Neurodivergent: Real Stories #7
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 that the following interview contains swearing and conversation about self-harm and drug taking.
Interview #7
Salesperson in mid-20s, received diagnosis of epilepsy in early 20s
How do you define your neurodivergence?
It was a few years ago when I first got my diagnosis for epilepsy. When I was about 9 years old, I had this full-blown seizure and the guys at the hospital thought it was meningitis – obviously, it turns out, it wasn’t. From then until my early 20s, I was having these pulsing sensations in my eyesight that we all just disregarded. My family and I didn’t think anything of it and it was happening multiple times a day. At the age of 21, when I had another full-blown seizure, the neurologist asked me if I had been having pulsing sensations behind my eyes, and I said, “Yes, I’ve had them for years, multiple times a day.” The neurologist said that each of those times was a partial seizure. They told me I had been fitting all the time but was oblivious to it. I couldn’t believe it. It’s amazing it happened so many times and nothing serious happened between the ages of 9 and 21 - that’s like 12 years of seizures! The diagnosis was questioned last year by my mental health care coordinator because she suggested it might not be epilepsy, it might be NEAD (non-epileptic attack disorder) instead. Since then, I’ve been going back and forth to the hospital. I’ve had tests to see if I’m photosensitive, which I’m not. I’ve had all these questions and statements thrown at me, and it’s still under investigation, but at the moment I’m pretty confident that it is epilepsy, because everything in the past matches up to that.
When I had the seizure in my early twenties, I was out of it and I had no idea what was going on. I woke up to two paramedics standing over me and I apologised, saying I must have fallen asleep on the floor. And that’s when they explained that it was an epileptic seizure. During a full-blown seizure, it’s like your brain is being totally scrambled. I’ve got no control over my body, I’ve got no control over anything really. One of the triggers for the biggest seizures I have is reading. If I’m reading to myself and not out loud, it’s perfectly fine. But if I have a book and I have to read to anyone else then straight away my eye starts pulsing and that’s a partial seizure. I tell people and they think, “Oh, you can’t read then,” but it’s not that. It’s physically reading something out loud to somebody else. I know that for myself because it’s happened every time I’ve read a book to someone else. It’s strange because, when I read, I am physically stopped from talking. It’s like someone has put a block in my throat that I physically can’t get out and I can’t talk until the seizure has finished.
In terms of my brain, it works very, very differently to everyone else’s. One of the main issues I’ve had, and have, is a phobia of people making judgements about me. Last year, I started Cognitive Analytic Therapy (CAT) to help deal with social anxiety. It’s still there and it’s still an issue but the anxiety is a lot easier to control than it was a couple of years ago. There’s still the odd occasion where I go out and If someone looks me straight in the eye it’s like someone has switched on something at the back of my brain. I start questioning, “Why is he looking at me in that way? Why would he be looking at me and nobody else?” It sounds silly but it’s something I’ve had since I was a child, something that’s always been there.
I am someone who really struggles with emotions, that’s one of my main things. I had a history of constantly self-harming and overdosing on whatever I could find. There was one particular night when I’d overdosed on epilepsy medication and my Mum came upstairs and asked if I had taken all of the tablets. I was so out of it, I said yes and she called 111. The ambulance came out and the paramedics referred me onto the NHS for mental health treatment, so that’s where it all began. I’m now having CAT to help deal with the past and learn how to manage today, because I struggle to deal with day to day with stuff that’s happened in the past. I know it’s in the past, I know I should leave it there, but anything bad that happens always relates back to the past. The point of therapy is to put it to bed, put it to sleep, push it away. It’s a bit of a mess to be honest, that’s the only way I can describe it.
The way I see my brain is like this: imagine you have a perfect pink brain, and then imagine you’ve got a green slime on the top of it, like a patch, and it’s just sitting there. The brain is buzzing, going around, sending electrical signals etc. but the slime prevents your brain from operating to its full capacity. That slimy stuff is my mental health problems. The epilepsy is in there somewhere but I’m not worried about that. The slime has a texture like jam but is stretchier, like melted cheese that creates that long string. If you get it on your fingers it gets stuck and you can’t get it off you. Like chewing gum on your shoe, you can’t get rid of it completely. My mental health is always going to be there, but I’m trying to make it work better with that shit there.
I see my epilepsy and mental health as two completely different things. I know one of the triggers for the seizures is stress, but everyone suffers from stress, it’s just a part of life. In terms of the epilepsy and mental health, they’re two different things. It’s like one half of my brain is epilepsy and one half is the mental health.
Gum Shoe by mahalie stackpole
How did you experience finding out about your neurodivergence?
It was a relief more than anything, because I had always wondered what these little pulsing sensations were. As soon as the bloke said to me, “I think you have epilepsy,” and once he’d done all the tests at the hospital, it was clear. As soon as I got that official diagnosis letter, I thought, “Ah, that’s what it is.” I thought to myself, “Now I can get on the right medication, we can manage it and we know what it is. Whenever I apply for a job I can say what the actual disability is.” And I was happy to get the free bus travel, so that was a bonus! I remember the neurologist saying you get discount on train fares, you get free bus travel. There are some benefits!
In Divergent Mind, Jenara Nerenberg makes the case that all neurodivergence is linked by sensitivity. How would you describe yourself in terms of sensitivity?
Quite frankly, I’m one of the most sensitive people you will ever meet in your life. I don’t know how I can answer the question… it’s a question that definitely relates to me but I can’t think of the words I would use. I take everything to heart. I know I shouldn’t – it’s another problem to add to the growing list!
In therapy, we’re learning about rejection and how I experience it. To give you an example, if my brother asked my Mum for a lift somewhere and she says no, my brother will shrug and go back upstairs. Whereas if I ask my Mum the same thing and she says no, it literally feels like someone has broken my heart. I will try not to get upset, but it completely flattens the day. If I’m in a really good mood and that were to happen, I would just go upstairs and drown in my sorrows. Rejection is a very tricky one, it’s a really difficult one.
To give you another example, if I was sat waiting for the bus and a group of people came and sat next to me who were talking really loudly and then suddenly start talking really, really quietly, then that’s a switch point for me. All of a sudden, I am thinking, “Why has it gone so quiet? Could they potentially be talking about me?” I ask myself, “Am I dressed OK? Do I smell OK? Do I look OK?” It’s triggered so, so easily.
Padlocked (1) by Ron Gilbert
What do you find most challenging about your neurodivergence?
Regarding my mental health, I think the most challenging thing is to actually accept that someone can be there to help me feel better, because that’s something I’ve not had a lot of, especially in my childhood. Therefore, it’s the most challenging thing to open up, to allow someone to come in, help me and give me advice. Usually, I’m a very, very closed person. It’s like I’m locked with padlocks and chains; I don’t open up to anybody. So, the most challenging part is to trust people. Even to go to a GP, for example, to go and say I have problem has been a challenge. To say that I have a mental health problem and it needs addressing, it’s situations like that I find the most challenging.
With regards to epilepsy, the most challenging thing I find is remembering to take my medications every day! It’s terrible, especially after work when I want to have a sleep and then I forget to take my tablets. I’ve got a pill pot – I didn’t want one because I thought it was just for old people. I finished work one day, came downstairs and my Mum had an Amazon box on the table. She said, “Open it, I’ve got a present for you!” It was this rainbow pill box that had the days of the week on. I was like, “Are you actually joking me?!” I don’t even use it, I just remember to take my tablets when I can. Someone in their twenties doesn’t have a pill box!
What do you consider to be the strengths and gifts of your neurodivergence?
When it comes to mental health, it’s having had the strength to go to people and say I have a problem I need help with. No matter how bad my mental health is, there have been people who are willing to sit there and help me.
I’ve spoken to so many people with mental health problems and they hide away, they don’t want to talk about it. I encourage them to seek help. It’s a great feeling when I’ve told someone my story, that I went to the GP, it was really embarrassing and I absolutely hated it, but a year on from that I’ve had two different therapies, I’m on the right medication and things are slotting into place. In a previous relationship, my partner had their own mental health troubles and they absolutely would not go to the GP or NHS at all. Their idea was to sniff or swallow any hard drug they could find. After that relationship ended, I decided I would go to the GP, say I have a problem and get myself fixed or repaired. And that’s exactly what I did. I thought to myself, “Actually I proved them [my ex] wrong, it’s helped immensely”.
In any scenario, I will always use my creative brain. I don’t know why but I always see things from a picture perspective. I will always draw pictures of how I see things - in any scenario my creative brain comes out, it comes out more than anything, I would say. In therapy, we were talking about self-harming and my therapist asked me to picture it. I drew a bag full of blood, which represents the emotional and mental pain, and when I self-harmed it was represented with an incision in the bag so the blood drained out. The bag was empty and all that emotional pain was gone. That’s probably a good example of how my brain works; I see everything from a creative perspective.
In terms of the epilepsy, it’s realising that having a disability isn’t always a bad thing. As bad as it might seem, I’m just happy with free travel because epilepsy is classed as a disability. I can get a disabled bus pass and use any bus in England.
How do you resonate with the words quirky, outsider, humanitarian?
I’d probably say quirky, because I don’t always see my mental health problems as a bad thing. Sometimes I see it as: “He’s quirky because he’s got his own instabilities”. I see myself as quirky because I’m not quite the same as everyone else, you know. Everyone else has these set routines for the day whereas, for me, if I have a funny turn of mental health, then the day turns. I try and make a joke or I try and make a good thing out of everything really and that’s how I see myself as being quirky when it comes to mental health.
Outsider, I could not agree more with that. I’m not one to be out drinking and things. I don’t drink, I don’t smoke, I don’t rave. I’m quite mature for my age. I’ve always considered myself a bit of an outsider, particularly in work places. Other colleagues might be doing drugs on the weekends, but I always refused. I’ve always been called the outsider or the “boring one” because I didn’t do what they did, basically. I like to look after myself – when I’m not overdosing or self-harming. Generally, I really like to look after myself.
Humanitarian… I don’t think I could do that kind of work, if I’m totally honest.
Curly Purple (Pressure) by Stig Nygaard
How does your neurodivergence affect your relationships with others?
Immensely.
For example, say I was chatting to someone that I was seeing and I received a message from them that sounded a bit blunt or off, then straight away it’s a trigger. I think, “Why are they being like this? Maybe it’s something I said.” When I ask them if it’s something I said, it will kick off a stupid argument and it puts a lot of strain on the relationship. I always said that if I was to pursue a romantic relationship with someone, it would have to be someone who has experience of mental health either in a professional environment or someone who has been there. Because then I could relate to them on that level. At the moment I’m not bothering with all of it, I want to enjoy my job, move home and get some stability before I put myself back out there again.
The epilepsy doesn’t have much impact on my relationships. I just tell people I have epilepsy and if they know what to do when someone has a seizure, then that’s good. If not, then I’ll explain what to do to them. It’s never ever been an issue in a relationship before.
What helps you bridge the gap between yourself and people who may be more neurotypical?
Hmm, the gap between myself and someone who’s got what’s called a “normal” brain…
Personally, I don’t see it as a gap. I see it as more like the size of a field. That’s the kind of gap I would see it as, because I’ve experienced that people with these so-called “normal” minds seem to think that people with mental health difficulties don’t have it as bad as they make out. If only they could experience the mindset of my brain… honestly, they have no idea whatsoever. Every single time I see my granddad, who has never had any mental health troubles in his life, he speaks to me like it’s just a little, teeny, tiny issue that can be brushed aside. Something you can just get rid of it and it’ll be fine. The last time I saw him, his wife was asking me about my mental health and at the end of it he turned around and said, “You’ll get over it at some point.” So, for me, the gap between my brain - whatever brain this is! - and a so-called “normal” brain, as we’ll call it, is immense. We’re not talking about a 2-foot gap here, we’re talking about a 200-foot gap.
To help bridge the gap, I think it’s people actually wanting to sit down and listen to me. It’s people who give me that reassurance, who invite me to sit down and explain to them how it all works. It’s people who say, “Why don’t you explain to me what goes through your head on a day-to day basis?” - that bridges the gap slightly. Until someone actually goes to that horrendous place where people with poor mental health go, unless they go there themselves, then I don’t think they’ll truly get how someone with mental ill health goes through life on a daily basis.
Have you disclosed your neurodivergence at work, or with friends & family?
There are a couple of family members that I speak to about my mental health, particularly one of my family members who had anorexia for several years. She’s gone and got therapy, she’s gone and got the help she needed. She kept telling herself there was nothing wrong, when she was starving herself and not eating for days at a time. She thought that was normal. She’s gone and got the help she needed, and she’s pretty much all better now. In terms of my other family members, I don’t really talk to them about it because they don’t get it. They can say they do, but, honestly, they don’t, they have no idea.
In terms of work, I pre-warned my boss about all of this. I told them about my weekly therapy and they let me go. Shortly after I started at my job, we had a 3-hour one-to-one session. In it, I told them about everything and why I have therapy, and afterwards even my boss’ boss said if I ever need to talk then just drop them an email. My boss always has time for all of us, which is reassuring actually. Work colleagues tend to know more about my mental health than my family do, which is really weird but that’s how it is.
Football Field by Gastón Gaiduk
How did you experience school and education?
I’ve not got a single good word to say about school, if I’m totally honest.
At my first school, when I was about 3 years old, I used to attention seek a lot, I used to get into trouble and I used to be quite rude towards the teachers. Then, when I went to a new school, the tables turned and it was back on me. I had a speech problem when I was young: I used to stumble on my words and struggle to speak. I had a lot of speech therapy to fix that and luckily it was fixed and I grew out of it.
The only good part of education that I liked was college. But in primary school and secondary school it wasn’t nice. I was attacked several times and I was bullied every single year that I was at both schools, come to think of it. All because I was born with a jaw deformity, my bottom jaw had an under-bite, and people just saw that as an easy target. There was one time, when I was about 11 years old, I was attacked in school and someone had actually kicked me in the side of the jaw, which made it worse. In my teen years it got progressively worse. When I was in my 20s, I had surgery to fix my jaw and have everything put back right. School was not a nice time for me and I’m glad I’m not in education any more. I hated it.
How has being neurodivergent affected your mental health?
I’ve always suffered with depression and anxiety all my life, and it’s got progressively worse since I’ve had these mental health troubles. Depression and anxiety has always been an issue, always, ever since I was a child. When I was younger, I remember speaking to my Mum about it and saying, “Something doesn’t feel right up here. I’m feeling like this and feeling like that.” She just completely disregarded it, said it was just a phase and I would grow out of it. I knew instinctively that that wasn’t the case, I knew I would have difficulties when I became an adult… and look where I am now. Depression and anxiety have always been a piece of me, like a permanent piece of the brain puzzle.
I’ve got quite a creative mind. The way I see it is there’s the epilepsy, the mental health, the self-harming and the overdosing, but it all starts with the mental health, and once that’s triggered it just grows and grows and grows until it gets to a really bad stage. If I’m depressed or anxious because of my mental health, that’s when I probably start stressing about things I don’t need to stress about. That is when the bar for triggers starts to rise. My mental health problems are more likely to impact the epilepsy than the other way around.
However, the time I had the full-blown seizure in my 20s, I wasn’t stressed. I was helping my ex-partner and was reading from my phone, then the next thing I remember is waking up in the next room on the floor completely passed out.
How does your neurodivergence affect your sense of belonging, and feeling heard, seen and understood?
I think I had a really big lack of belonging pretty much all of my life, until last year when I was in a therapy group. I was sat in this room full of people having exactly the same mental health troubles as me. In the therapy group, we would think about each other’s problems and how we could help each other. I was the only one who got upset at the last session, because I loved those sessions. We stay in contact, we still meet up and go for walks, we do that every now and again. In terms of feeling included or being part of something, it’s not really something I’ve had a lot of these past few years. Hmm, I say these past few years but it’s been like forever. With everything that was going on at school, as well as not feeling very close to my siblings when I was younger, a feeling of belonging is not something I’ve had a lot of.
Feeling heard is probably something I’ve also had a bit of a lack of. I don’t think anyone really gets how mental health difficulties are, as I’ve mentioned. I’ve had people say, “You’ll be fine, you’ll get over it.” or, “Get over it. Take one of these and you’ll be fine.” Especially with my parents, who say they understand but deep down they don’t. So, it’s not often I feel my voice or my opinion is heard, it’s very rare. I’m kind of used to it; I’ve adapted to it from school time.
Feeling understood… you know, I probably get a little bit more of that, to be honest. If I feel sad or something, I can say to my Mum that I’m feeling a certain way and she’ll come over and give me a hug. And I feel like that’s understood - she listened to me and helps me feel better.
In terms of being seen, I have felt quite unseen in workplaces because I’m not doing what everyone else does in the group. I’m all down for people taking the mick out of my epilepsy but at one workplace, after I had the major seizure, the teasing went on for a year and half. By the time I left I’d had enough of it. My current role now is the best I’ve had so far, because I don’t have to see people day to day. It’s also because it’s fixed hours, so I can plan things. I can say, “I’m free after this time, I’m free at weekends, I’m free in the evenings…” and it’s nice to have that sort of structure. It’s nice to just come in, know what I’m doing, know what time I start, know what time I finish. Plus, the management are really there for us, they really listen to us, they really support us, and it’s only a small team so it’s nice.
Ask for help by Ellen Thompson
How do you support your own wellbeing?
That’s a tricky one.
When I’m by myself in the entire house, I’ll try and get out regularly. I’ll try and get a brisk walk in, or see my friend up the road, or take the dog out because that’s quite therapeutic. At the moment, after work, I tend to come off the laptop, FaceTime someone and tell them about my day, or get the bus to the city and see my friends up there. I learned all these types of skills from the therapy group. Sometimes, I’ll meet the group members - we’ll go for a walk and it’s quite nice.
It's better when I’m distracted. Particularly when I’m working, then I’m not always looking at my phone because I’ve got things to concentrate on. Work takes my mind off everything. If I could work for longer hours, then I would because I wouldn’t have to worry about having a mental breakdown or something.
What would you like people to know about your neurodivergence?
I’d probably say that if there was ever a time that you didn’t feel quite right or as you usually do, and if it’s something that is happening frequently or on a day-to-day basis, then go and get it looked at. Just go and speak to a professional about it. Don’t let it get worse, don’t let it simmer and simmer and simmer until it is out of control. I think that’s what I did. I wish when I was a teenager that I’d gone to a GP and said, “I’ve got these issues” because then I wouldn’t be sat here now in my twenties still having therapy.
What do you contribute to the world with your neurodivergence?
I don’t know if you’d call it a contribution, but I feel like I’ve helped a few people to have the courage to go to a GP and say something isn’t working in their brain, it needs looking at. I’ve had a couple of people say to me that they really appreciated me talking to them. After we talk they say they are going to book an appointment with their GP. And I chase them up and I just keep going at it until they go to that GP appointment. And then they tell me they’re on a new tablet or have been referred for some therapy sessions. I don’t know if that’s a contribution, but that’s how I’d put it.
If you’d like support to navigate your neurodivergence contact bryony@creativesoultherapies.com
For support with epilepsy in the UK see Epilepsy Action
For a good source of information on neurodiversity see understood.org