If you only read for the hot posts, look away now.
When I set this blog up, I had no idea what it would turn into. My Twitter bio quite clearly says that I write about ‘sex and disability,’ but whenever I do, I feel slightly guilty, like I’m somehow letting down my readers. I lose followers, too. But I fully buy the argument that you should blog first and foremost for yourself, so this post, as you might expect of one written at 4am, is really a post for me. To help me make sense of things.
I have a friend who also has a medical issue that dates back to birth. In the last 5 years or so, she’s on occasion expressed frustration with doctors, saying that they never really understood her condition so what’s the point of expecting them to find long term solutions to pain and other problems that flare up. My answer has always been that things have changed since the early 80s. Doctors *do* have knowledge and solutions now that they didn’t have then.
What I didn’t realise was that that applies to me too. Naively, I thought that because I have a condition that affects 1 in a 1000, it was common enough that doctors understood it inside out, and always had.
That, of course, is not true. And it’s frustrating, given that I last saw a consultant at the age of ten. Since then, my only contact with medical professionals around the whole issue has been when something flares up. Knee and hip pain might get me referred for an MRI. It might get me onto a waiting list for a handful of sessions of NHS physio. I no longer get to talk to specialists about it.
Which means that occasionally, I stick whatever symptoms I’m having into google with ‘+ hemiplegia’ tacked on the end. ‘Depression + hemiplegia,’ ‘Anxiety + hemiplegia,’ that kind of thing. And HemiHelp, which is what that link above leads to, is a massively useful source of information.
Last night, I was talking to someone about why I feel so low, or, more specifically, why I feel so lonely. Part of the problem is that I feel like I don’t know how to connect with people – I have problems with small talk, bonding on a superficial level and making new friends. Sometimes, I said, it feels like I might be borderline autistic.
Well, she said, perhaps that’s true. Have you looked it up? So I did. And here’s what came back:
The answers to ‘does your child have associated conditions?’ were as individual as the children themselves. ‘Yes’ is the short answer, for 69% of parents. A majority of parents said that in addition to the visible physical effects of their hemiplegia, 67% of their children have learning difficulties, while 42% have epilepsy, 40% have visual impairments and 34% have speech impairments. Autistic Spectrum Disorder was also reported by a significant minority of parents (14%). Even more parents (86%) told us about other associated difficulties, with the main problem being irritability (61%). This is followed by attention span (59%), anxiety (55%), visio-spatial issues (50%), maths (49%), obsessiveness (44%) and reading (38%) (Parents’ survey: the findings. http://www.hemihelp.org.uk)
Ah. Suffice to say I think I have a fair few of those issues. Irritability? Definitely. Obsessiveness? Yes, that seems fairly accurate too. And the Visio-spatial issues and maths problems are also relevant.
So perhaps that’s why I have problems connecting. Perhaps that’s why I’m bossy, self-absorbed, selfish, and bad at friendship. It’s not a get out of jail card, but it helps to know there might be a reason for it.