Neurodivergent: Real Stories #2
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 conversation about suicidal thoughts and self-harm, as well as some swearing.
Interview #2
Health professional, received diagnosis of dyslexia and dyspraxia around 7-8 years old and realisation of high sensitivity (Highly Sensitive Person) in early-20s
How do you define your neurodivergence(s)?
Hmm, that’s a really tricky question because I think we’re taught to not see it a lot of the time, and I wouldn’t have necessarily put myself in the category to begin with, which, reflecting on it, is a bit like, “Where is the boundary?” There isn’t one, it is a spectrum, there’s no polarity to it. Of course, there will be degrees of difference but not a polarity in itself.
Being sensitive or an empath has been a self-diagnosis. Mainly over the past 4 years, in my early 20s, with the help of a therapist - that’s when it started being massively on the horizon. And there were also conversations with colleagues and other therapists about my sensitivity too. I think I started blocking my sensitivity around 7 or 8 years old, even from myself.
How would I qualify myself? I guess I’m interested in people’s sensitivity and people’s non-sensitivity and their inability to see or want to see. I have a fascination with human sociology and trying to understand how people work, and it’s a gift to be able to see those different perceptions. For example, even in an argument I’ll be able to see where the other person is coming from and I won’t be stuck in my own perspective. This comes with its own complications I suppose! That’s why I can be really indecisive, things like that come down to my sensitivity really. And I don’t want that other person to feel like I’ve felt in the past - not understood or rejected somehow.
…I’m diverging!
I’m diagnosed dyslexic and dyspraxic as well, slightly. I am in denial about the dyspraxia!
Around the time I was 8 years old, my Mum had me diagnosed. I would never want it to limit me so I’m really reluctant to take on the title and I feel that dyslexia and dyspraxia can be limiting self-beliefs. Although I’ve never found it limiting and therefore I never disclosed it at university. I never had extra time for exams or assignments, because I never needed extra time. I can read and write pretty damn quickly, and my reading comprehension is actually quite good. It was modified by using corrective lenses when I was younger, so I’ve put it down to that.
I think dyslexia is often a different way of thinking and a different way of learning. I do resonate with that and I do identify with certain aspects of it, but I wouldn’t say that it’s a hindrance for me. I know it is for other people, and I completely respect that. For example, I very much need to write things down to have a chance of remembering it. I also think that dyslexia is having a slightly different perspective, maybe being a little more open-minded. Then it blurs into life experience, and what my experience is versus what others’ experiences are, so it’s hard to differentiate how I’ve been brought up and what life has thrown at me, versus what is a way of learning or a way of thinking. So, I do find it difficult to answer the question!
How did you experience finding out about your neurodivergence?
When I was younger, I was really struggling at school. There was a lot going on emotionally, because we’d moved country and I’d changed schools three times in 2 years. I started taking ages to do my homework, I would sit there for 3 hours to do 2 multiplications! I just didn’t get it or couldn’t get it. One of the other Mums at school was working with ChromaGen lenses, which were mainly for colour blindness, dyslexia and ADHD. There are about 10-12 different tones of lens and the colours correlate with different needs: the blue ones correspond to dyslexia, ADHD seems to correlate more with pinks, and colour blindness seems to be more of a mix. My Mum had already taken me to a couple of clinics who diagnosed me as dyslexic and dyspraxic, and they’d given me loads of corrective exercises and stuff which didn’t seem to do much. But once I started wearing the glasses, all of a sudden everything clicked and I could do my homework within about 20 minutes! The lenses seem to regulate the light that enters my brain, and I still use them to help with the ‘noise’ in my brain. I used to have two light blue lenses, and now I have just one dark blue lens.
Sensitivity has been a rediscovery, because I blocked it for so long – probably for about 15-18 years. It hasn’t really changed much but it has opened my mind to how everyone works differently and that fascinates me. I’m now really trying to work on my difference not coming across as critical to other people, because sometimes for me to understand someone I will question them and that can come across as critical when it’s not meant to. It’s just inquisitive. So, I’m really trying to soften, because sometimes I can see things that they can’t even see in themselves and I’ve realised that it’s pretty mean to lump them with it! Because I can see it, I’m like why can’t you see it, you obviously know, right? Turns out, no! It’s caused some arguments… so, it’s still an exploration for me and I’ve realised that a) it’s about perspective, and being able to see something from the outside is always easier than from within, and b) it’s having enough emotional intelligence to name that in the right way. I think emotional intelligence (EQ) is so deprived here in the UK, more so than anywhere else I’ve lived, and generally I think is lacking in humans in the West specifically.
Emotional intelligence mind map, the 1st by Tracy Rosen
In Divergent Mind, Jenara Nerenberg makes the case that all neurodivergence is linked by sensitivity. How would you describe yourself in terms of sensitivity?
There are words floating around like empath, or Highly Sensitive Person, or sensitive, or things like that. I’ve been told I am, but I don’t know…
Let me describe it this way… I can tell if someone wants to cry, I can tell they want to cry before they can tell. So, I guess I am sensitive in that way. I’ll be passing the tissues, because I know tears are coming. I don’t know how I know; I just know. Maybe that makes me an empath or Highly Sensitive Person? It’s a label, and at the end of the day labels are just a way of putting ourselves in a category. So, I wouldn’t qualify myself with any particular label, just as someone that sometimes happens to know how other people are feeling. It’s not an aversion to a title, it’s an aversion to being put into a box so that people can relate or understand. But aren’t we all just human? Some things do resonate and others don’t, you can tick some things on the list and not others. It’s divergent, isn’t it, and everyone will feel quite differently.
I remember a session where my therapist said, “You are empathetic, you are an empath” and I was like, “I don’t think so, I really don’t think so” and that sticks in my mind very clearly. But they were very clear I am, and I remember thinking, “I don’t know, I don’t know”. It was quite early on in our sessions that they made that connection. I had been saying that I think I am sensitive but I don’t know how much, and someone else had said I was an empath and again I was reluctant to take the label because a lot of the time I don’t think I am a “true” empath. I have a friend who can walk onto the bus and see someone and say, “They are in heartbreak”. I can see the pain, but I think everyone has pain and we’re all on a journey. I don’t get those extra snippets of information so I wonder if I am really an empath, I don’t know. I compare myself to other people, who may be more clairvoyant. I would say that I’m more intuitive, and becoming more so, and I do know things but I’ll realise a couple of hours later and wonder, “How did I know that?”. What I take away from that therapy session is don’t beat about the bush, yes, I am pretty sensitive.
I’ve always been sensitive and I think as a kid more so. From the age of 8 I really started trying to block it because it really was too much and people made fun of it. I didn’t feel understood. And I think that was probably the biggest thing, feeling misunderstood and not feeling I can show who I am, because of the fear that it will trigger that rejection again. But that’s from much earlier in my life when I was so sensitive and the world was just a bit too much. For a long period even the word “sensitive” was still too much, I bottled it up, and no-one saw it was too much. It was that disconnection from myself and disconnection from the sensitivity that probably did block it all.
I’m sensitive to other people’s emotions and sensitive to information uptake as well, as in reading a book or watching a film, I feel that a lot. I am really able to see where they’re coming from, really empathise with what they’re feeling and how they’re feeling. I know a lot of people cry at films but it seems to be slightly different, because I’m putting myself in their shoes. I’m sad with them, rather than for them. And what I’ve started to explore more lately, is that I feel more too than maybe some other people; I might feel it more deeply or I might be able to understand it in a different way. For example, a throwaway comment is not just a comment, it’s everything that goes with it, and it triggers a spiral of thought and everything which goes with that, which is fairly exhausting a lot of the time. Maybe that’s a normal thing, I don’t know! Maybe lots of people do that. This is what I know, this is what I do. What do other people do? What’s normal? I don’t know!
I also have the urge to do better and be better. This is massive for me, that growth and wanting to be a better human. It may be part of the HSP stuff as well, I don’t know.
What do you find most challenging about your neurodivergence?
One thing is not being able to have strong boundaries; I find it really difficult to go, “This is mine, this is yours”, which can be really exhausting sometimes. And the fact that I don’t want other people to ever suffer like I have and therefore I am over-giving and I put myself into the mother figure, the giver and healer, which is how I am at work too and is why I find work exhausting a lot of the time. It’s just so exhausting to understand other people’s feelings all the time and know exactly where they’re coming from, but I’ll be trying to see it from my perspective too, and it comes to the point where I don’t know what my perspective is any more because I can see theirs. It’s a continuous spiral all the time!
The only way I’ve managed to come to terms with things and process things is taking myself out and having alone time. I’m having “intro-days” – introverted days, quieter days, with no plans, a little bit of flexibility. It’s a way to “let the dust settle” is how I would explain it. Because I often feel overstimulated, and then I feel anxiety because of the overstimulation.
There’s tiredness and anxiety that comes with it, feeling a bit different and not quite part of it all, wanting to be normal and feeling like you never will be, feeling like there’s no home, things like that. That’s complicated by my upbringing but still there’s a longing for that real connection to somewhere and it’s like it’s not here on Earth. That longing, I think that’s part of being HSP, apparently, or maybe for anyone who is neurodivergent. Sometimes I have wanted to throw in the towel, not wanted to be around anymore, because it’s so tiring to be in that space all the time, to have those questions in your mind, to have that longing. I know that nowadays it’s part and parcel of who I am and it’s very much integrated thanks to therapy and coaching, but growing up especially I had a sense that this is not my place, questioning, “Where is my place?”. I didn’t feel like I fit in anywhere and what’s the point of all of it? It can be quite overwhelming in that sense too.
All of these Emotions of Mine by Ryan.Berry
What do you consider to be the strengths and gifts of your neurodivergence?
I think the ability to connect and see people. I take a lot of pleasure in that, even though it can be tiring too. To be able to fully see someone is an amazing opportunity. To be able to really empathise and understand. I think a lot of people really appreciate that and, when it happens, I really appreciate it too because it makes them feel good. I’m here to serve, to make my world, my community, a better place. And when this connection with another person happens, I feel that it’s a challenge accepted, a day well done, a pat on the back!
People often feel very comfortable to open up to me, even if they haven’t been asked! That seems to be a quality of HSPs too, right? I remember going to a BBQ with an ex-partner and someone opened up to me about a family member passing away, and my ex-partner at the time asked how I’d got that within about 5 minutes! And I was like, I don’t know, I just asked how they were! Sometimes ignorance is bliss - not knowing about the circumstances of every single person that you meet - but then it becomes so beautiful when you do connect with someone and you can nourish that relationship. Yes, it can be really beautiful too. So, there is a flip side of the coin.
Apart from that I think it’s also a mindset thing: I take a lot of pride in being able to see the different parts of a person and circumstances, and myself as well. My core belief is that no-one is evil at their core, that we are all inherently kind souls, so it’s usually if someone is going through something or reacting to current or past trauma which will make them behave a certain way. Being able to see through that and see that actually it is just a reaction and this person is going through their own challenges, well, it can be tough sometimes but I think it is a gift too. Being able to see those dynamics, a) I find it fascinating and b) I think it can help mediate as well.
I think maybe my capacity for introspection is higher too. Sometimes people mistake it for intelligence, but I don’t think it’s intelligence! Maybe emotional intelligence, but not IQ-wise! From the outside, I think people would say I am well-attuned with people, that I can relate well with people through my role as a “healer” and help bring harmony to the body. I don’t know if that falls under the category of HSP or who I am. I definitely resonate with the archetypes of the “healer” and the “mother”. I am also quite spiritually connected and open, though I think I take it for granted and I still feel blocked in my connections, expression and seeing. It’s becoming easier, and there is more information coming through that I don’t know how I know, like claircognizance. In 10 years’ time it would be really interesting to do these questions again and see how this has all progressed!
I think I also bring a fresh perspective but I can’t say for sure because I don’t know any different! This is just who I’ve always been and I can’t compare it to being anyone else because, although I can empathise, I am not anybody else!
How do you resonate with the words quirky, outsider, humanitarian?
Interesting.
I wouldn’t necessarily qualify myself as quirky, but I think my friends might. We were talking about the sitcom Friends and who we see ourselves as the other day… I said I would see myself as Monica but all of my friends see me as Phoebe. Quirky is an interesting one, because maybe I don’t qualify myself as quirky, but maybe other people see me as that. Maybe because I’m trying to control it and not come across that way! It’s who I’m trying to be versus maybe who I am… if I weren’t trying to be Monica, who would I be?! It would be very interesting!!!
Outsider – yes, always. But now I think it’s not a problem any more, because I don’t feel excluded. If anything, I probably exclude myself as a choice, as a conscious choice, when I know that I need some time away or I step away sometimes from being so emotionally invested. Because emotionally invested is my natural state, I have to consciously take a step back and say, “This is not my problem.” And maybe in groups I exclude myself as well, I don’t put myself in the limelight and that’s just a lot more comfortable for me. Not pushing myself has been quite a beneficial change. But then, it’s almost like wanting to be seen and not being seen, it’s quite complicated.
And humanitarian: it feels like a desire rather than a reality. My work is pretty humanitarian, trying to help people, but charging people for it doesn’t feel humanitarian. I guess we live in a capitalist society, which sucks. I’d like to do more but I haven’t had time, and it can be challenging to get into humanitarian work as it can come with moral and inclusivity complications. Wanting to help and creating community are desires but not necessarily the reality at the moment. I probably don’t participate as much as I would like to in the bigger causes.
How does your neurodivergence affect your relationships with others?
Me and my Mum are very similar in a lot of ways, which has many positives. The difference between us is that she doesn’t need to rationalise her feelings, while I need to understand mine. I have that curiosity and she doesn’t, which can create some friction. To process things I need to name them, process them and understand them, in order to transcend them.
With friends, I seem to be the support a lot of the time. I would say I’m the support, and I’ve been called the “glue”. I’m sometimes not very good at initiating but everyone knows that my presence is there. And I’m not very good at asking for help but I think that’s just a me thing, not an HSP thing. My thinking is, “I will be able to do this by myself, I do not need your help, thank you very much.” My leg may be trailing behind me, but I will get myself to the hospital, I do not need you to drive me. I’m just stubborn!
With partners, I find it really hard. I find it really hard to let myself be vulnerable, which I know is what I need to do. But I feel like they will never understand because they don’t understand themselves, so how can they ever understand me? That might be a judgemental point of view and I might not be giving them enough credit – probably not – but I think this way because I haven’t felt safe in the past to be vulnerable. I feel safe now within myself, which is a big step, but because I didn’t feel that way for so long, I couldn’t allow someone into my space because there wasn’t that safety there to begin with. Also, having that constant feeling that I couldn’t be myself, because that sense of safety was taken away at such a young age, that’s probably what blocked it to be honest. It’s not them, it is me, and it’s a work in progress.
Not feeling safe has been a big thing recently and I’ve come to the realisation that safety isn’t just a physical thing or being under attack, but also the space you create and being able to enter that, which I haven’t previously allowed myself to do. It’s mainly with partners, with men, that I find it harder, but I feel very much like I’ve entered a very different space now to the one I was in before. I’ve been working hard the past 8 months on this, and it’s creating that space for myself to be able to be open and allowing and softer, because I’m not. Softness with myself is not my forte, because I felt from that space that I had to be someone that I wasn’t. I see myself as having been in the “warrior” archetype, as the knight and the fighter, of having to be something and be someone. And I think I spent a lot of time in that space.
Keeping things close by Sacha Chua
Have you disclosed your neurodivergence at work, or with friends & family?
No. I’ve only mentioned my dyslexia but that’s as far as it’s gone. Apart from one clinical workplace who knew as soon as they saw me that I’m an HSP!
I have multiple work spaces. In clinical practice, I think my patients feel safe and listened to and invested in, which is my utter intention of what I want to create in that space. And maybe some of that does come with the emotional investment that is typical of HSPs. Other health professionals may not do that, but that’s me.
I haven’t disclosed in my other work space, but maybe I should. I think they’ve realised that I’m different, but they might not know how. I see where the problems are and poke a finger at those problems, and that seems to be quite challenging for my colleagues at times! I don’t know if that’s part of being HSP.
How has being neurodivergent affected your mental health?
So, as I said earlier on, around 7-8 years old it was really tough and I started blocking everything. As a result, because I felt I couldn’t express myself, it all built up and I had some rock bottoms, where I really, really, really didn’t want to be here. I have felt depressed and suicidal, experienced despair and self-harm, which was a way of expressing what I couldn’t express. For me, the self-harm was never attention-seeking, in fact I don’t think anyone actually knew, but there was so much pain inside that I needed to express in some way and having that physical pain was manageable, whereas the initial pain was too much. One dark period was literally a year and a half of despair every single day: dark day after dark day after dark day, whereas now it might last a few hours where I’m kind of like, “I don’t want to do this anymore”. And now, I realise, I can snap myself out of it, change my perspective, say to myself, “I’m here for a bigger purpose, to grow and have lessons”. I’ve learned how to see it in myself so that I can correct it quicker. I figure you’re on the rollercoaster anyway: either you put your hands up and celebrate or you cling on for dear life - it’s your choice! And it’s been a big journey to learn it’s OK to have bad days, to feel, to create a different experience, that I have the power to do that, that I can make that decision, that I have that choice, and to want to make that choice for the growth I can gain in this lifetime. And, though it’s been a couple of tough years, it’s coming up to 10 years of not doing anything about it (self-harming).
So my mental health has been up and down, and it still is to a lesser degree. I end up comparing myself with other people. I surround myself with HSPs, because that’s what I attract, but I guess I am jealous of my friends who can be sensitive and allow themselves to be sensitive and don’t try to block it. My default is still, “It’s fine, I’ll be fine” and not allowing myself to feel the uncertainty, all of my feelings, the sadness, the heartbreak, even the anger. I think I felt anger properly for the first time about 6 months ago, and that was a completely new experience for me. It was a sort of rage - I didn’t know where it came from but it’s also been quite liberating. It’s been a journey!
How does your neurodivergence affect your sense of belonging, and feeling heard, seen and understood?
It’s still in process, all of it!
With feeling understood, I think a) I don’t really give people the chance because I assume that they don’t (which is my fault) but b) people are quick to discard and quick to judge sometimes, which is quite hurtful so I don’t put myself in that space. This is when it’s a case of me perceiving things very differently, because they don’t seem to get it. For example, a friend might comment on my relationship with another friend by saying that I’m too good and too kind, that I’m giving too much. They dismiss it, my way of being, they dismiss it by giving it adjectives, and in that way I feel misunderstood. It’s like they’re addressing the tip of the iceberg but there’s the whole iceberg - and I can see the whole iceberg - and pointing out the tip is like, “OK, cool, thanks, I guess we’ll talk about something else then…”. People find me annoying because I like jumping straight in and going really deep and finding the bottom of the iceberg, and some people aren’t comfortable with that.
I am very much still discovering what it feels like to be heard. I’ve felt heard in things like therapy and coaching and stuff. I’m not very good at voicing my needs (shock!!) so I can’t blame anyone but myself for not feeling heard. Not feeling seen is much the same: I show aspects of myself in specific ways, either, a) to show them what they want to see, or, b) aspects of me that I want them to see. During my longest relationship, I probably didn’t disclose how spiritual I am because at that time it was a point of shame and guilt. To this day he probably doesn’t know, but that’s fine. So, again, it’s about what I let on and over the last couple of years I’ve been really realising what has been happening. Especially in the last 8 months there has been a bigger change within me. So, I’m slowly but steadily trying to be less mysterious in that sense.
Now, I’ve realised that if I don’t open up a little then that’s what I’m going to meet in return. So, if I close off, it’s going to be hard to establish a relationship, either romantic or friendship, it doesn’t matter. If I’m not willing to let people in, it’s going to be very much a one-directional relationship, which is what has happened a lot in the past. I guess I’ve realised that and I don’t want that to continue happening. I want my relationships to be reciprocal. And I’ve had to make a conscious effort to do that. Again, it’s because of everything I’ve blocked and everything I don’t want them to see. I’ve felt like I’m holding back; for example, I won’t be expressive and I will focus on the other person. I can tell my life story with facts like where I’ve lived and where I’ve travelled and so on, but I see myself as more than my experiences, and it’s important to me now that I can let people know who I am, what I am, and what’s important to me, not just in my work roles but also as a human. I want to communicate my values, what I want and what I want to do. Previously, I didn’t have the capacity to do that, because I didn’t even know myself. And that’s part of being able to show up a little bit better. Because I can give, give, give, but that’s just not sustainable! I’ve realised that’s not what I want any more and I want to attract new relationships… we’ll see!
With regards to belonging, I think you find your people and your community. Once you start to allow different things, you attract a different sort of person. I’m very much enjoying discovering who I can attract now, and it does seem to be very different. Not just romantically, but also friendship-wise. Hopefully it’s more mature, more rounded somehow, this is a new dimension of person. Some people can be 2D, like they’re wearing a mask and you can’t get around it. Whereas now, I’m attracting people who have taken the mask off, or at least if they put a mask on they’re conscious of wearing it. It’s now people who do the work. This gives me a sense of being understood, which inherently gives a sense of belonging.
open up by Arden
How do you support your own wellbeing?
I engage in a lot of personal development work. I can be too critical of myself, so I may be taking it a bit to the extreme! The Jungians call it shadow work, finding the root and the cause and working through it. So there’s a lot of that, self-inquisitiveness, but there’s also just removing myself, having more time to myself. Eating properly, doing exercise, having a routine, has been massive. I was always one of those sceptics - even as a health professional – who dismissed these things like eating and sleeping well, but it makes a massive difference and I feel like an absolute twat for discarding it at certain times in my life! And there’s meditation as well, which again I don’t always prioritise.
Another one is gratitude practice – previously I’d downplayed it as just a fad, but I’m coming up to 6 months of a near-daily night-time gratitude practice, and I feel things in a different way now. I focus on feelings and what I want to create, not only what I’m thankful for, to find that deeper meaning for what I’m grateful for. I spend 10-15 minutes every night and it seems to make a big difference.
Personally, I have acupuncture once a month and I find it grounding and balancing, and really helpful with hormones. I have Reiki once a week at the moment, which is so good. I’m a complete nerd about new esoteric and weird and wonderful therapies, so if I find one I haven’t tried I normally go and try that too! I was saying to a friend just the other day, how do people without a spiritual practice or emotional therapy or even physical therapy, how do they do it? Because I find it absolutely essential. We hold so much and we just need that little bit of guidance to let it go and shift it.
What would you like people to know about your neurodivergence?
I think the world is already on the right track, in the sense of acknowledging that everyone is different, that we have to express ourselves and say when we are struggling and when we’re not. I guess I’d like people to simply be kinder when it comes to trying to understand other people’s experiences, even if they don’t correlate with our own. I mean, just being a little bit more sensitive! (…Ironic!) More sensitive to other people’s experiences, acknowledging we will get things wrong and that’s fine, and we will disagree and that’s also fine. But we have to be kind. We might have to agree to disagree and that’s it. We’re all going to have different experiences, different opinions, different knowledge, come from different directions and different perspectives, and I don’t think we have to invalidate either/or. They’re both completely valid and worth expressing. I think it sometimes feels quite daunting for someone who doesn’t experience life in the same way as a lot of other people to express how they live life in a different way to other people. But both have to exist, and the whole has to be said.
What do you contribute to the world with your neurodivergence?
I try to contribute and at the same time I am one human, just one, and how much difference am I going to make in the grand scheme of things? Probably not a lot. But what I am trying to do at the moment is encourage people very slightly, very kindly, very compassionately, to look within slightly more, maybe look at things with a different perspective, and acknowledge that a lot of the time people are kind. And when they’re not it’s not necessarily anything to do with you, and it’s probably to do with their circumstances on the day, the time, the place. I like to create a little bit of kindness, even if it’s just within my own circle and creating compassion when I can. My choice at the moment, very consciously and purposefully, is to make the world a better place. Whether I do or I don’t - sometimes I do and sometimes I fail - I’m only human, I’m imperfect. I’ve been brought up to always try my hardest and try my best, and so that’s what I try to do at all times, that’s really engraved in my essence. And, you know, sometimes my best will be crap but it’s the best I can do at the given time. And coming to terms with that has been hard but it is what it is.
If you’d like support to navigate your neurodivergence contact bryony@creativesoultherapies.com
For more information on Highly Sensitive People please visit hsperson.com
For a good source of information on neurodiversity see understood.org