ADHD – Being Diagnosed at 29

For the opening post of this blog I would like to tell the story of how I came to be diagnosed with ADHD at the age of 29, from discovery to diagnosis. It’s a slightly longer read, so I have divided it into sections. So, go and grab a brew, settle in, and enjoy (hopefully)!

Realisations

In early 2021, I had seemingly hit a wall. A wall which was preventing me from sitting down and completing the assigned work on a Masters course I had started a few months earlier in September. The intention being, that the course would be the platform that I would use to move onto a PhD. The situation was bewildering because I experienced a complete sense of powerlessness. Having an appreciation of challenges (the bigger, the better) and the opportunity to problem-solve becomes largely obsolete when the challenge you are facing is within you and your mind. It felt like I was simply a spectator to my own life, like I’d taken agency away from myself.

To go from being someone who was a performing student, who has the ambition to progress further into academic study. To one who is in a position where they are unable to submit work because they cannot physically bring themselves to sit and complete the assignments, is quite a seismic shift. A shift which was completely inexplicable to me. I simply could not understand why I was procrastinating and avoiding the study work to the point of paralysis. Work that I genuinely found enjoyable and interesting; not simply something that was needed in order to get the qualifications. Obviously, procrastinating on things which you need to do, but don’t really want to do, is part of the human condition. It was in the procrastination of things that I really wanted to get on with that caused my exasperation.

The whole situation was inexplicable to me. Because of this, I almost felt ridiculous in describing the situation to others; “So, I just can’t do my work. But I cannot explain why”.

As someone who had consciously, and sub-consciously, crafted an identity in which intellectual curiosity and academic achievement were fundamental pieces. Being unable to complete assignments and barrelling towards failure on the Masters course was particularly crushing. It was such a source of embarrassment and shame for me that I felt paralysed to bring it up and address it openly with everyone.

My first possible explanation that did make some sense was that I was dealing with some crippling perfectionism. Socially prescribed perfectionism, to be more precise. I had a few counselling sessions through the university’s wellbeing services, in which we started to unpack and work through this perceived perfectionism issue. Now, these few sessions were useful in that they sparked an awareness in really considering my sense of self. Despite, in the end, my feeling that perfectionism in of itself did not quite fit in terms of explaining things.

It was a few weeks later, around mid-April last year, while in a standard session of procrastination that I stumbled across the Reddit post which really started the journey towards the typing of this very post. The post in question was one in which the user vented their frustration in being unable to get things done in their life. Importantly, these were things that they were really wanting to do. Reading the post I felt both recognition and empathy for the poster and their struggles. It was reading the top comment in reply to the post where things changed. The commenter suggested that the poster should explore the possibility that they actually being dealing with undiagnosed ADHD.

“ADHD? As in, Attention Deficit Hyperactivity Disorder? This to me does not sound like that at all.” At least, that was my initial reaction. A reaction built on the fact that my understanding, well, belief, of what ADHD it was the stereotypical view that many people hold. That ADHD was something that only young boys who could not sit down or be quiet could have.

I was curious. I also knew that I was not going to be returning to my university work any time soon. So I clicked through the link to the ADHD subreddit community that the commenter had included in their reply.

I first went to the general information area of the community to locate information and resources which could explain what I was missing in my understanding. It turns out I was missing quite a lot. As I began to read about the different presentations (or types) of ADHD, I felt something in me change. That a small door somewhere was finally being opened. The more I read and the more I understood; the more things were beginning to make sense to me. Jumping back onto the subreddit page, I read through the posts. Each one building on the realisation generated from the one before.

It was an almost transcendent experience. Suddenly, it appeared that the inexplicable had actually become explicable. The sense of relief, and excitement, that I had finally identified the inner barrier that had been holding me back for as long as I could remember, was palpable. It was then, looking at my life through the paradigm of ADHD, that I made sense, to myself.

This was not just a realisation that I may have been living with undiagnosed ADHD for 29 years. But layers and layers of realisations. Such as my incorrect understanding of what ADHD was; looking back into my past and scenarios making total sense; that I may actually be wired differently to others (rather than this just being a thought in my mind).

Part of me believes that my subconscious mind always knew and tried communicating this possibility. As for the longest time I had this occasionally recurring questioning thought where I asked: “What would be like being someone who was disabled in some way; but, that everyone apart from the person themselves was aware of this?” A kind of neurodivergent retelling of The Truman Show. That people were having to act around you, but not informing you of the fact there is something you need to be aware of.

Going through the diagnostic process

Once I fully realised that I may have actually identified that invisible inner barrier that I felt had been holding me back for years, for as long as I remember, I quickly moved to seek professional support. I was particularly interested in seeking a diagnostic assessment for the acknowledgement whether I was barking up the wrong tree with this whole effort or not. Plus, I was in a massive hole with overdue assignments, so any help may have had the direct benefit of helping me crack on with my work.

I contacted my GP surgery to speak about the possibility of getting referred. When I described the symptoms (and impairments) I was experiencing, in a somewhat rambling fashion of course. The GP replied, saying that I didn’t necessarily have all of the symptoms for ADHD on the list they were looking at. Which was the list of symptoms for diagnosing a child with ADHD. Now, to the GP’s credit, they did accept that this was not their area of speciality, so they referred me to the local specialist clinic. Which is ultimately what I was wanting to get out of the appointment. But it does highlight the issue of awareness of the potential presence of ADHD in adults. (Of course, there could be different issues/barriers facing others, such as gender or racial biases, for example).

So then what came next was the confirmation of being on the waiting list for an assessment (through the NHS). Which I was told would be a 4-5 month wait. To some, that seems a ridiculously long time. However, I recognised that people could wait years for an assessment, so a few months did not seem too long. Plus, the sense of relief I was feeling that this was the right path really took the edge off any potential impatience.

The 4 to 5 month wait estimate I was given meant that I would have hoped to have been contacted about moving things forward in August-September. When the calendar rolled over to October and there had been no correspondence. I was a little more anxious about things, because now I had entered a kind of no-man’s land where I did not know when, or if, I would be contacted again. So I reached out just to gain some clarification on my position on the waiting list and was assured it would not be too much longer, no more than two months. Additionally, I was sent some forms to fill in, which included a self-assessment reporting form. I got those filled in and returned to the clinic.

Then another wait.

The additional 2-month timeframe I was given pushed to the end of the year, so I wasn’t necessarily expecting anything major to happen at that time of the year anyhow. I waited to reach out again, till towards the end of January of this year. Again, I was told it would not be long, and this turned out to be correct, as a week later I received a call from the clinic. A call I initially missed; which of course that was going to happen. As soon as I saw the missed call and message, I phoned back. There was an appointment available the next week if I wanted it. I could not agree faster to the scheduling of the appointment. Breathing became a little easier after putting down the phone.

So, here we were, 9 months later after joining the waiting list, the appointment for assessment was here.

I’m not mentioning the length of the wait for an assessment as a purposeful attack on the clinic or the NHS at large. It is completely understandable due to the event of the last two years, and chronic underfunding of this area of healthcare, that waiting was going to be increased. Rather, it is simply to make people aware what they themselves, or someone close to them, may have to prepare for, if paying to go down the private route for assessment is off the table.

In some ways, having to wait a little of time has its benefits because it gives one the time and space to really reflect upon the issue. To almost come to terms with the possibility of ADHD diagnosis before any assessment takes place. For me, this was particularly helpful on the point that ADHD has a lifelong presence in people’s lives. Having the time for that to really sink in for me was useful. If I had very quickly an assessment and diagnosis, the emotional impact of those would have been much more unpredictable. Frankly, I could picture there being an enhanced sense of imposter syndrome. That I would say to myself that it was pure chance and luck that I was diagnosed, rather than legitimate causation and reasoning. Which obviously is not a healthy or helpful way of thinking.

The Assessment

Once the assessment appointment was scheduled in, one would have thought that it would have given me that spark of motivation to finish compiling my notes and thoughts. Of course, that did not happen. In fact, in that week-long wait I became pretty dysfunctional. My mind, oscillated between relief about finally having the assessment booked in, and anxious thoughts that all of this was a fool’s errand; that I actually was just a lazy and hopeless plonker.

My assessment appointment was virtual, and was scheduled for two hours. The first hour took the form of an interview with the psychiatrist. I will not get in to specifics with this because I do not want to unintentionally influence other people’s experience of the process. However, in broad strokes, the interview is about building out a more complete picture of one’s developmental history, family/friend dynamics, present circumstances, etc. At the end of the interview part, we took a break for around 10/15 minutes, during which the psychiatrist spoke with a consultant to discuss the interview as well as the self-assessment form I had previously submitted.

After the break, the psychiatrist went spoke through the process that they and the consultant went through in terms of working through my responses in the interview as well as the self-assessment form. Moving the camera so I could see the score chart they were working from. The psychiatrist went through the different categories and scores which I received. Which ended with the highlight of my T Score for ADHD being ‘almost off the scale’, as the was no higher score available. That was quite something to hear. After taking a few seconds to process that information, the psychiatrist delivered the line I had been anticipating, for longer than I was even consciously aware of:

“I can officially diagnose you with ADHD of the primarily inattentive type”

Relief just washed over me in that moment, I could feel a weight being removed from my shoulders, a tightness between my shoulder blades being released. Finally, finally I felt acknowledgement and clearer understanding of how I am who I am. It was not just the case that I was a lazy, useless, plonker which what was my frequent assumption for such a long time.

Right away the discussion went to treatment options, and beginning with medication. This included the nature of the medication, what the medication options were, and what the possible side effects could be when taking them. Once we came to an agreement, the first prescription was written up and a check-in appointment was scheduled for a few weeks down the line.

So not only was there the relief in the feeling of recognition from the diagnosis, but also the relief of right away there being the movement and action towards exploring what could be done to alleviate the problematic symptoms and proceeding impairments.

So, there we go; that is my tale, a potted history, of being diagnosed with ADHD at the age of 29.

Before you go

There is quite a bit to be said about the impact(s) of getting a ADHD diagnosis later in life as an adult, as opposed to having it occur much earlier in life. I am going to dedicate exploring and writing about that in a separate post in order to give the discussion the space it deserves. (I will provide a link to that at the end of this post once it is published).

I am conscious of the fact that, true to form, I have rambled (rmbl-ed, even) on for long enough. If you have managed to read this in one sitting, you have my gratitude. When it comes to moving things forward positively for folks who are neurodivergent, or just really struggling with their mental health, awareness building is such a foundational part of the effort. It’s my hope that my wittering here will raise some awareness at least.

I accept that this post is not perfect. No, especially as someone with ADHD, it is better than perfect. It is done.

If you feel that you relate closely to the experiences which I have written about, particularly with regard to realisations. I definitely recommend seeking out more information, reflecting on your own experiences, and most importantly: seeking professional support. Everyone’s life experiences and circumstances are completely different, so it is vital to seek more personal support rather than rely on more generic information which can only advise and help people to a point.

Part of what I would like to do with this blog is to experience and explore how one does move on, and build, from being diagnosed with ADHD. If, reader, you feel that this would be something that you would find informative and useful, please stick around and watch this space.

Stay wholesome,

Ben.