Neurodivergent: Real Stories #4
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 conversation about suicidal thoughts.
Interview #4
Retail worker, received diagnosis of Bipolar Type II in early 30s
How do you define your neurodivergence(s)?
Bipolar, type II.
Having bipolar makes me different, because I’m not able to stay on a level - I have these low depressive dips, followed by coming up again slightly hyper-manic and then I get back on a level. For me, bipolar is like a switch that flicks in your brain. Low, high, and back again.
Apparently, there are studies they’ve done in the brain looking at the parts of the brain that control your emotions and the electrical signals at the synapses. They show that the synapses are a lot more disconnected when people are in a low episode than when they are on a level. I watched a programme once about this kind of study and it was so interesting. They had people wearing an EEG (electroencephalogram) with electrodes on their scalp, to measure brain activity. The researchers showed them things that would normally make someone happy, then they measured the stimulation between the synapses. It was totally different when the participants were in a low than when they were in a high!
When I’m hyper-manic, or even still on a level, everything has got to be organised and in its place. My kids laugh at me, because all the labels in the cupboard have to be facing the same way or if things are on a table they have to face in the same direction. Even the washing basket with the hangers in, everything has to be facing the same way or it irritates me. In the wardrobe, I have to have everything on the same hanger style and in colour order. The healthcare team tend to say that’s more of a hyper-manic state but then I’ve always been quite an organised person. I personally don’t think it’s a bipolar trait, I think it’s a personality trait, because some of my family members are like it as well. I’d say it just gets worse when I’m in a high.
It’s things like that. When I’m hyper-manic I will freely go to a shop and spend £200 on stuff I really don’t need - that’s got me in a bit of trouble. I also write loads of lists - my partner calls it my “crazy list writing”. When I’ve come out of a low and I’m suddenly in a hyper-manic state, that is when my brain just whirs and doesn’t stop… I’ve got to do this and got to do that. And I’ve got to get things down on paper or my brain will drive me crazy, because there’s so much going on.
How did you experience finding out about your neurodivergence?
I had a breakdown in my early thirties and was taken to a mental health unit. That was when I was first diagnosed - provisionally with unipolar, which is just the lows – and then I think it was changed to bipolar under the care of a psychiatrist after I left the unit. Before the breakdown, I wasn’t having highs, lows and all that sort of stuff. But the mental health staff said it has always been an underlying thing, for example, when I look back to when I first took an overdose aged 13, my reaction to situations has always been extreme.
I think, to be honest, I wasn’t any better when I was diagnosed, so I can’t really remember what it was like. I think some of my family members were like, “Aha! Now that’s why she’s like that.” It’s only really in the last 3 years, since I had my “epiphany” as I call it, that I’ve started sussing myself out a lot more. It’s since developing my connection with the universe and engaging with spiritual work that I’ve slowly pieced things together and worked it out a bit more.
bipolar by jon jordan
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’m very sensitive to bright lights. And loud noise, particularly when I’m in a low episode. I can’t go out and there be a lot of people about or a lot of noise, things like that. Bright light I’m always sensitive to - my partner moans that we have to live like bats in a cave! I won’t have artificial light on, I always have candlelight. Artificial light feels like someone’s putting a pin in my eyes. The funny thing is, sunlight is completely different. It’s artificial light that’s difficult, and it’s worse when I’m in a low.
I guess connected to sensitivity are emotions and impulsivity that affect decision-making. It’s very intense like, “Yes, this is a brilliant, I’m in love with this person” and then very quickly, “What the hell am I doing? I’ve made a terrible mistake here.” So, a very quick flick of the coin. It’s spontaneous and impulsive.
I wouldn’t describe myself as highly sensitive – I scored 11 out of 24 on the self-test. It says if you score 14 or over you’re probably highly sensitive, so I wouldn’t say I am, but quite a few of the statements I ticked definitely, and equally there weren’t that many that I didn’t relate to.
What do you find most challenging about your neurodivergence?
The lows. Without a shadow of a doubt.
My lows used to have a pattern of lasting for 4 weeks. This year has been the worst year for the lows. I actually got to the point where, before I came out of the last low, I was literally having suicidal thoughts – not with intention – but thinking, “I just I can’t live like this anymore.” It was just awful.
The first sign of a low is complete loss of motivation. Normally, when I’m on a level, I’m very organised, very bubbly, will chat to anyone. I’m quite sociable, very tidy and organised. And in the low, everything is the complete opposite. The first thing is the loss of motivation; I start feeling like I can’t be bothered. Then it’s disengaging and disconnecting from the world. I’ll stop looking at my phone, I won’t answer calls. It gives me a feeling of panic if I know a text or phone call is coming, it doesn’t matter who it is. Physically, hygiene-wise, it’s an absolute effort even to brush my teeth. So, everything is just the complete opposite of what I’m normally like. I don’t want to speak to anyone, I won’t go out, even to the point if I’m sitting there and my tummy’s rumbling, I would rather just let it rumble than have to get up and get something to eat. And, of course, sleeping for long periods. Things like my normal little evening routine goes completely out of the window. When I’m in a low, I don’t do those things and it’s not an intentional decision, it’s just I won’t even think about it.
When I come out of the low and come into the hyper-manic state, I’m so relieved that I’m coming out of it and I’m so happy, I’m over-happy. It’s like my brain has flicked a switch and everything is whirring up and rebooting. All of a sudden, my brain starts waking up and is like, “You need to do this and this and this, and that needs dusting, you haven’t done that in ages” - it’s making up for lost time. For me, it’s almost like when I entered the low, the world stopped and when I come out of it it’s like everything starts again. I need to do this, I need to do that. And there’s so much going around my brain at the same time. I can remember once it being about 3am or 4am and I decided I’m going to treat myself every month to a beauty treatment. So, I went online and booked myself into a beauty treatment every month for the whole 12 months. And then later I slowly had to cancel them.
I have been quite good recently, I have been training my brain. Before, when I would come out of the low and go into a hyper-manic state, I’d be up all night cleaning, sorting out the kitchen cupboards, doing crazy things. Whereas now I try and train myself by thinking, “No, that can be done tomorrow.” And I make myself go to bed. Before I’d be absolutely crazy, non-stop. And the lists! Post-it notes used to be one of my things. I’d be sitting up watching telly and I wouldn’t be able to concentrate - I’d have to get a post-it note and write it down to get it off my brain. I’d literally be surrounded by post-it notes and lists, and I’d make lists out of the post-it notes to try and condense it down. I’ve got that much more under control nowadays but it used to be really bad.
What do you consider to be the strengths and gifts of your neurodivergence?
Can’t think of anything.
My partner says we always focus on the lows, because they last the longest and have more impact on daily life. The high doesn’t last as long for me, though that’s not the same for everyone. It all depends what type you’ve been diagnosed with.
No, can’t think of anything positive.
How do you resonate with the words quirky, outsider, humanitarian?
Quirky – well that’s nicer than calling somebody an outsider! My partner thinks I’m more quirky than anything else… he says I’m quite random at times, I’m not your average bird!
Outsider… I would be very upset if someone classed me as an outsider because of my bipolar. And I don’t think it’s nice or right to call someone an outsider, because we’re all humans at the end of the day. I don’t like the word outsider.
I always used to call myself the black sheep of the family, so I called myself an outsider in that sense. One of my children calls themselves the black sheep of the family now, too. I think it comes with age, wisdom and understanding that it’s nothing to do with the fact that I’m an outsider or black sheep of the family. We’re all people at the end of the day and I happen to be quite different to the rest of my family!
Humanitarian doesn’t really mean anything to me.
by Victor Roa
How does your neurodivergence affect your relationships with others?
Friends that have lost interest in the past have gone and I don’t worry about them. I think that’s why I cut my friendship group down, because as far as I’m concerned I don’t need loads and loads and loads of friends, just the handful that I have are very important to me. The friends that I have are important and special and enough for me. I don’t need to go out looking for more, I don’t need more friends.
It has affected my relationship to a certain degree with particular family members, I think. Sometimes, I get annoyed that family members don’t look into my condition or learn about it but instead jump to conclusions about things. Family members have become more aware of it as the years have passed and have come to understand it a bit better.
It did have a big impact on my children when I was in the mental health unit. They had to go and live with family members for a month, so that had an effect even though everybody rallied together and tried to make life as normal as possible for my children. My daughter struggled to understand depression in general. She was never a depressive kind of person and she couldn’t get her head around it, until she herself suffered with depression. I would say that the combination of my past drinking and my condition has more of an impact on her. It goes back to that thing again: are the addictions to do with the bipolar or the addictions to do with my personality? I think it’s more to do with my personality than the bipolar. That’s the problem with labels. As my daughter’s got older, she has more maturity and I think she understands it a lot more now than she did. Particularly when she went through her depression.
My partner had some side-effects to chemotherapy, which were similar to when I’m in a low. It wasn’t until he went through the same sort of thing that then he could fully relate, even though he was already very understanding. If I’m in a low I’ll get up, come downstairs and get onto the sofa, and that will be it. Someone who doesn’t know me or doesn’t understand bipolar would think I’m an absolute lazy slob and tell me to “Get up!” I think when he went through it himself and experienced absolutely no motivation whatsoever, he could fully relate to how my lows are.
I’ve found the Facebook group Bipolar Support Group UK helpful, even though I don’t really post anything there. I can see people talking about their medications and I realise they are on the same medications as me, that sort of thing. People talk about their struggles, particularly the disconnection thing, the disengagement. And it’s often people who are quite bubbly normally, like me. When I’m OK, I can talk to anyone, I can walk into a room full of strangers and be OK. But when I’m in a low, I can’t even socialise with my own family.
What helps you bridge the gap between yourself and people who may be more neurotypical?
That’s a tough one, that is! You’ve stumped me!
Have you disclosed your neurodivergence at work, or with friends & family?
Family and people in my circles know. It’s not one of the first things I would say when I meet new people. I would disclose when I feel I can trust the person or that they have seen me in a well state, in a good state.
I guess I’m lucky with my friends. I don’t have a massive circle of friends, because the friends that I have, my earth angels, are all I need. Those people completely understand when I’m in a low, some people might get the hump that I’m not replying to texts and things, but they do understand and they know as soon as I feel better I’ll be the first one to text and say “I’m back!”. I’m lucky that the circle that I have do understand me and know it is not intentional whatsoever.
When it comes to relationships, my current partner is the only one who’s really been able to “put up with me”, as I call it, and understand me. It can be quite a misunderstood condition. Loads of people will say that I’m hard work, but a lot of people will also say when they’ve met me that there’s something about me they just can’t help but love. There’s something about me that people are drawn to but, at the same time, I will admit and I know that I am very hard work to live with because of the ups and downs. So, relationship-wise it can be difficult.
I understand that it is difficult for people to understand the condition, because I find it difficult to understand sometimes myself! Last year, my partner’s Mum came to stay and I was in a low. For me, I felt such guilt that I wasn’t able to do things properly. I wanted her to come back when I was in a good state so she’d see that I could take care of my partner (her son) properly. I wanted to explain that I’m not like this all the time. It’s like I feel I have to prove myself.
My last workplace took me on knowing I was not long out of the mental health unit. I’ve just applied for a new job and one of the questions on the form is “Do you have a mental health condition?” I put no, because I think you’re immediately stigmatised for it. And I do get frustrated, because I am so different in a low compared with my normal self and I think people believe there’s more you can do to get yourself out of it. Like, my family would say the medication isn’t working, because I’d still be in a low, but there is no magic pill. The medication is there to help maintain things. If there was a magic pill that we could swallow and bipolar went away, well, then there’d be no such thing as the condition, would there?
Magic Pills by Jonathan Silverberg
How did you experience school and education?
Yeah, it was quite good. I was just a middle-of-the-road kind of student I think. I played up a bit, but generally quite middle-of-the road. I wasn’t down at the bottom, I wasn’t one of the top students, I was just in the middle.
How has being neurodivergent affected your mental health?
There are two main things looking back…
One of the things about me is I’m very all-or-nothing. Addictions come easily to me - it doesn’t matter what it is, I always do everything to the max. When I was about 11 or 12 years old, there used to be these chocolate bars called Golden Cups and I absolutely loved them. I’d purposely save my pocket money up, go to the shop and buy their whole supply! I’d get as many as I possibly could. Then, in later years, it would be other things. I’d go completely mad for whatever it was and then I would move on to something else. So, I could say my addiction started with chocolate, then cigarettes, then weed, then alcohol, then cocaine. I could never do things in moderation, I always had to go to the max.
The other thing is there’s the reactive, impulsive part of me. At 13 years old I had an argument with my boyfriend and decided to take a massive overdose - such a strong reaction. My terrible, spontaneous decision making that I’ve done throughout my life. Making very big decisions, like that example from when I was a teenager, they’ve often been more impulsive.
They’re the two main things that stick out in my head from younger years.
Having bipolar has a big effect on work. A really big effect. It’s very difficult, particularly for the people who don’t know me or don’t know I have bipolar, because it’s like I’m two different people. It literally is - I’m like one person and then when I’m in a low I’m completely different. That can be quite hard for people to get their heads around.
My confidence also suffers with it. I feel low self-esteem when I’m in a low. It’s just a very negative world and I’m not normally a very negative person.
The physical effect is interesting, too. I seem to deal with stress quite well at the time, well, that’s how I see it anyway, but later my stress comes out physically. For example, when my Mum and Dad split up I coped with everything and I dealt with everything at the time, but later I got poorly with a stomach ulcer, which the doctors thought was appendicitis. They then said that obviously my stress comes out physically. In my life, I felt like I’d dealt with things at the time but it’s not until years on that I realised it did have an effect on me.
How does your neurodivergence affect your sense of belonging, and feeling heard, seen and understood?
I do feel quite alone with it. Alone not with the diagnosis, but alone as in all the rest of my family are normal. And sometimes, I just wish that I was the normal one.
I find it really hard to deal with not being understood by others. It’s a weird one, because I understand that it’s hard for them to understand, but it’s still tough. My Mum is a good example of this. So, I’ve been like this for many years now and, particularly this year when my low was so, so long, my Mum would say things like, “Oh, not again!”. I’d almost feel like it was my fault and I’d think, “I don’t want to be like this”. I almost feel bad for having to say when I’m in another low… it’s like, “Yeah, again. I don’t like it either Mum!”. My family, particularly my Mum, would say it’s not right that I sleep for so long when I’m in a low, they would say I have to get up. Whereas other people in the Facebook group understand it - they can sleep for 15 hours or more, especially people who have been in a low for a long time.
I’m not one to pin things on my bipolar. I don’t like saying something is because of my bipolar, I don’t like doing that. So, I wouldn’t say I have to announce it to the world and make sure everybody is aware that I am bipolar, because I keep that quiet to people I don’t know. It’s only my close family and close circle of people that know.
I guess if I’m starting to go downhill, then that would definitely not be showing my true self, because I’m trying to hide it from people. Although, I don’t know if it’s an age thing but I find it harder and harder to put that front on, to not show someone my real self, because actually I’m the kind of person that I can’t disguise very well if I’m angry or if I’m hurt or if I’m upset. Some people can look on the outside like it hasn’t affected them but you know where you stand with me. If I’m angry you’ll know it or if I’m upset I’ll let you know.
Our Daily Challenge: Routine by Sue Thompson
How do you support your own wellbeing?
I’m just starting to learn how to do that with DBT (Dialectical Behaviour Therapy). I’ve done a wellbeing plan with my psychiatrist and then there are 3 separate modules of 4 weeks long. The approach is all about trying to lengthen the time that I’m on a level and shorten the time that I’m in a low episode. So, the wellbeing plan with the psychiatrist is about things I enjoy doing and the things that will make me feel better. I know it’s one of those things I can refer back to if I’m going into a low. I will know that I hand-wrote those things, so I know they work. It will be interesting to see what happens, because I’ve done the DBT and the wellbeing plan since being better - when I started DBT I was just coming out of a low. Yes, it will be interesting to see how and if I will do things differently in the next low using the things they’re teaching me to do.
When I’m in a low, the big thing is that I tend to sleep during the day and then I’ll be up all through the night. That way I feel safer, because I’m not going to get phone calls and things. In daytime, that’s when normal life occurs and that’s what I’m trying to shut away. I know that routine and structure is important to keep me well, so one of the things they’re saying (with the DBT) is try not to turn everything the wrong way round. So, yeah, keeping a good routine. When I’m on a level, keeping to a routine and sleep are really important. When I’m in a low, I sleep for very long periods but even when I’m well I know I need 9 hours sleep. If I get any less, I physically don’t feel right.
DBT is also teaching me things like setting one small goal, which might be doing one load of washing or having a shower. One thing during that day, because if you set yourself too many things then you set yourself up to fail. So just one thing that you can do, one thing you’ve achieved, no matter how small or silly it might sound, is an achievement. So, they’re teaching me to look at things positively rather than negatively. And also, not jumping to conclusions. Often, when I think about what someone else is thinking, I make assumptions and they could be completely wrong. When I’m in a low, I tend to get quite paranoid, I think people are talking about me. In DBT there are different exercises and scenarios to look at what that person was actually thinking, what I was thinking, and how things can be misinterpreted. It’s all about communication instead of me jumping to conclusions, which make me feel worse about myself. It’s teaching me how not to do that.
I’ve always wanted to do yoga, so I’m adding that into my routine to give myself something that is a positive thing. My brain is always thinking of other people, so it’s about finding something else that supports my wellbeing and adding it to my structure and routine. I’m just starting to implement everything really and I guess I am quite cautious about how it will be. I’m much more self-aware now of things that could trigger a low or things that are not going to help, even simple things like watching a movie but knowing it won’t finish until 2am. I used to think, “Oh, I’ll be alright with 4 hours sleep” but now I’m more aware that I won’t be! It’s things like that, which sound very simple - something a normal person wouldn’t have to think twice about - but for me it’s important to keep in check and be aware of.
Up until I found out my neighbour also has bipolar I didn’t know anybody else with the condition. She was the first person who had bipolar that I could speak to and it was so nice, comforting in way, that I’m not the only one, when I found out I wasn’t the only one. I’ve found Bipolar Support Group UK on Facebook helpful and a good support. People in the group put up questions, information about certain drugs, about things they do in a high or a low state. That gave me a lot of comfort in a way too, that I wasn’t the only crazy person that did these crazy things.
Also my spirituality and connection with the universe is vital for my wellbeing. It started with a friend who introduced me to the book The Secret and that’s what started my connection to the universe. It’s grown from there quite a lot. I’m currently doing the 12 steps, which are based around God’s or your higher power. The way I see it is that before my connection it was like walking on the wrong paths, going down the wrong avenues. With my connection, when times get tough, I ask the universe to carry me, to hold my hand, to guide me, because I will go down the paths they open up for me. It seems to work so much better in my life. The connection is invisible but I know it’s there. Like everything in this world is in frequencies and wavelengths and sound - they’re invisible but you know they exist. Like magnets where you cannot see the physical force but you know it’s there. Everything is on a vibration. And that’s how I see the universe and my connection.
What would you like people to know about your neurodivergence?
What do I want people to know or what do I want people to understand? Because understanding and knowledge are two different things. I’ve always said it is so hard to describe the feeling of what it’s like to have bipolar. Even though you can use all these describing words, like fogginess or trying to step through glue, unless you actually feel it for yourself it is hard to understand. It’s easy to describe but it’s very hard to understand. So again, until someone has their low times then they are unlikely to understand. And that’s why I try not to get annoyed or frustrated with people who don’t understand it. If they don’t go through the same kind of thing, then they will find it hard to understand. But, to be very clear, it isn’t about a mindset of, “Come on, pick yourself up” - far from it. It annoys the hell out of me if I hear that.
Bipolar is a very inconsistent illness. Your life can’t be consistent, whereas most people live fairly consistently day to day, month to month. Living with bipolar is chaotic. Life is not nice and easy and level. It’s unfortunate that I seem to have gone through a hell of a lot of very stressful things, big stressful events have happened, but, even if I didn’t have those experiences, I would still have my highs and my lows. If I was to tell someone one thing about bipolar, it would be: don’t expect life to be nice and easy, you’ve got to expect a bit of a roller-coaster, unfortunately.
And for anyone supporting the person with bipolar: be patient. Especially if you live with someone who has bipolar, you need to be pretty laid-back and have lots of patience.
What do you contribute to the world with your neurodivergence?
I contribute… a lot more work!
I can’t think of anything, I can’t think of many positive things about it. Sometimes people can be very arty - some people when hyper-manic can paint and do things that they normally can’t – but that’s type I bipolar, and I’m type II.
If you’d like support to navigate your neurodivergence contact bryony@creativesoultherapies.com
For support with bipolar in the UK please see Bipolar UK
For a good source of information on neurodiversity see understood.org