Have you ever had one of those clothing labels that just feel itchy and irritating? So much so that you have to remove it? Now imagine they all felt like that. Imagine you could feel the touch of a single hair landing on your arm like it was a big spider crawling across your skin. If you can imagine that, then you can almost imagine what it’s like to be me.
Hypersensitivity can be many things, but touch is, to me at least, the most irritating of them all.
Some mornings I change clothes several times before I find something I can wear that doesn’t feel wrong. It’s not that I care how I look, it’s because it doesn’t feel right. I’m not comfortable. I feel restricted, or perhaps I can’t wear the fabric because I am constantly irritated by it. It’s like when you wear a terribly itchy wool jumper, only all fabrics can feel like that to me.
It isn’t the same every day either. Some days I can’t wear trousers, and must wear a skirt of some kind, but then again, some days I can only wear trousers. Some days a fabric irritates me, some days it doesn’t. One thing is certain though: some things feel good every day. It’s not often I find things like that, so when I do, I protect it like nothing else. I bought a winter hat back in the autumn of 2010 and I still wear it now. I can’t wear any other warm hats, except that one.
I don’t know how others on the spectrum feel about this, but I hate it when other people touch my things. It can ruin it completely for me. If someone, without asking, put on my warm winter hat, I am not sure I could ever wear it again. And you have to understand, for someone who’s only been able to wear that one winter hat since 2010, it would be a disaster. I honestly don’t know if I can find something I’ll feel comfortable wearing ever again. It might mean I never go outside in the winter with a hat – and I’m really not joking.
To you, a hat might just be a hat, but to me, it’s my only hat. Everything else I’ve tried (and trust me, I have been looking for a new winter hat since 2011) have always felt horrible and I either wear the one hat I’ve got, or no hat at all. I have two caps I can wear as well, but they are not warm, and it does get awfully windy and cold up here in the north.
It’s not just clothes though. It’s everything you can touch; keys on a PC, a mouse, a mug, a fork and knife, a table, a chair, a bed, a handshake or a hug. It all feels so much more intense to me than it seems to with others.
I am not sure you understand how much this affects my life.
I can’t sleep at someone’s place – not even if it’s someone I’m dating. I don’t hold hands walking down the street. When I visit people, I prefer to sit on the floor. People probably think I’m mad or that I’ve just gone native after living in Japan for a while. The sofas and chairs are usually not something I can sit in. I always preferred sitting on the floor, ever since I was a little child. As a matter of fact, I can’t remember not preferring the floor of a stranger’s house to a chair. I can’t always drink from their mugs because they don’t feel right – although some of my friends let me choose my own mug, which helps a lot.
Sure, not all sense of touch is bad. It’s just, the good goes bad quite quickly. Touch; It can be cold or hot, gentle or rough. It can make your heart flutter, or your stomach turn. It’s not always good, not always bad. When it’s bad, however, it’s really bad.
When I was in university, it was an even bigger problem. It all went from bad to worse when I started my masters, which I completed by sitting at home every day and isolate myself from all social interaction. I couldn’t get the help I needed at the time. I was on my own, just like so many other adults who are on the spectrum, because as adults we’re supposed to just work harder and everything will be fine. I won’t talk about my masters in too much detail now, it was a very dark period of my life.
My bachelor’s degree was also a very dark period of my life. I seem to have had a lot of bad periods in my life, I know. About roughly 15 years of my life was one bad period following another. I have had a tendency to jump from one self-destructive thing to another. The years I studied for my bachelor were quite a bad kind of bad though. I drank a lot. I smoked a lot too. Both things seemed to numb my feelings, which meant I could get through every day.
Most people don’t know how much a drank, but I drank very often. I got drunk at home alone, so that I could sleep at night. I drank when I was social, so that I could survive being social. I drank when I was at university to study, so that I could numb my feelings and try and study with people around.
Obviously, studying while drunk is not the best of choices, but I got by. I never got good grades, but I got by. People though I was stupid anyway, so no need to study, or be sober for that matter. Besides, everyone I talked to drank, or used some kind of drugs, so it was easy to fit in.
I never used drugs, nor was I ever tempted to do so. I was once, as a teenager, drugged without my knowledge and it was a very painful experience to me. Therefore, I never drank so much that I lost control and I never voluntarily took any drugs. It was like game; drink enough to numb yourself, but never so much that you can’t remember or lose control of yourself. In the end, it was a game I played only too well.
Cigarettes helped me when I wasn’t able to drink. They calmed me down, they gave me something to do with my hands. Today, I still miss the activity that smoking gave me. I try not to drink or smoke too much. Not because I don’t want to have drink once in while, but because I want to find another way of coping with life. Also, being isolated, there’s no need to drink or smoke.
Life. It’s really difficult and drinking and smoking is not the way I want to survive. I don’t want to turn to those things as a solution to my pain, and when I don’t I might consider my strict approach to drinking and smoking. I do like to get beer with good lunch and one day I hope to do that because I enjoy the beer and food, not because I need to numb my feelings and senses so that I can interact more easily with others.
You see, there is a lot of touch when it comes to social interactions. You have to shake hands or even hug. You have to meet in odd places, sit in strange chairs, drink from awful mugs and wear shoes that aren’t as comfortable as they are pretty. If you don’t, people might treat you like you are mentally backwards and that they are doing you a favour by hanging out with you.
Everyone is not like that, sure. But you see, it’s difficult to stop masking once you’ve done it for 20 or 30 years. It’s quite scary. I know that I can say ‘I can’t sit in those chairs, let’s find another café.’, but I don’t always say it. Some days I have to check ten cafés before I can find a place where for example the table is okay. Other days, I can handle the furniture of the very first café I enter.
That’s the thing – I have bad days and good days. I wish people would accept me on my bad days, as well as on my good days. Only thing is, people only ever remember the bad days I have. They get annoyed if I can sit in a chair because it feels wrong, or if I can’t drink from the mug, they placed in front of me. Of course, if they made the coffee themselves, it brings a whole array of new problems, but that’s for next weeks post.
Working at a desk, writing like I am now, is always problematic. If the desk is the wrong size or height, for instance, I can’t focus at all and I feel like the only thing in existence is that evil desk. Then it feels like the whole world is bothering me, the desk is taking up all other space and it can – I kid you not – provoke a meltdown on a bad day. Then you have me sitting on the floor crying and shaking for hours, while the desk is just there – mocking me.
At university, while I was studying for my bachelor, our building was rather isolated from the rest of the university. The campus is actually in several different locations all across the city, so it’s like the whole city is one giant campus. Trust me, for someone like me, it’s not cool.
We had our own private library, in fact there were two in the building, but we only really used the one. It was small, with narrow passages leading to a single table and chair at the end of each row of books. All the tables were separated by bookcases. In time, I found a table that was just right. Not all the tables or chairs were different to most people, but to the trained eye (or the eye of someone with O.C.D.) they all had their own strengths and weaknesses. There were tables and chairs in that library that I didn’t sit at twice, they were so horrible. And yes, I did notice when people changed chairs or tables around – why would someone even do that?
My table was perfect. It was close to a window, which was covered by tall building outside, therefore letting in very little light, but some. The height of the desk was just perfect for me, and being quite tall, it can be rather hard to find a table that has the proper height. The chair was made of wood, not any of that soft things that some PC chairs are often made of, and it was not adjustable, but just perfect height with that particular table.
I loved it. I could study there. The desk lamp had a soft glow, and the books were on a topic rarely anyone ever read, which meant I had it mostly to myself.
The problem was, I couldn’t study anywhere else. If someone sat there, in my seat, I felt as if I was in physical pain. I don’t know how else to describe it. I couldn’t focus or even function, when someone else sat there. Whether it was a stranger or a fellow student, it didn’t matter. I was distraught when I came home after a failed day of studying, because someone had sat at my place, at my perfect table. I drank and smoked even more, otherwise I couldn’t relax enough to sleep. Sleeping always was a challenge to me, even today I struggle with insomnia-ish nights.
The funny thing is, I could have solved all this by investing in a proper desk and chair at home and just never gone to university – excepts for classes of course. Although when I was drinking, I did tend to skip a lot of those too.
This leads to another problem though: isolation. I might be on the spectrum and bad with social interaction, but it doesn’t mean I want to be alone forever. I don’t want to be alone, I just need to be alone to recharge sometimes. Okay, a lot of sometimes.
The point I wanted to make is just that touch is something that affects us in ways we don’t always realise. Sometimes, when I have a bad reaction to something, all I need is to do is just mentally take a step back and re-evaluate the situation. Is light hurting me? Is it some colours that are painful? It is something I smell? Is it a noise? Oh, it’s just that the table is too high. I need to do something about that and I’ll feel a little better.
The thing is, being on the spectrum can sometimes feel like a constant quiz. I can’t just assume something is bothering me because it’s something that would bother someone else, nor can I assume something won’t bother me, because it doesn’t bother someone else. And most of the time, I can’t tell at first what is causing me pain. Yes, pain. Because I can’t describe it in any other way.
When I feel the pain or frustration, I have to figure out what is causing that pain – like a twisted treasure hunt. Luckily, when I find the source of the pain, I can do something about it. Before, I just believed it if people said just the touch of that particular fabric can’t feel that horrible. Now, I’ve finally learned to trust myself, if not completely, enough to know that sometimes, yes, it can feel that horrible.
The first article I wrote about this is called Hypersensitivity, and in case you want to know more about this topic, it’s a great place to start. You can also just skip to any of the other senses, which are: Sight, Hearing, Smell or Taste.
