What’s it really like to be neurodivergent? What’s it like to have ADHD or high sensitivity? How is it to live with epilepsy or Ehlers-Danlos Syndrome? How does it impact people’s work, relationships and sense of self?

In this series of interviews we hear from real people, discussing many aspects of their neurodiversity. I hope you enjoy their stories and through them find deeper understanding of yourself and others.

Please note the following interview contains swearing.

Interview #1

Senior Manager in Higher Education, received diagnosis of intermittent central suppression in early-20s and assessment of ADHD and slow cognitive processing in early-40s

How do you define your neurodivergence(s)?

I link mine to my recently diagnosed specific learning difficulties (SpLDs) – ADHD and slow cognitive processing. The two combined in particular contexts make everything harder. I also interrupt and I’m impatient!

I discovered my ADHD through a fortuitous encounter. There was a university student struggling with the support they were receiving from the disability service and they were talking about how they felt their SpLD was not being well catered for. How they described themselves sounded a lot like me and so I started reading into it. Then I had a formal assessment through work.

I found out about both ADHD and slow cognitive processing when I was in my early 40s. It was a combination of feelings. It was great that it felt like everything came together, made sense and explained so much. It was like an epiphany, but not quite so grand! I also felt very sad, like I’d struggled all those years beforehand without knowing why and that I’ll always continue to struggle.

I first discovered “intermittent central suppression” when I went to see an optometrist. I’d been struggling with light sensitivity and thought something was wrong, but it ended up being a kind of “accidental diagnosis”. One of my eyes, or my brain linking to my eyes, doesn’t function every few seconds – my brain literally switches off so I can’t follow what I’m reading. This was almost 20 years ago now, and at that time one of the treatments was a gadget that clicks every few seconds to switch the brain back on. I’d totally forgotten about that…

I think the ADHD and slow cognitive processing describe most of my neurodivergence, but there are also things I experience that I haven’t read or heard about yet. It’s hard to distinguish what’s what – is it ADHD, my upbringing, just the way I am, etc.? – and there’s not really an impressive or accessible body of research about the complexities of neurodiversity yet.

ADDitude is really interesting and there is a lot about it being on a spectrum. For example, some of my symptoms are more severe and some are more mild. Someone else I know with ADHD is more hyperactive than me, but they do their work in a more proactive and organised way than I can – I’ll always be working the night before to finish it.

There is definitely difference within difference!

How did you experience finding out about your neurodivergence?

There was definitely the feeling that everything came together and I was making sense of the jigsaw, but doing the test I felt pretty crap and like I’d fucked up something simple because I couldn’t do a certain part of the assessment (because of the slow cognitive processing). It was finding a part of me I didn’t know, as I was trying to seek and understand myself better.

Even though the diagnosis felt like everything came together and it was a good feeling, I was also really upset and cried a lot. I think because it took me back to my younger self and struggling a lot without knowing why. If I’d known then, it could have been different. I felt sadness for my younger self.

I was already having therapy but this made me upset about certain parts of myself that I couldn’t “fix”, that I had to live with and continue to struggle with. That I have the thought “I’ll never be able to do that” still makes me upset. To know I couldn’t be how I wanted to be in my life was devastating.

I wanted to be happier and to like myself, to be calm and have serenity. I didn’t want to keep hurting people through my behaviours. And I didn’t want to keep struggling. And I know that I am not going to stop struggling, that things will always be a struggle for me.

I know if I could manage my symptoms – by looking after myself, self-regulating, eating and sleeping better – that it would be less of a struggle, but I’m terrible at all that precisely because I have ADHD. I forget to eat and I can’t get to sleep. Sometimes it’s hard to tell what’s me and what’s my difference – then I don’t know what I need to work on!

In Divergent Mind, Jenara Nerenberg makes the case that all neurodivergence is linked by sensitivity. How would you describe yourself in terms of sensitivity?

The older I’ve got, the more sensitive I think I am becoming. I don’t think I was as a kid – but maybe I was…

I think that’s partly to do with being with an ex-partner, who made me realise my sensitivity, because they had insight into sensitivity, so it was around more in my awareness. A previous partner before that used the phrase ‘needy’ to describe me, and I wonder now with hindsight whether they actually meant sensitive. However this made me shut down and withdraw as I didn’t see myself as that, so I wasn’t able to explore this at that time. It made a difference for me who I was in a relationship with and what I thought about myself in terms of sensitivity.

I know that HSPs can be very sensitive to light and sound. However my previous definitions were based on the negative assumption of being oversensitive. Somehow I viewed being sensitive as negative - I haven’t had a very affectionate relationship with sensitivity.

This is my ADHD: if I’m having a meeting in a café with a colleague, I can be easily distracted. But other times it doesn’t happen, and I’m not sure why. I am particularly sensitive to light – I used to have to wear sunglasses even in the evenings. Going out for dinner and people moving their chairs is awful – the acoustics in some restaurants are terrible! Here’s me trying to relax on date night and then… [insert chair scraping sound across floor]. But for some reason the cinema is fine and I’m not sensitive to it at all despite how loud it is!

What do you find most challenging about your neurodivergence?

I don’t know where to start – well that tells you a lot!!

Hmm… it’s the simple things - I can’t get my fucking washing done! Or tax my car. Or pot a plant… or anything really… I struggle most with work and studying, but day to day chores and tasks can also be really challenging. I struggle with understanding and comprehension because of the ADHD memory deficits. I can’t remember what I’ve read or make links. And together ADHD and slow cognitive processing compound the difficulty, plus I’m a bit of a perfectionist so it makes the whole thing very painful.

I feel incapable, especially at work. I love visuals but processing information is so hard. For example, I’d happily be in a supermarket just to look, if I didn’t have to go shopping. But ask me to buy 5 oranges, a toothbrush and some bread and I’d feel completely overwhelmed!

At work I often feel inadequate. We have a new team member who just joined and they are really fast and a completer-finisher and I think I’m the opposite! I’m surrounded by people like that at work – fast, efficient, completer-finishers who get the tasks done. It’s unearthed my inadequacies, as I perceive them. My colleagues are just too good and I feel like I can’t keep up, I’m behind. I try to accept that I’m not like them and I can’t be like them, and that I bring something else to the table… but honestly I don’t really know what I bring. If I knew what I was good at then maybe that would be different, but I guess the things they are good at are what are most highly prized in the workplace and our culture.

I suppose I’m good at work relationships, I’m well-networked, and I can manage conversations with different people. I know I bring these skills, but I don’t know more than that. I guess it would be worse to work with people who are incompetent, but hell, it feels like shit for me! Sometimes it gets too much and I cry – then I feel oversensitive.

Decision making is so hard. I was meant to be planning something for my birthday and I just couldn’t make a decision. The decision of whether or not I wanted to go out for dinner, that took days! After a long time, I finally decided where I wanted to go and I called to book… but the one time I made a decision, they were closed on the day of my birthday. So the decision making thing is so hard.

What do you consider to be the strengths and gifts of your neurodivergence?

My immediate response is “none”! And then I wonder if my strengths are to do with my ADHD, or if they are strengths despite having ADHD. I think I’m good with people – that’s probably my key strength. I know lots of people talk about creativity with ADHD but I don’t think I’m that creative – though that could be my upbringing which didn’t especially encourage creativity. Perhaps I have a creative way of thinking…

I know I feel strongly about principles and values. Of living ethical values and embodying them. And I want people in my workplace to behave in those ways too. I want to create change from the ground up and I want to be able to influence change from the management level where I am. I’m realising more and more it’s about the people… I remember when I was at school there was a girl who was being bullied and I didn’t really know her but I would stick up for her… and I think that’s important, a sense of fairness and what’s OK. I don’t think I realised how strongly I feel about this. But again is that to do with ADHD, or is that my personality?

How do you resonate with the words quirky, outsider, humanitarian?

Massively.

People have called me quirky in the past. I think they mean I’m different and have a bit of an edge. Others have labelled me quirky, though I wouldn’t use that term for myself. I’m intriguing, different, I suppose.

And yes, an outsider – in terms of gender, sexuality and neurodivergence. I identify as gay and non-binary as well as having ADHD and slow cognitive processing. I also felt like an outsider growing up for various other reasons, for example that I had older parents, so I felt different for many reasons. I feel like an outsider at work too – I entered Higher Education through a different route and I am not “the norm” for my professional role. I’m a minority in terms of character and identity.

I have a humanitarian viewpoint and I bring that to discussions. I often say “You’re thinking from your own position, what about these others?”. I’m a bit of a fighter for the outliers. I just thought that’s who I was, but maybe it’s a strength of people with neurodivergence.

How does your neurodivergence affect your relationships with others?

Recently my daughter came to stay and it made me notice how bad the ADHD is, how symptomatic I am. Before that it just seemed part of daily life, but with her around more it became more noticeable. I’ve been working long hours into the evenings and sometimes early mornings, so I’m very tired and symptomatic.

We were planning a shopping trip and I was trying to plan backwards from the time we needed to leave, so I ended up planning four or five alarms to get everything done, in order to leave at the set time. We were laughing as it was quite funny, and she helped me set the alarms – even though I pressed snooze on the first one which sent all the others into chaos!

I can see how chaotic I’ve been when I’m tired and she’s around – she’s helpfully pointing out when I need to do things to be on schedule. It’s making me notice how my ADHD manifests, and how reliant I am on my alarms. It’s standing out with someone who’s incredibly organised (and only needs to set one alarm to wake up!) and I’m noticing how chronic it is at times…it’s a bit embarrassing. I need 5 alarms to get to the superstore and make sure I feed the dog! I’m a bit embarrassed by it; I think she must be thinking, “How on earth does she hold down a job?” when I can’t even get to the superstore without 5 alarms and someone else keeping me on track.

In previous relationships I don’t think I noticed it so much as they did so much of the household management, so I only had to do what I was asked to do. All I had to focus on was getting to work on time and even then I was late! Now I’m living on my own, I’m feeling it more acutely. With my ex they did the shopping, which is such a stressful thing for me! They took some of the burden and stress away.

Have you disclosed your neurodivergence at work, or with friends & family?

I recently introduced a presentation to colleagues about equality, diversity and inclusion (EDI) as part of staff development training. I had 10 minutes, which I could have used to talk about performance and statistics or university goals, but I thought no, I’m going to do something personal. I’m involved in EDI and I strongly feel it needs to be in the being of our organisation, be embodied in the culture, not just ticking boxes!

I had already talked with colleagues about my non-traditional education background and the struggles I experienced when I was a student. I was really open and others had shared their stories too. I think it really speaks to the power of storytelling. So again, I thought I would take a personal approach and I disclosed about my non-normative gender, sexuality and neurodivergent identities.

I said I’m not an expert but it gives me a lens to understand otherness and difference and motivate me to do something about that. And that’s why I’m telling you - I’m authentic and genuine because of my own differences and experience. Luckily I couldn’t see anybody as I disclosed my differences, because I’d put my notes on my screen as it was a virtual presentation!

I talked about how I have ADHD and how it’s more impactful on my life than my sexuality, for example. It’s incredibly debilitating in all areas of my life, including work, but I also have something to offer. Because I can give presentations and have conversations like this about otherness and difference, but if you don’t have people who are different “at the top” how are things ever going to change? I feel I have responsibility in the role I am in to shape the educational strategy in my workplace.

I emphasised that some things are obvious, but some things are not. This is the key thing about inclusion: don’t make assumptions – neurodiversity in particular can be very invisible, especially if you’re seen as “successful”. And there are times, of course, when it’s blatantly obvious when you’re with somebody who’s got ADHD! Like not being able to get to the shops on time!

So I outed myself with colleagues - and it really is like outing! Describing that long list of who I am, what I have, and all of the ways I am different, to about 60 people. Phew!

A colleague told me that my willingness to be human gives me greater credibility as a manager. That was quite nice to hear. Then someone else said they thought I was really brave with what I said. And then I thought about these conversations, and what I can do by being authentic and real and my genuine self – and I know I’m supposed to talk about this stuff!

How did you experience school and education?

For someone who works in Higher Education, I have a non-traditional background and got kicked out of A Levels for being gay – or as I look back now, quite probably also for my undiagnosed and unsupported SpLDs.

Actually, I think it’s good I left school as I’d probably have fucked up my A Levels! I was never very good at exams because of my memory. I aced the case studies that you got 12 hours in advance, where you apply theories to solve a problem, but if I had done A Levels I’d never have gone to university, which has been such an important part of my journey.

Reflecting now, I feel angry, embarrassed, sad and emotional, because I think now that my educational direction (not studying A Levels) is probably directly related to what I now know are my specific learning difficulties (spLDs).

When I did my PhD I’d block out whole weekends to do it but nothing would get done. I would feel I was wasting time, asking myself questions like “Why can’t I just do it?”. I would beat myself up internally and feel shame about it all. I wasn’t truthful about it or being honest with people around me because I was too embarrassed. I felt I “should” be able to do it, I felt fake and like a fraud. Even the process of writing one paragraph could be so painful - a combination of difficulty reading, retaining information and concentrating.

How does your neurodivergence affect your sense of belonging, and feeling heard, seen and understood?

That’s huge.

In terms of belonging, having the diagnosis makes a big difference but it is still painful to realise. I have no sense of belonging or sense of a tribe at work – except one other neurodivergent colleague. All the others appear to be neurotypical and I feel inadequate. Yes, no sense of belonging at work… I don’t know anybody like me or see anybody like me. I feel like an outsider, like people don’t get it… I suppose maybe that’s why I’m trying to speak about it openly, in order not to feel like that. Belonging is a big thing.

A previous partner made me feel a sense of belonging. They made me feel really accepted and, even though they didn’t have the same sort of brain, they got that I was different. My current partner doesn’t get it in the same way… well, perhaps conceptually, but they don’t understand how difficult it is or why I can’t do certain things. I don’t always get championed as being unique and with positive qualities, in the sense that I’m meant to make a difference.

I tend to find that people who are neurotypical find it hard to understand. I do feel a sense of belonging with neurodivergent people or people who believe it and have some understanding - even if they don’t have their own experience of it, they know it’s a thing and it’s hard. I have a good circle of friends and feel OK with my family. In my personal life I’ve surrounded myself with people who are different and I have quite a lot of LGBTQ+ friends who understand being “other”.

It’s mainly work where I feel a sense of not belonging. And that’s such a big part of my life. But the outsider perspective gives me motivation and passion to do something. I’m part of what seems like the 1%, or maybe less than that, at work. I don’t know any other members of staff, except one, who are neurodivergent. I don’t know of any others that say they have an SpLD. I’m the only person I know who has outwardly said they’re neurodivergent. No-one else has ever mentioned it - either they aren’t out or they don’t know.

I feel I am heard at work because of the senior role I have, and I therefore have the space to have a voice. Would I feel heard in another non-management role…? Maybe, maybe not. Thinking about past managers, I don’t think so. I feel heard because I’m in a position of influence with reach. In terms of being seen, I am making myself seen, but I’m having to do that by outing myself. No previous manager or workplace has ever noticed my neurodivergence or given any support for it.

I don’t feel understood, no. I don’t really talk to friends about my neurodivergence, except one or two, probably because of the vulnerability and stigma associated with it. People still don’t think ADHD is real – there’s such a stigma attached to it. I think slow cognitive processing might be better explained and understood. The stigma with ADHD is terrible and gets confused as a mental health issue when it’s a neurobiological issue. It gets confused with people thinking it’s how you were brought up or how your parents raised you.

I don’t feel like I’m really being me – it feels like the early days of being gay I think, that other people don’t know the real me. Their assessments, judgements and friendships are based on misinformation or false information… I don’t feel like I’m being genuine, or I’m still a bit hidden. And that’s my doing, that’s my decision.

I feel vulnerable and embarrassed with the stigma associated with it - there’s still a perception that people with ADHD are “stupid and lazy” and they just need to try harder. Maybe if I’d had my diagnosis as a kid it would be different, but it’s such a complicated thing to explain – if I said it, I’d need days, weeks, months, to have a whole conversation about it for them to really understand how it impacts everything. Whereas if you say you’re gay, people get that! Even though they don’t know your own struggles, they know what that means. I could just say I’ve been diagnosed with ADHD and it’s terrible, but they’d have no idea what it means in my life. But how do you explain that? I don’t even bother explaining it because it needs so much clarifying.

Somewhere we belong together by Quinn Dombrowski

How has being neurodivergent affected your mental health?

It has a lot to do with self esteem and embarrassment for me. ADHD gets caught up a lot in whether you’re good at something or not, whether you can function effectively or not. My mental health is not too bad, even though my neurodivergences do make me feel crap about myself. But I don’t think I let that override my life; I might feel that way briefly and then move onto something else.

I do experience some anxiety about how I’m doing at work or how others perceive me. Equally I can move into “fuck it” mode, this is me. I don’t often feel depressed, or when I do I don’t think it’s linked too much. I have small obsessions - I need to know where everything is, even if it doesn’t look too organised to other people! I suppose my mental health isn’t too bad, because I’ve been doing the work. I don’t know what it would have been like without working with a psychotherapist over the years, starting before my diagnosis.

Ironically, I don’t talk to my therapist much about my ADHD because I don’t feel she fully gets it. And I’m closed about certain things anyway, so part of it could be me. I’ve read that working with someone who is an ADHD therapist is helpful. I’d love it if my current therapist went away and read for two weeks on the subject and came back and helped me make links between my life, relationships and neurodivergence. She’s obviously supportive and a champion of me but she may not be able to help me make those connections about my life. I don’t get the impression she’s worked with many ADHD clients.

I do wonder if how I felt at school was linked to neurodivergence. Looking back, I view the steps of my life like watching a computer game: you’re running ahead and behind you there’s an explosion. Somehow I’ve always managed to stay one step ahead of being blown up. Somehow I didn’t fail my A Levels because I’d already left and moved on. I feel like I’ve often moved on in jobs, for example, before something explodes. It might not be true but it makes me feel crap, because I often feel as if I’m moving from what seems like one disaster to the next, though from the outside people may think I’m successful because I’ve achieved so much in different positions. But I don’t feel that people’s perceptions of me are based on the real me.

I feel inadequate that I can’t even go shopping or get out of the house on time, and that made me feel sad again that I can’t do things like everybody else. I don’t know what is normal; I sometimes have no sense of the ‘right’ reaction to a personal situation. Sometimes I get oversensitive and I can get angry and have emotional outbursts, and I know that is common in ADHD. I can feel rejected easily and misunderstood – and I feel shit when I get oversensitive. And I don’t know if this is mixed up with gendered notions of emotion but I don’t feel comfortable in myself being so emotional. This is a big point of intersectionality for me. I feel tension and conflict within myself about expressions of emotion.

How do you support your own wellbeing?

I’ve got my therapist. I probably feel the happiest I’ve ever felt (even with work stress), lighter and more content, and a lot of that is due to having regular therapy. I have a much healthier life now than I used to.

Seeing people socially is really good for me – friends, family and connections. They stop me going down the rabbit warren! And, to be honest, my dog! If it wasn’t for her I don’t know what I’d do really… she makes me go for walks, she makes me laugh every day and she forces a routine and regularity that is so hard to do on my own. In the mornings, I have to let her out, feed her and then I put the kettle on to start the day. It’s important for me not to be on my own, and I’m not on my own because I’ve got my dog.

What helps you bridge the gap between yourself and people who are more neurotypical?

At work, I bridge the gap by talking about it and bringing it into conversations and meetings. In meetings we’ll talk about something and I ask people to remember certain things, because I can’t remember everything and my short-term memory isn’t very reliable. I say to a colleague, “Will you remember this? Because I know I won’t.” I’ve told those people I work with that I have ADHD so they can understand.

Outside of work, I’m not sure. I don’t notice a gap too much, apart from people taking the piss out of me being late. I figure that I must be OK for people to keep me around. I think that having me as a friend may not be the most fulfilling friendship – I’m often late, I don’t respond regularly, I could be perceived as quite passive, but there’s a reason for that, much of which is ADHD. I must bring something to the relationship because people are still in contact with me!

What do you want people to know about your neurodivergence?

I want people to know things like I’m not late because I don’t prioritise you or because I’m being arrogant and think my time’s more important than yours. I’m late because I really can’t get there on time! And it explains why I’m behind on things at work or if I don’t reply to emails - not because I’m crap but because I have ADHD. I think I can hide it more in my personal life, so friends won’t see it as much possibly.

It’s debilitating, I want people to know that. It could be because I’m in the early stages post-diagnosis, but I want people to know it’s fucking horrendous. Why do I want people to know how hard it is? I think people think I’m a bit crap, but I’m still working 3 times as hard to get to that pretty crap point! I suppose it’s being understood – systems are set up for a neurotypical world and not for how I work! I need to communicate just how hard I’m working and that trying harder isn’t the solution – I have ADHD and other SpLDs and simply work differently.

What do you think you contribute to the world with your neurodivergence?

For me, much of it is connected to my work. I talk about it and raise awareness of difference, which will hopefully help others. I think we have a lot of empathy as neurodivergent people, we can feel how it feels for others, and I’ve always been like that and that’s a strength. We also have emotional sensitivity and through passion we can fuel the change in people’s understanding and awareness of how other people may function differently.

If you’d like support to navigate your neurodivergence contact bryony@creativesoultherapies.com

For more information on ADHD please visit additudemag.com

For a good source of information on neurodiversity see understood.org

Neurodivergent: Real Stories #1