You Have ADHD part 1: Life Before Diagnosis

I recently received an ADHD diagnosis. This didn’t come as a huge surprise to me, in fact it was something I decided to explore because certain behaviours of mine seemed to fit with everything I’d read about ADHD, and the experiences of people I know. I decided to be open about this on my blog because I am open about my life as a blind person, and because ADHD seems to inform a lot of the person I am, though this is a complicated statement to be making. I’m going to write several posts about my ADHD diagnosis, in the hope that they may help others in a similar position. I want to start by exploring what life was like for me undiagnosed and why I decided to explore a diagnosis in the first place.

Being undiagnosed meant that I was living in a constant state of stress. I was ashamed by the chaotic state of my life. Why couldn’t I keep on top of even the most basic of tasks? Why was it so difficult for me to remember to check in with a friend, order groceries, or tidy my room? Why could I spend hours and hours reading books, but not doing any of my work? Why was I such a failure?

I was unable to stick to deadlines, even when I knew that they were essential. I want a career in academia and yet when faced with a piece of work, I couldn’t seem to do it. I’d overflow with ideas during the lectures and seminars, to the point where it was difficult for me to stop talking, but when I sat down to begin a piece of work I couldn’t do it. Suddenly it felt like an obligation, a task which must be completed, rather than an interesting discussion. Any ability I had to interact with the material was gone and I was left fidgeting around in my seat, counting down the hours until the deadline.

Sometimes this meant I would ask for extensions. This happened more than it should have, especially during my master’s degree. Eventually the pressure of the deadline would flip a switch in my brain and I’d write 4000 words in 12 hours, only leaving my seat to drink water or go to the bathroom. My work was always decent, but I know that had I been able to take the time to focus on the assignment and give it the care and attention it deserved, it could have been excellent. This is part of the curse of my ADHD, and why I believe it went unnoticed for so long. I was always able to produce decent work. Work which was even quite good at times. And so nobody really noticed that there was anything wrong.

My interactions with other adults were as poor as my organisation. I loved talking with other people, and yet I’d interrupt them constantly, so excited by our conversation I couldn’t wait for them to finish. I knew that it wasn’t appropriate behaviour. And I was deeply interested in what they had to say. But I’d feel like all of my thoughts were pushing on my ribs and my brain and they just had to come out. I’d feel guilty and ashamed of my inability to function; sometimes this meant that in group situations I’d say very little out of fear that once I started talking, I’d never be able to stop. I’d lose the thread of conversation and appear to be bored with what the other person was saying. In reality I was usually so interested that it opened up other avenues I wanted to explore, but they then lead to new ideas, and my brain became such a tangle of thoughts I couldn’t pick out what they’d actually said to me.

I also behaved in an impulsive and reactionary way. I’d do and say things and later regret them. And I’d also feel guilty because I’m a grown-up who has to take responsibility for my behaviour. I know I’m capable of logical thought and calm reflection, and yet in the moment I didn’t seem to have the ability to do that.

The disorganisation that comes with living with ADHD manifests itself in ridiculous, complicated ways. I’d struggle to organise any of my academic work because I would create overly complex systems that I couldn’t keep track of, or no system at all. Knowing how to organise documents was part of the problem. I might spend three hours reading about organisation systems, but I couldn’t synthesise that information and turn it into anything useful that I could apply to my own life.

I have no concept of time. I could have spoken with someone three days ago or three months ago and I’d struggle to know the difference. From day to day, I had no idea how long it had been since I last met with my dissertation supervisor, and what exactly I was supposed to be doing with my time. He would email me with instructions that I’m sure were perfectly clear to everyone else, but seemed so overwhelming to me I would then close the email and ignore it out of fear. I ended up speaking to him about this, and he was really understanding and would give me tasks that were clear to me, checking in to see how I was doing.

The same was true for friendships. I had no idea when I’d last chatted with a friend, or if they’d told me something important. I’d forget dates of particular significance and would often fail to check in with those who were experiencing difficulties. They thought I didn’t care, and why wouldn’t they think that? I hadn’t bothered to reach out. But I did care, I cared so much it felt like I’d break apart if I had to hold in these feelings. But I also wouldn’t remember. I truly don’t know how both of these things can be true simultaneously, but they are.

I was painfully, obviously unreliable. I’d agree to do something with every intention of doing it and then forget. This resulted in other people quite reasonably being irritated with me or not taking me seriously. Their blame then made me feel guilty, which would make me over commit again, resulting in an even more dramatic cycle of failure and subsequent guilt. I would start projects which would consume my entire interest, only to wake up one day and find that I had no motivation to continue. There is a graveyard of such unfinished pieces of work in my documents folder on the computer. I keep telling myself that I will return to them, but so far I have not.

My impulsive behaviour led to even more poor decisions being made. I’ve read that adult ADHD can lead to excessive drinking, drug taking, and unsafe sex. All of these have been true at various points in my life. This isn’t to say people who don’t have ADHD never do these things, of course they do. But for those of us living with ADHD it’s as though we have a compulsion to make these terrible choices, even though we know it’s wrong, even if it isn’t really what we want to do. I love quietly reading books or talking to people about my interests, and yet I’d find myself in a bar, taking god knows what from a stranger, because I couldn’t say no.

Drug taking, partying, and questionable sexual encounters aren’t especially advisable on their own. But when combined with my already shaky ability to keep on top of academic work and managing my personal life, things could start to slide very quickly. I’m lucky that my life never entirely fell apart. I think the thing that saved me was my inability to stay in one place for more than a couple of years. I’d slip into a comfortable routine of slowly destroying my life, only to decide I fancied a change of scenery. And off I’d go to pastures new, where for a while at least, I’d keep on top of things.

Once I’d lived in Leeds for several months I was faced with several irrefutable truths. The first was that I wanted to stay there. I’d very impulsively applied for a PhD, and to my shock and delight had been accepted. I wanted to complete the PhD and to do it well, but the second truth that smacked me uncomfortably in the face was that if I didn’t sort out my life, that wasn’t going to happen. I couldn’t continue to cling on by my fingertips, hoping that with a last-minute burst of inspiration, I’d complete my work. A PhD doesn’t work like that.

I also realised that I was meeting people who I really liked and respected. I didn’t want them to see me gradually dismantle my life in front of them. I couldn’t cope with the idea that the academic staff who had been so kind and supportive would look back in several years time, shaking their heads with disappointment. For the first time I’d found somewhere I truly felt like I belonged. I was going climbing several times a week, enjoyed all of my classes, and wanted to do something that would actually lead to progress in my life.

And so I finally accepted that I needed a diagnosis. I’m going to talk about the process of getting that diagnosis in a future post, but for now, I hope this explanation of why I decided to seek it is helpful for someone who may be in a similar position.

I talk about all of my behaviours in the past tense, as though getting that diagnosis has changed them. But it hasn’t. It’s something I’m actively working on, and hopefully with therapy or medication or a combination of these things, I’ll get a better hold on things.

Other Posts in this Series

• You Have ADHD Part 2: Hyperfocus
• You Have ADHD Part 3: Journey to Diagnosis
• You Have ADHD Part 4: Starting Medication