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English: A collection of pictograms. Three of ...

English: A collection of pictograms. Three of them used by the United States National Park Service. A package containing those three and all NPS symbols is available at the Open Icon Library (Photo credit: Wikipedia)

Ok so if you didn’t know I have a sleeping disorder called Periodic Limb Movement Disorder/Syndrome. It boils down to a faulty connection in my brain meaning I twitch my limbs in my sleep quite violently. It’s linked to Restless Leg Syndrome which I also have and is very rare in young people. What it really means to me is that my sleep quality is very poor because my movements keep me in the light stages of sleep and I don’t get properly rested all the while I’m kicking etc. I also get bouts of insomnia with it which often leads to a period of difficulty for me. My disorder is incurable, the doctors don’t really understand it either, and the only medication that might help is for Parkinson’s disease and therefore very bad for my health and addictive. It’s also degenerative so will get worse as I age, which can be a depressing and daunting prospect. It’s considered a disability by Student Finance England because clearly it disables me from concentrating and sometimes from attending lectures. It’s like being constantly sleep deprived.

What I actually wanted to talk about was people’s perceptions of disability, particularly when it isn’t visible. Disability simply means something that reduces or hinders your ability to carry out every day tasks. However in my experience people only think of people in wheelchairs etc when they think of disability and completely ignore people like me who seem fine on the outside, but might be struggling with something unseen. Even people who know I have a sleeping disorder struggle to understand when I’m tired despite having a full night’s sleep, or the importance of my sleep not being disturbed. I also find people can be judgemental when I’m tired even when I haven’t necessarily exerted myself much that day, and see themselves as better than me because they sleep less/get up earlier.

I imagine other people can identify with these feelings, people can find it hard to get their head around why my kicking in my sleep would make any difference, just like they struggle to understand other unseen illnesses like depression. But to my mind, just because you don’t understand something doesn’t make it any less real for that person dealing with it. Nor does it make it ok to judge them. In my experience people who have something wrong with them don’t want pity, they need understanding, we all have our cross to bare and things to deal with, and some peoples’ crosses are heavier than others. But no one wants to be seen as different, people want to fit in, but some people require more understanding. So when someone can’t do something the same way you can, rather than thinking they’re lazy or after a pity party, try to think of their world as a little different to yours with different challenges.

I’ve had people complain to me about my being tired, say that I’m being boring or lazy and try to guilt me into doing something I’m not really physically capable of. What they neglect to understand is that complaining to me that I’m boring because I’m tired is exactly like telling someone who’s paralysed off for not being able to walk up stairs. There is no difference, it is a physical barrier and therefore disability just the same. My being tired also effects my health, just like anyone else who is sleep deprived, you’re more susceptible to colds etc. So I do get ill more often than other people which obviously hinders my activities because I need that much more rest to get over it. Which is another thing people don’t understand, and they seem to think I’m always pretending to be ill.

I can understand why it isn’t clear to people how their actions could effect someone else, and how it can be easy to forget an unseen illness, and I think other people would agree. But when you do remember, just try to take it into account and put yourself in that person’s situation, a little empathy goes a long way. The only time I get actually annoyed by other people’s lack of sensitivity is when they seem to simply not care about your situation, particularly when you genuinely care about them and their situation.

The main lesson that should be taken from this is that if you see someone struggling with something, disability or not, why don’t you just try to understand them and let them know they’re not alone? Because when you’re struggling you can feel so isolated, and no one deserves that. The world would be a much better place with a little more empathy going around.

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