn’t have ADHD. I had a university degree, I had held on to a job, I had been in a long term relationship. Prisoners have undiagnosed ADHD, not professional women in their 40s. A lifetime of undiagnosed ADHD means I am well used to being misunderstood, and so I persevered.
Self-advocacy, I wouldn’t be here without it
I said to her: “Do you really think that I want to have ADHD? That I want this? I have read everything I can about it, the medical science, it describes me and my struggles.” She asked me to write her a letter explaining why I felt I had ADHD. (I am actually quite happy to have ADHD now but that is for another post).
I went home and poured my heart on to several pages. My everyday reality, my fears for my future, my fears for now. I can no longer work. I am so exhausted. I am anxious. Everything feels dark. I have rent to pay. I am so worried. I feel completely burned out. This has been going on for a long time but now it is unbearable.
I was spending a lot of time by myself at home. I was avoiding work situations and the perpetual question always offered with a smile: “So, what are you doing now?”. That sent terror through me because all I could answer was, if I was to answer honestly, “I can’t really do much at the moment. I feel very unwell and I can’t seem to figure out why.”
Finally getting referred
I went back to my GP, and sent her the letter in advance so she had time to read it. When she understood that my brother had died by suicide she took me more seriously (suicide rates are much higher in the ADHD population) and agreed that I did have many ADHD traits and that she would refer me.
I was relieved but it was short lived. I only ever received the referral letter. I never heard anything from the hospital, they never answered the phone or my emails over a year of trying, and all my doctor could tell me when I enquired was that the waiting list was long and getting longer. I was told 12-18 months at the start. 12 months in, it was probably 2 years more. They didn’t really know. I had no way of finding anything out.
The decision to go private, and the necessity of it
I decided I had no choice but to find a way of going private. I felt suspended in dark space and I needed to find a way out as so many other women seemed to have. My work had been compromised for a couple of years by now and I just did not have the resources, so I borrowed.
I made an appointment with a psychiatrist who specialises in ADHD. She sent me lots of forms that had to be filled out both by me and people in my life from my childhood. As I have lived away from Ireland for almost 20 years, I also had my current flatmate, a good friend who knows me very well, to fill out one too. I didn’t want to take any chances.
The formality of getting an ADHD diagnosis
The DSM-V - the diagnostic and statistical manual of mental disorders, 5th edition - is what is used to diagnose ADHD. The questions in the forms are mapped to the diagnostic symptoms.
It is reductive, it doesn’t mention anything about emotions because they are hard to measure, but they are key to ADHD. It is what is used though. It might be useful to go through this in another post in detail (I am studying it right now in my MSc in Applied Neuroscience, and it is interesting to know how it is perceived).
Being diagnosed mid-pandemic
I was diagnosed mid-pandemic (and I know lots of people have an issue with the word diagnosis in terms of ADHD and neurodiversity, but I don’t) and so it was all done over video. I sent all my forms to my psychiatrist by the date required, or at least I thought I had done, it turned out that one was missing. Shouldn’t that be compulsory for an ADHD diagnosis? I uploaded the missing one and I logged on at the time required. I had set many alarms and checked and checked and checked, fearful I would get it wrong and miss it.
My psychiatrist asked me lots of questions. Did I have a traumatic birth? (No idea, it turned out I did not). Were there problems in pregnancy? Again, no idea but I sent my mother a message to get confirmation on both. I was focussing as hard as I could and trying not to interrupt (which I failed, as it was noted in my diagnostic letter that I was interruptive).
It was clear I had ADHD
She mentioned after about 30 minutes that it was clear that I had ADHD and had had it since childhood, and that it was very disruptive for me. She needed to rule out anything else that could be presenting as ADHD though to be certain.
According to the DMS-V, these could be mood disorder, anxiety disorder, dissociative disorder, personality disorder, substance intoxication or withdrawal. There may be other co-morbids, but we needed to try to manage my ADHD first as a priority as it could be covering other things.
Towards the end of the appointment she told me about how I could proceed after this. That she would inform my GP of my diagnosis. That if I wanted to try medication, I could start a titration (a period where you trial different medications and work up to higher doses in a very carefully managed way).
She advised that medication would not in any way cure me, it was not a panacea, but that many people found it very useful and that it has a high success rate. What it could do is give me the headspace to do the other things I needed to do to improve my quality of life.
Life changes would be required
Exercise was discussed. I already knew how important that was for ADHD and had been going to dance classes up to 5 times a week before the pandemic and was now walking every day for an hour minimum. I needed to do a minimum of 1 hour exercise a day, to eat regularly and properly, to stay hydrated and work on my sleep was her advice.
If I was to take medication, there would be no alcohol or coffee (at least to begin, for the coffee, and alcohol only on medication breaks). I needed things to change, I needed hope, I needed possibility of a better future. I needed to recognise that medication was stigmatised and I decided to give it a try.
The call ended and I sat there at home alone. So, this is it. Now, I know. I have ADHD. What next?
And, while you are here!
I was interviewed by Jo Crawford on how the pandemic affected me as a neurodiverse women. Two other fabulous neurodiverse women are interviewed too, and Jo is herself neurodiverse.
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