Neurodivergent: Real Stories #3
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.
Interview #3
Education professional, self-diagnosed hypermobility in 20s and received medical diagnosis of generalised hypermobility in late-40s. Self-diagnosis of dyslexia and high sensitivity (Highly Sensitive Person) since a young age
How do you define your neurodivergence(s)?
That’s really hard…
I sit apart from people in how I think; I always have. The best example I have is from being a kid, when I was a Brownie. We had to do a Halloween competition and make Halloween hats, so everybody had these lovely pointy witches’ hats. I made a blue pumpkin! I didn’t have orange crepe paper, I only had blue, and that was why it was blue! And I won first prize because it was very individual, but that is a very visual example that from a young age I just thought differently and saw things differently.
So, I would say from an early age that I knew I was creatively different. I saw things differently, looked at things differently and thought of things visually. I think in a more expansive way. When people think of Halloween they think of witches’ hats but I thought, “No, I’m going to do something different”, and that’s followed me along in my life.
Later in life, I’ve realised I have dyslexia, because I always had trouble with reading and writing. It took me forever to learn the alphabet and learn to read at school, so I was put with the other children who had difficulties. It was really hard, but at that time it wasn’t something they diagnosed. I remember sitting in Year 3 at school and looking at the pictures and words, and I realised I could imagine the words like pictures. Then I got on well with reading, because I could look at the words as pictures instead. I can’t do what other people do, I can’t read phonically. If you give me a word I don’t know I can’t read it, not a hope.
I’ve had clear signs of hypermobility since Year 4 or 5 of school. I was twisting my ankles all the time and I had to strap them up; same with my wrists. People didn’t understand that at school - it made me stand out and it was quite isolating. I didn’t really realise it was hypermobility until later, when I was about 20 years old. I dislocated my knee and the medical professionals didn’t believe me, that it was dislocated. They said I had bones that soften, but I didn’t think that was true. I had plenty of physiotherapy but it took them a year to do an operation to see what was really wrong. The kneecap had dislocated but not returned to its original place, so it didn’t track properly. Hence, the femur had gone into the kneecap and they had to file down the underside of the kneecap so it could track properly again. I think if I had known more about hypermobility, I’d have pushed much more and said my kneecap wasn’t in the same place as before but I was young and assumed the medical profession knew what they were talking about.
The HSP thing: I’ve had that always. When did I realise that? Probably I’ve only realised that properly since having children. When you go to baby groups, you realise that your child is not the same, that they feel things and see things differently and I’d kind of always assumed that everyone felt the same way I did. Also, talking with a friend has helped me crystallise some of the things that I didn’t realise before. For example, when one of our students was leaving school, I could see she was unhappy and upset but was surprised that someone working with her for a long time couldn’t see that until I pointed it out. And I thought that was surprising because they’d spent more time with the student than I had.
How did you experience finding out about your neurodivergence?
The dyslexia became more apparent at secondary school. Sometimes you’d have to go up to write on the board and I always got ‘e’s and ‘3’s the wrong way around. I wrote backwards and people were like, “You must be… [dyslexic]” and I was like, “No, no!” I always felt it was something to be ashamed of and something to hide, though I’m not sure why. I suspect it was my parents’ influence. I said to my parents I had this problem with reading and writing, and they weren’t very accepting of that and didn’t want to engage, so therefore that’s why I hid it.
I could have got a formal diagnosis for dyslexia, but I didn’t. I didn’t probably for two reasons: firstly, when I went to college, I met somebody who was much more dyslexic than I was. And I decided that they were struggling on with life so therefore I thought I would also struggle on with life. And it’s a bit like the hypermobility too - I don’t like to be defined by labels. Not being formally diagnosed has made it difficult in my written work, but generally I’ve found a way around it. Especially nowadays we have word processing and correcting technology so I just guess a word and something that looks about right comes out and it’s fine - although not always… for example, I have to think of a bureau to know how to spell bureaucracy!
I think if my children had the same problems, I would get it diagnosed. Retrospectively, I think it would have been really helpful for me. A previous supervisor said to me, “Think about how much further you could have gone if you’d been open about your dyslexia” and I think he’s probably right. My confidence was impacted when I didn’t perform as well as I thought I should at school and maybe with a diagnosis this would have been different.
I only discovered I have generalised hypermobility about 3 or 4 years ago, after I had an operation. It took forever to heal and I really wanted to cycle again. A year after my operation I still couldn’t get on my bike and I thought I’ll have to sell my bike. I ended up really bizarrely selling it to the anaesthetist from my operation! I said I was struggling to get onto my bike and was planning to buy a different one. He said, “Have you got generalised hypermobility?” I said I didn’t know what it was, I’d never heard of it, so he suggested I look into it.
I have generalised hypermobility, which means there are systems in my body that don’t work as well as they should have. It affects the autonomic nervous system. It means that things like swallowing don’t work quite right for me, sometimes it will go down my lungs instead and I’ll choke. It’s horrible. It means my digestive system doesn’t work as well as it should so I have symptoms like IBS (Irritable Bowel Syndrome). My bladder and bowel don’t work properly and I get dizzy spells caused by my body’s slow reactions to changes in my orientation. Lots of people say it’s the ligaments and laxity in the ligaments, but my consultants think it’s caused by the abnormalities in the collagen fibres of the fascia. And that’s why it takes such a long time to heal. Muscle can change in 6 weeks but fascia takes 1 year to 18 months to heal. And until that’s stronger you can’t build the muscle either, because the fascia (the bag around muscles and organs) has to be strong first.
I think I’m still coming to terms with the diagnosis of generalised hypermobility. Previously, I just thought I took a long time to heal but having the diagnosis recently has been quite profound. It’s made me realise that all the things that have happened in life, like the problems with spraining my ankles at school, damaging my hand and foot at college and dislocating my kneecap when I was 20, are all connected. It’s made me realise that I was right about my body. It’s been difficult in my life too, because when I started off having trouble with writing and having trouble with seeing I was different to other people, I didn’t really want to have something else that was different. That’s really hard. I wish I’d have known about my hypermobility diagnosis earlier and I wish I’d have known I was more sensitive than other people, because I think I’d have made different choices in my life. I would have chosen a different career path, because it’s lonely and isolating when you’re surrounded by people who don’t feel or think like you do.
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 got the book “The Highly Sensitive Person” by Elaine Aron. It’s really, really interesting, I really like it. What surprises me about stuff like that is I always make the assumption that everyone is the same as me. Which is stupid, I know they’re not! But with feelings I make that assumption, though I realise it’s way different.
How I see people and the world is difficult. For example, being on a crowded train is difficult, not only due to claustrophobia but because the feelings are overwhelming. I try to look down to avoid people’s eyes. Eyes are a window to the soul and I really connect with people like that, but sometimes I don’t want to because what I see is upsetting or saddening or scary. I find it very difficult to understand what people do sometimes - I can’t rationalise it. I don’t understand how people can be cold-hearted. At times, especially when I am emotionally drained, it’s horrible because it makes me feel really vulnerable.
Colours and brightness, they have a real effect on me. If I’m in a room which has my colours in it, even if they’re quite bright, I feel I can relax in that space in a way I can’t otherwise. I’m really sensitive to some smells and foods too. There are certain things, like strong smells, that I find really difficult. There are some smells that make me feel really on edge and uncomfortable, and if something in the fridge is off that’s awful, it only has to be a tiny bit off!! There are some noises I really don’t like as well. I don’t like drills, that sort of noise, though I think I also recognise that noise from my knee operation when the anaesthetic wasn’t administered sufficiently.
Music is a big one! I was the stroppiest person ever in university halls because I can’t handle loud music. Well, I really like loud music on my own terms, but on anyone else’s terms, absolutely not! It could be my favourite song but if it’s played loudly at a time that doesn’t suit me… no, no, no! My partner loves loud music all the time, across many genres I think of as depressing (things I would never pick to listen to) and it sounds like someone is depressed and crying and I hate it. At the start of our relationship, they would play lots of music and I really struggled but now we’ve reached a new status quo: I play music to whichever room in the house I’m in whenever my children and I are in the mood (we agree on our choice), while my partner has their headphones on 24/7! My children and I like upbeat music, which can be classical, rock, pop, soul, blues or quiet music, but we are quite selective, playing the genre that fits with our current moods. We usually only play music for 20 minutes or so and then not for a few days. I’m not like, “Yes, let’s rock the neighbourhood for 24 hours!!” and neither are my children.
What do you find most challenging about your neurodivergence?
As a child everybody was much better at sport than I was. I was truly awful at sports - I’m not very well coordinated. I used to be good at ice-skating but really hopeless with catching balls, I can’t do any of that. When I was really little I didn’t walk properly; I shuffled and I dragged my feet, as I couldn’t work out how to move my feet properly. My Mum sent me to ballet classes and I learnt how to walk properly, and though I still wasn’t moving properly at least I was no longer dragging my feet. I used to find that difficult because it meant I was always the last person to be picked for anything, in rounders or sports, and I found that difficult and isolating.
On a day-to-day basis the thing I find most challenging is coping with picking up other people’s sad feelings. I find that really difficult and I’ve always been like that. There have been instances where I’ve seen things that have happened to other people and I’ve really felt for them, but others don’t see the problem. It’s things like that where I pick up somebody’s sadness and I can’t help them, I can’t make a difference. I find that really, really, really difficult. I would have liked to have been a counsellor with people but I was afraid to, as I’d find it hard to put that emotion to one side. When I’m in a crowd of people it’s really, really difficult, I find I can pick up other people’s emotions instead of my own and not necessarily know what my own are. I just find it completely overwhelming and I need to go away and have my own space to recharge my batteries. The way I’ve always dealt with it is by walking for an hour by myself, and that’s what I found particularly hard when I can’t do that (because of the hypermobility symptoms). That’s the tool I’ve used all my life, and not being able to do that when my symptoms flared up is almost unbearably hard.
My hypermobility I now understand better. It’s not great because there are certain things in life I can’t do, but I can work around that. I can think “OK, I’ve got to do this, I can do physiotherapy” but I can’t change being highly sensitive. I can’t change that I feel this awful, overwhelming, dark sadness, often when I’m not prepared, like at work or in the supermarket, and people just give off this vibe. It affects my whole day. About 6 weeks ago, I was on a dog walk and the traffic was going really slowly. I came up to a small hearse with a really little coffin and I was just in tears, it was awful for a good few hours afterwards. I don’t know the story, I don’t know what happened, and that’s the thing I find most difficult. Sometimes it means I’m not in charge of how I’m feeling, mostly I’m not in charge of how I’m feeling, and it’s disempowering. It can impact on my family life, too. I don’t want somebody else’s stuff to have that effect but I can’t change being HSP.
And the noise! I really struggle with external noise being in my head that I can’t do anything about. My ex lived in a terrace and I remember storming into the house next door and turning their volume down because I just couldn’t cope. And I think now, how did I do that? And how did I get away with that? But it’s not normal!
Thingamagoop 2 from Bleep Labs by Kevin Dooley
What do you consider to be the strengths and gifts of your neurodivergence?
Being able to help people, because I can read how they’re actually feeling and I can see behind the face/mask they are showing. I think generally that’s really good, although it can be difficult because it means I can read some people and therefore I know what buttons to push to get what I want. When I was younger, I would have done that but now I think it’s disrespectful because I know I have an advantage. I know how they’re feeling or what their weaknesses are and I think it’s disrespectful to misuse that. I only do it very occasionally when I feel I’m being taken advantage of. So, being highly sensitive is an advantage because I can read people and it allows me to be able to see things more from someone else’s viewpoint than my own.
I think perseverance is a strength of having hypermobility. I’ve learnt to think, “This will take a long time so I’ll keep going, I’ll keep going.” From the age of 10 I’ve always thought, “I’ll get through this and it will be fine” - I’ve always had that perseverance. Strangely, it’s helped me to feel independent, because I know in time I’ll overcome things and get back to what’s normal for me, and that’s a strength. It’s given me mental strength I wouldn’t have otherwise. When I was first pregnant I was in a wheelchair, and when I met people with young babies they would ask me how I coped when I can’t walk up and down stairs or drive a car and I just thought, “This is my current reality, I just have to get on with it.” So, I think it’s helped me to just get on with things. Of course, there are times when I feel it’s too much, but I’ll always pick myself up and carry on. When other people have problems, I can always be glass half-full. A pessimistic attitude doesn’t help anybody! I feel I have a sort of envelope around me, like a caterpillar coat or a big sleeping bag. I have physical and mental resilience but also this energy of a cocoon that helps me.
How do you resonate with the words quirky, outsider, humanitarian?
[Dancing] – this is my quirky! Quirky: just immediately I like it, it’s a lovely word, it makes me happy and smiley and makes me think of having a boogie, it makes me think of dancing in the kitchen! I don’t have negative connotations with it, some people do but I don’t have that at all. I think of it as being interesting and individualist and exciting and fun.
Outsider, that’s different. That one makes me sad because I’ve been like that for a lot of my life. My parents are not highly sensitive at all, though my Mum’s mother was and I had a very close relationship with her. I think that really helped save my mental health because she understood where I was coming from. My granddad died when I was about 11 years old and she came and stayed with us for a number of months. We shared the same room and we used to go to sleep chatting about her life and what she’d done in her life. For me, it was really helpful she was there then, because it helped me realise that my thoughts and feelings, these overwhelming feelings, weren’t something wrong with me - it made a huge difference to me knowing that somewhere in the family someone felt things like I did. She died a few years ago and I still feel that loss very keenly.
At school I always felt like the outsider, I’ve always been like that in comparison to other people. Secondary school I was definitely that, I went to an all-girls’ school and it was awful. I lived 15 miles in one direction and everyone else lived 15 miles in the other direction, so I never saw anybody outside of school time and it was very lonely. Not just because of the distance, but also because I didn’t understand the people at all and they didn’t behave as I would have liked. I stood apart because I could see their insecurities - high sensitivity gave me insight beyond my years, which meant I had more in common with the older pupils than those the same age. In addition, my floppy joints meant I was teased about my body, especially as my hands naturally drooped. My year group were really quite unpleasant and they got security from their cliques. It was horrible as I clearly didn’t fit. I think if I had had my hypermobility diagnosis then they wouldn’t have been so cruel. I’ve always stood apart from other people, often not by choice. I don’t like that word outsider, it makes me feel sad, it brings a whole lot of memories that aren’t positive.
Humanitarian, hmm. That’s a mixed bag. Humanitarian effort and people doing things to help others is amazing. But the reasons that is necessary, that’s just awful. Some of the things you see - refugees, crises, famines… I don’t watch the news, I just find it too upsetting and I always have. I drove my parents mad, they thought I should know about things but there’s never been much positive in the news. Recently, I started listening to brief news items, only to hear what the latest restrictions were. I do my work because I think I can make a difference to people’s lives and I like making a difference to pupils’ achievements and enjoyment of learning. I find it difficult to see things that I can’t change or when pupils aren’t managed properly. I love seeing my work make a difference and that makes me feel good, but that is balanced against the bad.
please remain calm, everything is fine by Robert Couse-Baker
How does your neurodivergence affect your relationships with others?
A lot.
When I was younger, being HSP meant I didn’t really understand exactly how friendships worked. Later on in secondary school, I watched people and learnt what you were supposed to be interested in, what pop groups you were supposed to like and that sort of stuff. I learnt to put forward what people were expecting rather than myself. I learnt to hide who I really am, and that has made life difficult for me. As I’ve aged, I’ve realised that those who are truly your friends accept everything you are - good and bad - and still love you, so I hide much less.
I’ve definitely been through a phase where I tried really hard not to have relationships with people or not to connect with people, because I found it too overwhelming and upsetting. I can remember going to stay at a friend’s house from college when I was about 17 years old. I told her, “I’m not very good at being close to people, I find it really hard,” and she was very cross about this. She told me, “No, we’re going to have a friendship whether you like it or not.” It’s interesting, because these were my thoughts when I was 17 and I was finding it really difficult to interact with people on a level that I didn’t find hurtful or upsetting to me. I couldn’t correlate how I felt and understood things and how other people did. It was so far apart - people would treat me in a way that I would never treat them, and I would lose trust in them. I can rationalise it now: they’re not as sensitive, and therefore it’s not a reflection on me. These days, I have to think about how I see things and how to explain myself clearly so people can understand, or I have to say to myself that something’s upset me but that’s not how they meant it. Or it’s that I’m sensitive. It’s hard.
I find that with my sister, my relationship with her is not what I would love it to be. There have been so many times when she’s upset me so much that now I can’t give her my full self any more. I can only give her a bit of my choosing: I can tell her about my everyday life but not my inner life. And it saddens me because in my head I’d like her to be totally different to what I’ve got. You feel that family members should be the supportive people but it isn’t this way and it still makes me sad.
My parents now accept that I have hypermobility, although my Mum forgets. I think my Dad feels very guilty as in my teens I often injured myself and I think he thought I was attention-seeking. I’m sad that I have passed hypermobility onto my children, too. I think they feel it’s a burden, but my relationship with them is open and honest and it doesn’t affect the relationship itself. Luckily they have much milder forms than I do, which I am truly thankful for.
Probably the most difficult relationship is with my partner. They find it very hard to accept the medical diagnosis. We used to play football with the family, and my partner would tackle me and I’d end up limping for months on my ankle. I’d always felt that my body was rubbish at healing, but it’s much easier now because I know there’s a reason. I have spent over 20 years doing different physiotherapy exercises without a sustained improvement, so my partner has been sceptical about my latest rehabilitation. They’re worried I’ll spend all this time on physiotherapy and at the end I won’t be any better - that has been difficult. Positively, they are now starting to see improvements as I am able to do things I haven’t for many years. I understand it is very hard for others as hypermobility is an invisible problem and therefore in the initial stages of rehabilitation only the patient can feel the improvements. But it is hard.
Being sensitive to stuff and being different to other people I know and accept much more now, so that’s not a problem. But my partner struggling with my medical diagnosis is the hardest thing, as it means they have struggled to step up and support me. And that’s a problem that wouldn’t be there if I didn’t have hypermobility. I don’t know what the outcome of that will be. They are now starting to see how much stronger I am becoming. My dream is that my partner will eventually believe in my positive prognosis, however I will never be physically “normal” so it may impact our future. I love them to bits, so it’s hard. Someone once asked me if I can be with this person, because they believe I need someone to accept me for who I am and support me no matter what. I wish I’d had more life experience and had known my diagnosis because then I would know my partner chose me knowing what that entails. I am glad that medicine has moved on and people are often diagnosed as children nowadays - I hope it will save many heartaches. I know others, who were diagnosed later in life, whose partnerships have not survived their diagnoses. I think the critical point here is that it can take many months of intense physiotherapy for others to see changes, so it is really important that people are aware of this, keep going and don’t lose hope.
What helps you bridge the gap between yourself and people who may be more neurotypical?
Probably being able to read people helps me bridge the gap, because it means I can change my behaviour towards them so it fits into what works better for them. However, that’s not always good for me. I’m just starting to realise that being myself is the most important thing. I think to myself, “I’m quite different to these people for a whole lot of different reasons and I can bridge that gap but actually is it the right thing for me?” Because I still have to be true to myself. I think being highly sensitive means you can bridge gaps easily, but then you’re not being true to yourself and then you end up with a problem for you. That’s the only thing I can do with my family, that’s the only way I can interact with them. I fulfill that role, but it means I dread seeing them because I have to put on a mantle which isn’t who I am. I try to bridge the gap in my marriage and help my partner understand, but it has variable results. They are not neurotypical, either, and they are so involved in their own world at times that they really struggle to come out of it.
Our bubble worlds by Sara Biljana Gaon
Have you disclosed your neurodivergence at work, or with friends & family?
Generally, I haven’t told my managers about my dyslexia because I wouldn’t feel comfortable telling them. But usually when I’ve worked with someone for a certain amount of time it becomes obvious or I’ve been upfront about it. In a previous job, I was writing a legal document and I wanted to write “opposed by” but I wrote “a pose by” and I didn’t realise there was a difference (I know now!). My boss at the time found it hilarious, in a friendly way, because he knew about my dyslexia and it didn’t go out of the building. Of course, when I make mistakes like that the spellcheck doesn’t tell me, but mostly it’s OK.
My high sensitivity I don’t discuss as people don’t generally understand so it’s not helpful to either me or them. I am usually open about my hypermobility but I only discuss the details of how it impacts my life with those close to me.
How did you experience school and education?
I didn’t like school very much. In fact, I hated it. I didn’t focus on the subjects or anything at all. When it came to exams, we had to revise for three or four weeks and I didn’t do anything, I didn’t try. I got the prize in Year 11 for being most improved, because I hadn’t done anything at the beginning and I would always be bottom of the class. Not in maths actually, in maths I always did well. But in the subjects I actually had to learn something, I found it so boring. That’s because I didn’t gel with any of the people there so it was a really unhappy, isolating experience. Combined with my parents not understanding my sensitivity, it really impacted my self-confidence and self-belief for a long time. I remember at my degree ceremony my Dad saying he didn’t think I’d amount to anything, he didn’t think I’d get A Levels let alone a degree! They didn’t realise I’d disengaged with school, they just thought I was stupid. But it’s really hard, if you spend such a long time with people not believing in you, you start to think maybe they’re right, maybe their reality is my reality. That’s why I started working hard at the end of school, to prove to myself I could do it. I thought if I do something maybe I will be able to achieve it! I wanted to know more and that’s why I went on to university. I always had the belief in myself that I was brighter than my results were showing, so I never thought I wouldn’t be able to achieve that.
How has being neurodivergent affected your mental health?
It has been extremely hard. There have been periods where I have been mentally very low. These have especially focused around times when I have struggled to make myself clearly understood on paper and have underachieved as a result, when I have picked up lots of negative emotions around me (the worst have been when I have been the cause of these) and finally when I was unable to walk. Walking is my form of meditation, so that was debilitating. This has happened many times in my life so I can at least say to myself now that I believe I will always return to my normal state of being able to walk a few kilometres in nature. I think positively this has been my saving grace.
I have had a number of failed relationships with both partners and friends. This is because of my high sensitivity, which has caused conflict where I was just unable to reconcile some of their actions. I couldn’t understand how people who stated they cared about me could treat me in a way I could never treat them. Additionally, when I was younger, I really struggled to work out what the best actions were and, in trying to please everyone, ended up letting everyone down. These were hard times but I have learnt from the experiences that I mainly made in early adulthood. To carry these experiences in life, my philosophy is that you need to learn from your mistakes and not be broken from them, but move on knowing you won’t make that error again and remain optimistic. I think that is the only constructive choice.
How does your neurodivergence affect your sense of belonging, and feeling heard, seen and understood?
I would say that I don’t really have a sense of belonging. Actually, I don’t think that’s completely true now… I think I have a few good friends who I belong with because they get me, they understand me. And that I really value. Belonging as in to a group at work, or to family, or belonging to a particular club, no, none of that, that doesn’t fit in with me, because I don’t have the right relationships with my parents or sibling. I do get on well with my uncle and cousins but belonging at work, no, I haven’t felt like that for a long time. I stand alone and I get my sense of self worth within me rather than through the job, so I don’t fit in that way. At a previous workplace I would say I belonged there more, because it was a real team where everyone shared their ideas and we planned a way forward together.
Feeling heard, hmm… As a kid, no, not really, apart from by my Gran. Feeling heard by my friends when I was a child or growing up, no, not really until I met a good friend at age 17. I was very good at faking it, but it wasn’t genuine. Now I feel heard by my few good friends as an adult. At work, certainly in my last work, yes, my opinion was very listened to. In my current workplace generally I’m not very expressive. Am I heard at home? My children hear me, my partner doesn’t hear me as I would like to be heard. They hear what they want to hear or what they’d like me to be saying, not what I’m actually saying. I don’t like confrontation and sometimes they play on that. It means if I do want to be heard I have to go at it 3 or 4 times and that’s overwhelming to do. However, if it’s important, then I do persevere.
Being understood… [ironic laugh] – not often! Again, with my friends and children I am. At work, no not really. Very occasionally I’ve worked with people who have understood me but not very often, not enough for me to make the effort to keep in contact with them. With some people the vibe didn’t feel right to stay in contact. I feel now I’m able to project more of who I am, knowing that I’m highly sensitive and hypermobile, so I have a particular way of interacting with the world. Prior to that, I would have been presenting a very incomplete picture, whereas now I can say I do have this problem with my body, so because I understand things like that more clearly, I’m able to make myself better understood. But I’m still not always good at it!
I think I have to be honest with myself about who I am, and that’s varied a lot over the past few years. I question am I more sensitive than other people? I think sometimes I put on mantles, but they’re not necessarily who I am. That doesn’t work well, it makes me feel like I’m fooling myself and other people. But sometimes I’ve felt like I’ve had to do that to fit in, which is rubbish.
Don’t hide your true self!! by Sander van der Wel
How do you support your own wellbeing?
I think that’s a work in progress! I think I’m still learning who I am and where I am. I’m still on those journeys and conversations like this really help because it gives me time to think about it.
I think since my generalised hypermobility diagnosis I’m better at it – I now try and go for a walk by myself 3 or 4 times a week to give myself thinking space. I try and eat a healthy diet. I’m very in touch with what my body wants to eat or feels like eating, and I try and be true to that. I buy things that I really want to eat, even if sometimes they’re a bit expensive! I realise that I need good sleep and physiotherapy time - I know they make a difference to my life, so I always make sure the time is there. What I’m not so good at is that I can be tired and should be going to bed early but if it means not seeing my partner that day I won’t prioritise sleep.
I’ve been trying on and off to do meditation, sometimes I’m better than others – depending on children and holidays etc.! I need to put it back in, because it shows me that’s really important for my wellbeing. Without it I go a bit nuts! Without it I’m like a full bucket and then anything else floods over – it feels like, “Oh God, I can’t cope with that” and that’s not the person I am. I tend to try and keep myself learning something new. I always like to be learning or doing something, studying something, so that my brain is active and that’s important for me and my wellbeing. I need to have something to focus on, but also it’s really important for who I am, because I have a thirst for knowledge. I like to be challenged, otherwise I feel I stagnate!
What would you like people to know about your neurodivergence?
When you look at the brains of people who have hypermobility in an MRI scan, actually their amygdala is different - a different size or shape or something - and that’s why we feel anxiety and fear in a different way and more heightened than normal people. Add in the highly sensitive stuff too and that’s great [irony]! It means that people who are hypermobile are in a much more heightened state of awareness and therefore, for example, if someone asks me to do something, I immediately get nervous about it in a way that a neurotypical person wouldn’t. So, if you ask someone who is hypermobile about something they need to contribute to, it’s important to be aware of the impact. The same goes for highly sensitive people too (I think hypermobility and HSP cross over) - I think you need to be really careful what you ask of someone. You may not appreciate the amount of stress or nerves or worry that go behind it because it isn’t what you would experience.
My partner occasionally asks to bring a colleague home for dinner and I immediately get stressed. They don’t understand the effect it has. I’m sure there are “executive wives” who are entertaining all the time and they don’t feel the same worries! And that’s probably not well appreciated. It’s important to realise that sometimes what you’re asking people to do takes a lot more energy out of them than you might have realised. Being highly sensitive you think of everything, what it would involve, how it might impact different people and different parts of your life etc. and other people don’t do that at all! That’s probably the thing I’d most like people to understand. I think it would be great if I could switch bodies with my partner for a day. There’s a massive difference between reading these words and being in that situation. Could I make someone feel highly sensitive for 24 hours? I’m sure there’s a drug or injection or something! I think it’s really hard and well worth remembering that you can’t know what it’s like unless you’re in someone else’s skin.
What do you contribute to the world with your neurodivergence?
Ooh, that’s a good one. Hmm. I think really that goes back to what I was saying about work – it means I’m sensitive to people’s feelings and can help them to talk their feelings through in a way that is generally really helpful for them. It can be difficult because I can sit down at a rail station or something, and I end up getting someone’s life story about what’s gone wrong. I suspect the world has put me and them there because the person needs someone to talk to, but sometimes I find it heavy going.
And maybe giving people more of an understanding of what hypermobility actually is for me, and therefore offering greater understanding of how others with the condition might be. My consultant has always been really impressed with my mindset and positive attitude. She’s setting up an online support group for people like myself, for people in pain who have hypermobility, and she’s asked me to be her expert patient because she says I present well and have gone from awful pain to being pretty much pain-free. So, I’ll have that opportunity to talk to people and encourage them. If that does happen then that will be something else I’ve contributed to the world. Showing people I have made things better and am coming out the other side of it, can be helpful for others.
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