This picture came up on my Facebook feed this morning and made me smile because it’s pretty much an accurate description of my brain! I’ve had obsessions ever since I can remember- when I was really little, it was the colour yellow (EVERYTHING had to be yellow and when I started school, I wouldn’t use a pencil unless it was yellow and my mum had to explain to the teacher that I had a fixation on yellow and that it wasn’t an issue but it would be easier for everyone if I was allowed to write with a yellow pencil) then it changed to Button Moon and Maple Town before Play Days and the Sooty Show which I can still remember episodes of vividly now at the age of nearly 30 and occasionally show kids I babysit, and at age 7 the yellow obsession changed to purple which was more socially acceptable at school and also happened to be the colour of the Unicorn Club in Sweet Valley which became a pretty major obsession from the age of 8 and is still there in the background now as is my lifelong merpeople obsession. Over the last 20 years, my ‘major’ obsessions have ranged from Bad Girls and Disney to languages and fairy tales, David Bowie and Pink Floyd to Narnia and Harry Potter, Formula One and astronomy to Pokemon and the Sims and most of them have carried on in the background mainly as coping mechanisms, occasionally reactivating while my ‘current’ obsession is very much Homeland and Carrie Mathison in particular.
These sorts of obsessive interests are something that’s really changed who I am, how I live my life and the way I look at things in a mostly positive way, and now I think of them as ‘good’ obsessions. I haven’t always seen them in that way- until I was in my early 20s, I hated my obsessions because they were ‘weird’ and people often commented on the intensity of them. As a teenager, I tried to write my GCSE English coursework about Bad Girls (which wasn’t allowed), virtually lived on the Bad Girls message board which I’ve recently reactivated, watched Bad Girls DVDs incessantly, took the book with me everywhere, tried to get other people to watch it too… My mum thought it was ‘wrong’ that I was that obsessed with a TV show and banned me from mentioning it at home, and that made it even harder. At school, I was obsessed with languages which led to a slight idolisation of my languages teacher and I was told that that, and the fact that all my friends were several years younger than me, was “worrying”. If I’d been born two years later, I’m pretty sure my Asperger’s diagnosis would have come a lot early than age 19 and maybe I wouldn’t have felt like such a weird obsessive freak but in the late 90s/early 00s, not many people had heard of autism and I had no idea that obsessive interests are one of the key characteristics of autistic people, along with difficulties making friends your own age, needing to stick to routines, ‘latching on’ to specific people, seeming ‘weird’ or not fitting in, getting exhausted or overwhelmed being around people, and basically everything I thought was ‘wrong’ and hated about myself growing up. Which is one of the reasons I’m so passionate about promoting awareness of autism now!
Now, at the age of nearly 30, I actually really like and appreciate my obsessions and wouldn’t want to lose the ability to hyper-focus on specific topic, have an encyclopaedic knowledge of everything about it, and having the amazing, hyper-excitement of watching/reading about/writing about whatever it happens to be. Thanks to the internet, I’ve been able to start a Homeland blog which people actually read even though each blog post is obsessively detailed and close to 10 000 words per post. I’ve since expanded into twitter, instagram, Facebook and email accounts for my Carrie blog and a lot of people seem to think that I’m actually involved with the show or with the character which I’m very definitely not and keep reinforcing that but it’s so nice that people think that level of interest or obsession is a positive thing and so many people have given me lovely feedback and seem to consider me some kind of Homeland expert which is AMAZING. If the internet had existed the way it does now when I was a teenager, my Bad Girls obsession might have been more acceptable and this sort of connection is one of the main reasons I use the internet so much.
The downside to having an obsessive-type brain is that there are also ‘bad obsessions’ which I hate more than any other aspect of any mental health issues I’ve experienced and which I’m still trying to find strategies to deal with. These didn’t start to develop until I was in my early teens and I can remember vividly the first time I experienced it at the end of Year 8. They range from OCD-type thoughts to paranoia and sometimes both, and nearly always involve other people. My first experience of it was when I was 13 and went to a kids’ club during the summer. I made ‘friends’ with one of the young leaders who was 19 at the time, and started to really look up to her. This meant that I started be become hyperaware of everything I did/said and started to get a lot of anxiety about upsetting her or doing something wrong. I was only in the kids’ club for two weeks but the fixation about wanting her to like me lasted about nearly six months. I had no idea what it was and really, really hated it as well as being a bit scared of the way my brain was fixating on another person. It wasn’t a ‘crush’- there were no romantic or sexual feelings, but I ‘needed’ her approval and that really freaked me out because I hadn’t experienced anything like that before.
That sort of fixation happened several times when I was a teenager with different people I looked up to (teachers, adults I admired, college tutors, nurses etc) and I had no idea how to manage the feelings. It was INTENSE- like constant vertigo/anxiety and occasional palpitations if I got too affected by it, and it made me feel so guilty and physically sick. There wasn’t any sort of physical attraction and I kind of wished there was just so it would ‘fit’ into some sort of category (a ‘crush’ would be so much more acceptable than a weird, intense ‘need you to like me’ sort of thing) but it sort of took over my life when I was a teenager to the point that that person’s approval was the most important thing in the world to me and I would do ANYTHING not to upset them. Apparently this sort of thing is actually pretty common in people, particularly females, with ASD but since I’d never heard of autism or anything even vaguely related to that when I was a teenager, I was convinced there was something seriously wrong with my brain and that I was a weird freak who would end up as some kind of stalker when I was older.
Because I didn’t understand the obsessive thoughts and feelings, I had no idea how to manage them and they started to manifest more physically- vertigo and nausea, and almost constant shakiness. I’m still not totally sure how it got to the stage that it did but at the beginning of Year 9, I decided (completely irrationally) that the reason I was getting these thoughts/feelings and the reason I didn’t have many friends was because I’d put on too much weight and developed too early. I think it might partly have been because the intense obsessive feelings started around the same time I got my first period and I’d put on a lot of weight over that year (which I know now is a biological change due to developing breasts and hips), but I decided to be ‘healthy’ and lose weight in an attempt to get rid of the feelings. So, at the beginning of Year 9, I stopped eating anything that wasn’t 100% healthy and became slightly obsessive about what I did/didn’t eat. I can’t remember much from that time except that my mum thought I wasn’t eating enough and when I passed out at school, she made me go the GP who referred me to an eating disorders service but I never went to the appointments and I think people must have forgotten about it.
I didn’t really lose weight at that point even though I’d cut down a lot on my food intake which I can see now was because I was still growing but I thought it was because I wasn’t trying hard enough. By Year 10, the obsessions had intensified to a point where I genuinely couldn’t deal with it much longer- it was starting to really interfere with my schoolwork and a lot of people at school, including teachers, were commenting on it and I felt like a really, really horrible person. So I started skipping lunch at school partly because of nausea and vertigo, partly because my friends were all a lot younger than me and had a different time to go into lunch, and partly because I wanted to actually lose weight. I realised pretty quickly that being hungry ‘overtook’ the vertigo and started to miss breakfast too. By Year 11, I was going days without eating then being ‘made’ to eat by my mum which would lead to bingeing and vomiting, and I had the amazing realisation that vomiting was the most effective solution I’d found for ‘getting rid’ of the vertigo and nausea because it was physical and ‘forced’ the feelings out of my stomach. They came back pretty quickly afterwards but during the binge/purge itself, there was a brief escape which I started to get dependent on. After GCSEs, my mum made me go back to the GP because I’d started to feel dizzy a lot but I didn’t tell her about the vomiting and just said I’d been tired so she did a blood test and told me I was anaemic. That was OK for my mum so I started to take iron tablets and since I hadn’t really lost weight at all, she didn’t comment on my eating habits.
That cycle carried on for the whole of Year 12 but by the summer, I realised that it wasn’t enough- it was helping to ‘manage’ the obsessive thoughts/feelings and stop them from getting too overwhelming but I really needed to actually get rid of them. They’d spread to friendships by that point and I’d lost several close friends by being too intense/clingy or getting paranoid that they weren’t talking to me and over-texting, and I was finding it so hard to deal with. I also had A levels coming up and I hadn’t done as well in my GCSEs and AS levels as I knew I could have done because about 80% of my brain was taken up with obsessive or paranoid thoughts, and I knew I needed to do something about it. The bingeing was OK but it was only a temporary relief and I’d stopped getting hungry when I missed breakfast and lunch. So, in Year 13, I decided that I was going to try to ‘take control’ of my body and try to get rid of the vertigo/nausea completely. I devised a ‘healthy’ plan which involved exercising several hours a day, not eating anything that might trigger a binge (because I was aware that you retain about 70% of the calories from a binge and I knew that might be a reason the vertigo came back), and eating less than 800 calories a day spread out during the day to try to speed up my metabolism.
At first, I still didn’t lose weight and the vertigo/nausea continued but after a couple of months, I noticed that I’d started to get hungry again which again overrode the vertigo. I got really excited about that and reduced my calories to 500 a day, and finally started to lose weight. Amazingly once I’d lost just over a stone, the vertigo and obsessive thoughts disappeared completely and I just felt numb and slightly zoned out which was like euphoria compared to the intense vertigo/nausea I’d experienced for the previous few years. So I kept up the weight loss, reducing calories to 300 a day when I stopped getting hungry again, and by the time I did my A levels my brain was clear again and I could actually focus on revision and getting the work done. I ended up getting a lot better A level results than I thought I would- big improvement on GCSE and AS levels, and I felt calmer and more ‘acceptable’ than I had done since primary school. Unfortunately, the weight loss had become an issue physical health-wise and I had to go into treatment as an inpatient in an eating disorder service which kind of took over for the next few years which I won’t go into here because that’s not the point of this blog post.
The really frustrating part of all of it is that I kind of have to choose between ‘bad’ obsessions and ED thoughts and for me, the ED side is actually easier to deal with because I don’t feel like such as weird, horrible freak and it’s more ‘understandable’. It’s also complicated by the ‘bitch in my head’ (see Inside my head… and Thinking about the Impostor Phenomenon and the Inner Critic) who approves of the ED restriction and exercise (although she hates the bingeing) and criticises me constantly for being such as weak, obsessive freak and giving in to obsessive thoughts and urges while also telling me that people hate or aren’t talking to me which makes my brain feel like it’s jammed and totally contradictory. She shuts up when I lose enough weight which is another reason that being a low BMI feels safer. But I know that being severely underweight isn’t a good idea for so many other reasons (osteoporosis, heart problems, impact on kids, people judging you, feeling like you’re genuinely going to die every time you get even a minor cold) and my metabolism seems to have adjusted to a low calorie intake now anyway and I gain weight if I eat more than about 600 calories in a day.
I’d love it if my brain could just have ‘good’ obsessions and never have the horrible, paranoid, vertigo-y obsessive thoughts that have led to losing nearly every close relationship I’ve ever had, but I have no idea how to have one without the other. Another reason I don’t like being underweight is that I feel dissociated and numb most of the time which means no ‘bad’ obsessions but also no positive ones which wasn’t a problem when I was a teenager and thought the obsessions were weird anyway but now I really rely on them as a way to channel extreme emotions or distract from paranoid thoughts. It feels like my life’s a constant distraction technique though and I always seem to be trying to manage obsessive thoughts or compulsive urges and intense vertigo or a stinging/choking sensation in my chest, and I don’t know if this is just part of having ASD or if there’s something else I can do to get rid of it. Am currently trying to access mental health services in a new area in the hope that someone can tell me what it is and how to get rid of it, so am REALLY hoping something will help although having been accessing various services on and off for the last 16 years, I’m not overly optimistic…!
So far, the positive strategies that I’d found that do seem to have some sort of useful effect are writing (blogging and creative), DBT skills particularly the emotion regulation and distress tolerance, Harry Potter skills (see Mental Health Awareness Week 2016, Part One: HARRY POTTER and Occlumency), some aspects of ACT like being compassionate to or ‘accepting’ the bitch in my head and trying to acknowledge what she says without actually believing it, and seeing the bitch in my head as a separate ‘being’ who isn’t reflective of absolute truth or what is actually going on in my brain. They don’t always work and some days, nothing seems to work but the thoughts and feelings are definitely less intense than they were when I was a teenager (which is definitely partly due to medication but I don’t think that’s the only reason) and I’m really hoping that I’ll come across a strategy/therapy/model that actually works completely some day… Any input welcome!!
Thoughts from an Iridescent Starfish 