Neurodivergent: Real Stories #5
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.
Interview #5
Music professional, received misdiagnosis of bipolar disorder aged 18 and accurate self-diagnosis of ADHD in late 20s
How do you define your neurodivergence?
Discovering I have ADHD has happened in the last 2 years, because prior to that I did not understand what was going on.
I was misdiagnosed as being manic-depressant bipolar when I was younger and living in America, where I grew up. I think I was 18 when I received that diagnosis and I was on medication for about 7 years. I decided to come off of it, because I wanted to live a more natural approach and I’m very self-aware of what’s going on. It was agreed with my doctor at the time, because I was also planning to move to the UK, and it was like “OK, I can do this”. After about 4 or 5 years of living here in the UK I went to a GP and they told me, “You’re not manic-depressant. You wouldn’t have this life if you were. You wouldn’t have had almost 5 years with no episodes if you were. Let’s try something else…”
Since speaking with other people, it makes more sense that it is ADHD. A lot of the time, especially in women, it goes misdiagnosed in the teen years as being bipolar or manic-depressant. Once I’ve read up on that, it makes a lot more sense. My “episodes” happen because of sensory overload, when I’m overwhelmed because my mind can’t stop thinking of these lists of things. I can’t jump out of this way of being. It’s not like [with bipolar] the world is horrible, then the world is great, then the world is horrible. With my brain and ADHD it’s like constantly making plans, like building towers.
One of the first things that showed up really early for me were these chain thoughts that never stop… one thought leads to another thing, to another thing, to another thing. When I was younger, I was writing a school paper about Coca Cola - we had to do our favourite sweet thing, so I chose Coca Cola. I was writing this paper and I got totally side-tracked on the processing of the sugarcane, so I ended up writing about the butterflies in the jungle. Even my teacher was like, “No, no, come back, come back, we need to stay down this pathway.” Butterflies in the jungle was such a small part of the whole topic but I just go there!
I used to have insomnia when I was younger, because again these thoughts would just race constantly. So, I haven’t ever really had a way to disconnect. I find there are certain activities, “escapes”, which help me to relax my mind and not focus so much. For me, they are music, skating, singing and horseback riding, too, when I was younger.
I’ve always had problems getting on with people. I don’t really fit into most normal social groups because certain aspects of them I just can’t keep up with, like group chats. The notification alerts, they’re just too much. I can’t keep up with so much social media and messaging - trying to keep up with this one, and this one, and this one. As a result of social media, the modern world has gone haywire for me and it weighs down on me in a way.
Another great example is my house and general chores or daily tasks. Everyday tasks and chores for people with ADHD are usually really hard. We make lists - we’re usually really great at lists! - but checking those off is hard, because it’s like, “Where does it start, where does it go?” I start to do some of those things but then I remember, “Shit, I need to answer all these emails for this project”. But then I let my life go because I’m so hyper-focused on making sure all these other projects happen. And these projects end up only being able to happen at about 40-60% capacity, which is a shame because it’s gotten worse in my adult life, as a result of not recognising these behaviours for so long. Unfortunately, the people around me, like my family who were around me during the misdiagnosis of bipolar, they see these times as bipolar episodes or spouts of depression when they are simply symptoms of ADHD. My Mom might say, ”Maybe you need to go talk to somebody and then you’ll be able to clean your house.” Whereas the reality is that I’m thinking, “Actually, I just need some help with some emails and then it will be done!”
For me, another thing with the sensory overload has been with the miscommunications because I really try to explain to people what is happening in my life, like what is my reality of the situation. And they sort of see it as me trying to tell them how things are for all of us, and I’m like, “No, no, I’m just trying to tell you that this is what’s going on in me. This is why you might be getting a cold reaction or what seems to be anger.” It’s really just fear and feeling overwhelmed that manifests itself in me as quite fiery. It does become volatile and that’s when the most aggressive parts of me come out. I guess you would technically call it self-harm because I have left bruises and marks on myself. But it is just this manifestation of needing to get something out. I’m too conscientious, I don’t want to hurt or break anything else. So, I think, “I’ve got strong enough legs” and I’ll sit and punch my leg or bite my leg or something like that. And it’s just to show it’s too much, it’s just too much. It’s my way of saying, “Stop for a minute, I need to unplug.”
My brain is very much reward- and achievement-based. It might have been just a mix of things I’ve done in my life, because everything’s been so performance-based, so therefore it’s been an achievement-based world. Every morning it’s like I’m looking for the highest reward to do for the day, and I’m thinking about what is the easiest to achieve and what has the least amount of steps that I have to go through to get there. At the moment, because of all the sensory overload that I get on a day-to-day basis, I feel like I only have the capacity to do so many things. When I say I’ll do things, I really have to over-plan, again there’s a ton of steps. I actually see that in itself as a reward. I love that series of events that can happen and that planning. Sometimes they stress me out but I think this is the difference between bipolar and ADHD, too. Right now, my life situation isn’t working for me but I’ve been able to recently manifest these things that I’ve been really hoping for, which is life in a more secluded place where I don’t have to hear and see so many things that immediately put me into overload. Waking up in the morning to cars, trucks and poles banging because they’re setting up for the market, and the bin men between 5-7am, it is too much sensory overload. At the moment, I am outdoors and I can hear the wind and the rain. The thought of waking up to that feels better, which is why I have these forward-thinking plans. As soon as I can get some of that sensory overload out of the way, honestly, I can see a lot further, it’s clearing out that haze that’s there.
Paper chains by Paul Miller
How did you experience finding out about your neurodivergence?
It was a really weird process actually, starting with the misdiagnosis when I was younger. I always fought it and it’s always been a touchy thing for me. I would tell people about it but I was always very triggered if they would ask.
I had rough, angst-y teen years as we all do. I went on an exchange for a year and when I came back things just got really shitty in my town. My peers made my life hell when I was gone and when I came back. It was really terrible high school shit, like starting terrible rumours, really stupid shit, and so I started acting out. I ended up getting arrested for shoplifting, which is very unlike me, and my Mom was like, “What the fuck is going on? You’re acting out. We need to change this, so you need to see a doctor.” Thankfully I did and that’s where this [mis]diagnosis came out.
I was put on a medication usually used for schizophrenia and epilepsy but I found a really nice dose which didn’t make me feel numb to anything. The purpose of the medication was to trim the edges off the extremes and I do feel it did that, it did help me focus. But I had also begun university in that time and, again, it was a really touchy subject. Everyone would look at me and every, every, emotional response was met with, “Have you taken your medication today?” “Have you been taking your medication?” “Are you OK?” And I was like, “I am OK! What the fuck… I’m fine. Stop walking on eggshells around me all the time. I’m allowed to be sad, I’m allowed to be really happy about something. It doesn’t mean that it’s an episode.” I still find that even now; I was literally saying those things to my Mom last week during an argument.
The biggest reason why I decided to get off the medication is because in America I had to go through health insurance. There was one month without having health insurance and we had to pay an exorbitant amount of money to get my medication for that month. At that time, without insurance, it cost almost $1000 for one month’s supply. I didn’t want to have that dependency and I also wasn’t actually sure that this was the right thing for me, because it’s very questionable how much pharmaceutical influence there is in the medical field in America. So, I wanted to see if I could do this on my own. I spoke to my doctor and we were able to taper me down off my medication. He said that as long as I continued to be self-aware, to monitor myself and to get help when I needed to, he thought I would be fine.
For a couple of years after moving to the UK I was fine. However, I didn’t get to make my own life here. I was put into a life in the UK that would be pretty good but it quite quickly became way too much for me and I got in way over my head. Strangely enough, I made a post on my Facebook and a woman I went to university with decided to pick up on it. She said, “I have ADHD and it was misdiagnosed as bipolar. I think that you have very similar traits to this, but I don’t want to step on any toes…” And I was like, “Oh my God, no, please tell me more!” so she introduced me to a couple of relevant social media groups. I trusted her suggestions because she knows it’s this worldwide community of people like us. As soon as I started reading I felt immediately like, “Oh my God, I get it, I totally get this. That is me to a T.” I really resonated with some of the posts, especially about tasks and lists, sensory overloads, crowds, people and interactions with other humans. I thought, “Wow, for once I can absolutely resonate with ALL of this, rather than what was being told to me about how I was supposed to be feeling these things about being bipolar and manic-depressant.”
Especially when I was younger and in my early 20s, I would almost use some of the symptoms of bipolar as a scapegoat for me not really feeling the things I needed to feel or getting the support I needed. When I look back on it now, it was overwhelming moments of too many things happening at once and not having the support and help to handle them, which made me question myself, “Oh, God, can I do this?”. It was just being overwhelmed; it wasn’t simply feeling sad. I can definitely feel the difference now, which is good in my life moving forward. Before, I was really confused.
In Divergent Mind, Jenara Nerenberg makes the case that all neurodivergence is linked by sensitivity. How would you describe yourself in terms of sensitivity?
I’ve always been really sensitive - overly sensitive - even to the touch. I have skin sensory sensitivities, so I wear comfortable clothes. I was happy for lockdown because I wear a lot of yoga pants anyway. I’ve never really liked denim, I don’t like the feel of seams. I have to sleep on crisp sheets, because I’ll wake up if I feel a wrinkle. These sort of things hurt my skin. I do feel like a cat with whiskers, because they can feel the force coming onto them before it even touches them, and that’s how I feel when I’m in crowds or with people. Even with their sound, because my ears are very sensitive. As soon as there is something that is abrasive anywhere, my mind is building this force field and my body is building this force field around me to say, “Fuck off!”
Emotionally I go very, very deep. It’s a very passionate way of feeling about everything. It manifests itself as me needing to help everyone, to be that voice for people who don’t have one. Everything seems louder in all of my senses. The cries are more extreme, the laughs are more extreme. It’s intense both for myself and for the people around me, because I do see the effect I have on other people, especially the more extremes. Obviously, if I’m having a really good time and feeling great, everyone’s like, “This person’s great, we’re having a really great time!”. I can also manifest these really intense emotional responses through my music and when I sing my songs. In music that’s a lot easier to do. But there are also times when I’m quite abrasive with myself, trying to shield myself, and saying things like “What the fuck” if I’m getting overwhelmed. For example, in the shops the person next to me can hear that, even if the person it’s directed at can’t hear it.
So, I am very passionate and all of it manifests because I’m at an overload - my sensory awareness is tender, I would say. I think it’s also due to the personal growth that’s been happening recently, because I feel like I’ve gone through a rebirth and I have this new skin. And it does hurt, this new skin, but I don’t want to have that big shell around me anymore, because I can’t really receive when I’m that way and it’s important to me to be able to receive. I really love that, the receiving of people’s emotions and understanding them, and I want to know their process in life as well. Teaching music has been that for me: these moments for me to connect with somebody to just say, “Show me what your soul does and I’ll show you what mine does, and I think we can communicate that way.”
passion by CLAUDIA DEA
What do you find most challenging about your neurodivergence?
Focus.
Yeah, focus, because I can see how everything can connect to everything. Even when I’m listening to people, I’m thinking this way. I’m the kind of person that you tell me a story and I’ll share a story of my own to show I can relate to it. My friends know that about me, they know I’m trying to add to the experience and I’m not trying to steal the light. Unfortunately, I’ve had a lot of those reactions from people who accuse me of trying to steal the light. Actually, it’s how my brain is connecting to your story and focusing here.
That’s why I’ve lived a more solitary life, because I am my own responsibility and I don’t have a boss. Again, because of the demand for that level of focus. When I did have an office job, my boss would tell me I have all these emails to get through and ask me to do something by the end of the day, but my brain would be focused on a certain task at that moment and I wanted to do that! I would have sticky notes everywhere.
My aim now is to cut down on some of those sensory overloads so I can divert more focus into things. I do need more structure in my life but it’s structure through slight routine because I don’t do well in routine. And I do need more support. I’ve found the right kind of people now who check in and notice if I haven’t eaten a full meal or if the dishes need doing or if I just need to go outside. They help gently focus and direct me. When those things happen I can focus better because I think, “I’ve got two hours left of the day, I can do this” instead of sitting on the couch worrying about all those tasks and not doing anything about them.
What do you consider to be the strengths and gifts of your neurodivergence?
I do like that my mind goes to these different places, especially with the people that I can engage in good conversations with, it just goes places. Actually, the people I’ve made my deeper connections with say, “I love where your brain goes” and we effortlessly can find that focus.
I’ve just lost my train of thought… what were we talking about again?
Oh yeah, strengths and gifts. It’s helped me to dive in a bit deeper into things. The sensitivity I feel has allowed me to make quite accurate assessments of people before I let them in to my life. Sometimes I just know that I’m going to be appropriate and respectful with this particular person but they don’t need to know everything about me.
I’ve also found that by embracing the things about me that are deeper, it’s actually highlighted and showcased me in the way that I always wanted without me realising it. I can now highlight the things I was afraid to be seen and known for, like being passionate and full of life, kind of extreme but gets shit done! I have this sense of purpose and forward way of thinking now in the world, and that’s because I’ve been able to embrace those things about me. Back where I grew up I felt it as a prejudice, because I didn’t know how I was different from my peers. I didn’t realise it was the neurodiversity that set me aside from them. Now, it makes me resent them a lot less, because I know our brains simply don’t work the same! I think being neurodivergent is more fun – this is where art comes from, this is where the most beautiful things in life come from. And just because I might have to feel some things a little deeper, that’s great… I’d rather feel all of them a little deeper than feel any of them very shallow. I think people can see that and it scares some people away. In my adult years, I’ve realised it scares off the right people! Like, alright, this isn’t for you!
How do you resonate with the words quirky, outsider, humanitarian?
All of those, in some way or another, or synonyms of those words, have been described to me as myself. And I self-describe as those in similar ways.
I’ve always been seen as an outsider, I’ve always been seen as the different kind of outsider. Because I’m the kid that would want to wear my ballet outfit to the mall. When I was in daycare, they called me “Miss America”, because even at 3 years old they could see I had that, “Hello everyone, I’m here!” attitude!
Humanitarian: I’ve always been like that. Hugely into community service and activism. I started litter groups and save the world groups at my school and university. I was just trying to make the world a better place, because I do care deeply about this place we live on. I definitely feel connected to the land. Growing up around Native American culture and seeing it so closely was educational. It’s such a good way to be and I think we all need to be connected back to these roots. That’s why I fucking hate social media now, with so many cars and gadgets and all of these unnatural sounds everywhere.
I’ve always been quirky! I would say strange or weird, definitely an oddball. It’s everything about me… when you see me in the street I’ve usually got roller skates on my shoulder. Outwardly, I’m very much quirky in physical appearance but also in conversation as well - I catch people off guard! I’m usually telling jokes a little brash, I’m out there. When I was about 10 or 12 years old, I realised I was wearing the same things as all of my friends to try and fit in and yet I still looked so different. I thought, “I’m just gonna wear things I like, because their taste is shit!” I’m a very different person, you can just tell, I stand out.
Standing Out At The Fair by Samuel S
How does your neurodivergence affect your relationships with others?
A lot of them have failed.
My male relationships have absolutely failed, they did not get how to communicate with me. In my last relationship, I was able to understand a little bit more about the communication process through reading some books. I read Men Are From Mars, Women Are From Venus and it was super insightful. I know it’s cheesy! In it they use this fictional world and the storyline makes it a little bit cheesy but you see how these common communication situations normally go with men and women.
My female relationships have lasted so much longer, because they’ve been able to see those things and communicate with me in the way I need. They know I don’t need them to solve my problem, I just need to get it out, so they simply offer their support. Generally, I avoided females in my life because I didn’t connect with them but now that I’m older I have a much stronger connection with my partner and friends, my strong female friends, who do see me.
The more open I’ve been about having ADHD, the more in the know I’ve been about it, the more genuine the people have been in my life. They’ve weeded themselves out, some painfully and some not. Some have just moved on, we’ve lost communication, and that’s OK because it’s allowed me the capacity to be more open with people. The more open I am in safe environments, the more I can explore this, the more I can expand. I’m curious about the question, “What happens if I actually have support?”
Recently, I was with some friends and I was just totally overwhelmed so everything came out and I didn’t know why. I found it hard to be emotional in front of them but one of them knew something was wrong, and she just came and sat with me in my car and let me cry. She knew I couldn’t handle a hug - I would have literally just exploded, my body would have combusted! And she just sat with me, she just knew. There have been a couple of other bubbly-over moments for all of us since that moment and it’s been so nice to have that. All of us have said the same thing, how nice it’s been to have that support and how grateful we are. Also, my friend didn’t overwhelm me or push to give me a hug. Or even say things like, “Just breathe, just breathe, just breathe.” If I hear that one more time I’m going to kill somebody, and I don’t want to kill anybody!
It's taken a while to feel comfortable to express these things. It’s only been recently, because my partner makes me feel very safe. I’ve still had reactions and triggers and things since we’ve been together and she’s handled them exceptionally well. She’s like, “I understand you. I see you, and I’m here.” She just wants to know what works and what doesn’t. There have been a couple of times where she’s said, “Calm down, calm down” and that makes me worse. But overall I feel I’m in a comfortable place, I’m safe.
What helps you bridge the gap between yourself and people who may be more neurotypical?
Just being open, just being honest, and being able to say, “I’m not OK”. Even with people who don’t understand it, just standing my ground because, no matter what, my feelings are valid emotions. Again, it’s about standing my ground. I’m not ashamed to tell you that these sounds, like loud, boisterous football lads, trigger me for numerous reasons. And that should be enough in itself. If it’s not enough for you, then “Bye!” because the right people come out of the woodwork in support of that. Social media is the one place I have to interject. In real life I haven’t had to say anything recently, because people just see the life I live and know not to test these limits. It’s all worked out better when I’m honest.
Authenticity, that’s what it is.
Have you disclosed your neurodivergence at work, or with friends & family?
I’m pretty open with this stuff. I try to be as open as possible about it, because I’m not ashamed of anything that has happened in my life. I know that even if I tell people just so that they understand me better, it makes everything easier. Just the same way that somebody with diabetes would tell you, “Sorry, I can’t have sugar.” And I think that’s important, the visibility aspect of it.
The equivalent of sugar to a diabetic for me with ADHD would be sensory overload. I am like a sensory overload person, I get sensory overload very easily through things. I think maybe it’s just a forewarning of saying, “Hey guys, I’m really intense.” That sensory overload spurts itself out as what seems like mania sometimes, because it’s really fast talking or loud music. Really I’m just processing everything.
I’m open with anyone who has more than really surface interactions with me - I try to tell them in some way or another. I’m not going to walk up to someone in the supermarket and tell them I have ADHD but, for example, if I was in an office I would tell people. My fellow musicians know everything about me, as they should. I also tell my students in some capacity. I have a student I taught for two years or so and I don’t know if I said directly to them that I have ADHD, but I was very open with my experiences. Especially with anyone younger than me, I will say, “I have ADHD, I’m gay… and mostly vegetarian!” to let them know we’re visible and it’s OK to be seen. I think these things that are more taboo are better to be brought up in conversation with people.
Our brains are the just the same as diabetes or a mobility issue. My brain just works differently, I experience things differently. What’s really nice about being open about it is the people around me are really accepting and want to know how they can help. It’s like switching a pronoun - it doesn’t hurt me to make this slightly easier accommodation to make things easier for you. When I tell people about how I function, they understand things better and are less afraid when I express all my emotions. They understand why I’m giving them all my attention or if I pull back they can understand what I need in that moment.
I find I get on easier with people when they know. If they don’t know, that’s when these miscommunications happen. I thought some people I was working with on a project knew but I guess I forgot to tell them - that’s the ADHD! As soon as I told them that I was feeling overwhelmed and why, they were like, “Oh my God, we get it. Sorry we put so much on you, we didn’t realise.” So, the more open, the better life is with it. There’s no need to hide these things. Personally, I’ve found when I’ve tried to hide it it will come out in really horrible, unexpected ways. It’s like you’ve locked the cats up in the house and they’ve ripped all the curtains down. I’d rather let the cats out!
It's about connecting to people. Connecting to people is important for me, because I’ve felt like I’m so unlike everyone around me for most of my life. I feel that if I can make that connection, people can see I’m not a monster. If I’m vulnerable with them, they can see that. I feel that just by doing what I’m doing and what I enjoy in life I inspire other people to join in and jump on the train! All of my thoughts are about creating these movements to get people out and inspired, building a nationwide movement. And that’s how I feel, it’s what gets me up every day. It isn’t a sign of mania, it’s just positivity. It’s that extra sensitivity, that passion, that leads me to open up and be vulnerable. The more we can get people to engage with that, no matter where we are on the neurodiversity scale, we can achieve an easier way of life in society.
It’s just like during lockdowns with some people in shops wearing a green lanyard, so we know they are exempt from wearing a mask. I’ve often thought it would help neurodiverse people if we can have a little bit more understanding like this. If we could have a symbol and a colour that pops up next to us: I’m blue today, so everybody knows just stay 2 feet away, or I’m green, come on in for a hug!
Colour-Coded by Mike Knell
How did you experience school and education?
I did not have to try very hard. I didn’t really like to have to sit and focus on things. Thankfully, although my State’s school system was pretty bad, school was never really a challenge. I found the social aspect of school a lot harder.
We lived in the State capital for the first 12 years of my life and then moved to the countryside. The countryside was where the big shift happened because in the capital people are more progressive. The capital was more cultural, and then we moved out to farmland and it was very repressed, religious culture and they just didn’t get on with my conversations. Some of the questions I asked were just a little bit too advanced. Teachers either loved me or hated me, because I’m just curious, I just wanted to figure things out.
There were certain teachers who recognised my passion and way of thinking. I had a science teacher and we were talking about the stars in class. He asked: if you were looking around and up at the sky, how would you be able to tell the earth was not flat? And I came up with this hypothesis that the stars travel in an arc, they move around. He said that no-one’s thought of that and for years afterwards, whenever he would see me, he always called me Aristotle’s daughter. He said I just thought these things! To have somebody see that and not punish that, it really meant something. I had another teacher in a reading class and he ended up introducing me to my favourite author, because he found this book and said he thought I’d like it. I wouldn’t go to the library and pick a book, because I felt like, “What book? Help me!” So, because I couldn’t figure out how to pick a book, he took the jump and it actually blew my mind! (Side note: Invisible Monsters by Chuck Palahniuk is amazing - a lot of self-discovery in that book.) It was really nice to have these people during that time, to offer help, to say I did OK.
I absolutely avoided most social things. I did cheerleading, because I was good and I wanted to be that popular girl for a while. Then I realised all those girls are nasty, nasty cunts, and they hate themselves and they want to hate you too. I never enjoyed the rest of the other team sports; I didn’t get it, I thought why don’t we do something better with our time? So, I joined these community youth groups (4H) that were focused on different projects like showing horses, team leadership and public speaking at a national level, and we got to go to Washington DC to learn about the government and meet our senators. I fucking hated high school. I hated the activities that were there; I didn’t want to join mathletes, I didn’t want to join volleyball. I would rather go and travel. The best part about 4H is that it doesn’t matter where you come from and it’s not religion-based whatsoever. In fact, their creed, their motto, is all about helping people. It starts with yourself, then your community, then your country, then the world, and it’s all about making the world a better place. One of the last summers I was there the organisation planted over 1 million trees. It’s about organising and seeing the bigger picture. There weren’t any teachers telling me, “You need to stop talking” even when I was just asking a question. In this I could do whatever! It also helped me to see outside of the world, because I think if I hadn’t joined 4H and just stayed with what was offered to me in the mainstream schooling system I would have absolutely been lost. In school was definitely where the depressive symptoms would manifest themselves but when I was out showing my horse or being a camp counsellor or something I was in my element. There were no bad moments. It was just after those things when I had to come back to the shit of high school….
I wasn’t necessarily hyperactive when I was younger but I’m kind of surprised my Mom didn’t see it [the ADHD]. She told me we would have these marathon days, when I would see my friends and we would have these hour-long play-dates and then I would ask to go to the next one and the next one. We also used to like to go to the mall, and I used to go to every store and touch everything. I wouldn’t mess things up, I just wanted to see it and touch it all. I would go on these overloads, like, “Give me all of the things!”, total sensory overload, and then I would crash. I didn’t think about that until this conversation, and I’m like, “Dude! It makes so much sense!” And even with the school thing, it’s like teacher don’t just send me into the library to pick a book, I don’t know how to do that, I need guidance! Thankfully, when I was younger, I had enough structure so I think it was easier to not really see the ADHD. Now, it manifests in the everyday things like taking care of me. Obviously as a kid, my parents would handle the meals and the bills and the cleaning schedules. Occasionally I’d be told to clean this or do this, but I didn’t really pay attention. We had enough to keep me stimulated and moving out to the country meant I couldn’t go and run wild. When I wasn’t in school, my daily routine was wake up, muck out the horse stalls, and maybe go somewhere in the afternoon. It was really structured, even in my free time, to keep me engaged. But even then I would still act out a bit in ways because I was like, “I’m so fucking bored. I just feel so much right now and there’s no place to get any of these things out.” There weren’t similarly-minded people around me. I didn’t really have a lot of friends because we didn’t like the same stuff. Occasionally I’d have friends that liked to play board games but they also liked fantasy football, so I’d have to sit and watch football with them, really silly things like that. I’m surprised we didn’t see this in me before, because again just knowing how I was when I was younger, the marathon days were just go, go, go, go, go!
How has being neurodivergent affected your mental health?
Without support I let myself go because I worry and I focus on these things that don’t really take care of me. At least that’s what my patterns have gotten me into so far. I’ve fallen into the easier routes of things without that push, which does affect my mental health. For example, it’s been easier for me to give my time to volunteer for various projects, because I could tick all of these boxes, but ultimately that’s not what I wanted to do and that does affect my mental health. The argument with my Mom was tough, because she was trying to find out why I wasn’t able to do certain things (like chores) while I was focusing on these projects. I was really trying but I was so caught in my thoughts and it was so hard to say I was overwhelmed. All of these other things have literally been like alarms that are going off in my head all the time.
I’m in the process of learning how to take better care of me: I’m learning self-care and self-acceptance. I am starting to focus on the things that really are important and, primarily, that’s my health. I wasn’t eating properly, which means I’m not getting the best for my body. The day I cut one task out I made dinner for myself, which was like, “Woah!” Little things like that have started to change because I’m taking time to think about myself and not allowing my thoughts to take me into what looks like a manic episode.
How does your neurodivergence affect your sense of belonging, and feeling heard, seen and understood?
For the longest time that is what music was for me with regards to all of those. I find ways to express myself and I use those to connect. That’s why I have found places where I belong, where I’m safe, where I feel like people understand me. I’m not the norm by any means, I don’t have the normal encounters with people. That’s why I never worked in an office; I’ve worked with people 1:1 or with people who were just as kooky as I am. Now, in my adult life, I surround myself with people that I have been able to choose, people who relate to me.
On a day-to-day basis it is really hard. Generally speaking, I think I have to work on some of my facial expressions. If I put in effort to smile at somebody it is easier but if I’m neutral like them then it’s overload and I find it hard to connect. At university I suffered a lot because I didn’t feel any of those things, they were so hard to find. The only time I found them was in a choir, but as soon as we walked out of the room the other students became homophobic, bigoted people telling me to go to hell. Their ways of thinking and exposure to people was so limited, it was so rural.
It’s easier now in the UK. That’s why I created a work environment that shows who I am. I feel comfortable in life, in this society. I love going to London, because it’s so open to difference. I went to Camden one time by myself and I got off the train where a guy stopped and asked me, “Are you famous?”. That never would have happened in America! In the States, people looked at me like, “She’s a Satanist or she’s going to cast a spell” so it’s a relief for people to look at me here and think I’m cool.
fire! by Mandy Goldberg
How do you support your own wellbeing?
I fuel my fire as much as possible. Sometimes to my own detriment. But you know I come alive when I’m on stage, I’m a musician, I love that. I love skating and throw myself into that as much as possible. I don’t necessarily focus on the shit that drags me down like housework and work, but when I can put effort into those things I’m much happier and the world around me is a much better place.
What would you like people to know about your neurodivergence?
ADHD is not what everybody thinks it is. It’s not a 10-year-old boy on Ritalin, it’s not even a 30-year-old woman on Ritalin. It might look like manic depression - somebody once asked me if I had multiple personalities. It can look like these things but it’s a person who has the capacity to feel things in a very different way. The waves and intensity of emotion are there, like in manic bipolar, they are also there with ADHD. On paper, ADHD seems like ‘up and down’ but it doesn’t feel like that, it feels more like dancing shapes and it has more colour than bipolar. My emotions aren’t manic, they are just hyperactive.
It’s much broader than people expect, even than I expected. I did not expect this to be ADHD. I thought it would be stereotypically hyperactive, but it’s not. People think it’s a hyperactive body thing, but it’s a hyperactive emotional thing. I think that’s what it is. Rather than just the mind… well, my mind is too! It’s looks like sleeping on the couch, then skating for four days straight, and then realising you have a mountain of work to do!
It’s definitely broader, it’s bigger, than people expect.
What do you contribute to the world with your neurodivergence?
A bigger capacity for pretty much everything.
I say that as an invitation and kind of as a warning, because I know that my emotions can be really deep! I know that I can get really angry in my emotions. It’s that capacity with the ability to focus it that I think can move mountains. That passion and that force that I have, that focus that gets behind things. It gets shit done in so many ways. It helps people. I become selfish when I’m dark and internal, but when I’m out and fuelling that fire I make things happen for other people, I literally will pave the way for anyone that wants to come along. And I think that’s the good thing, when I can be seen or at least allowed to exist in this light then things will happen, opportunities will arise. You don’t have to be afraid, let’s just live. Let’s live and engage. I think I have a lot of positivity and a lot of energy. If you can connect with me and help me focus that energy, I can get shit done for you, too. I have this energy force that when focused can do anything.
If you’d like support to navigate your neurodivergence contact bryony@creativesoultherapies.com
For a good source of information on ADD and ADHD see Additude
For ADHD support groups on Facebook
For a good source of information on neurodiversity see understood.org