Dealing with disbelief

I made the mistake of starting to suffer from chronic fatigue at a point where it wasn’t reliably being diagnosed. My doctor at the time did not believe it existed, and treated me accordingly – with scorn, suggestions that it was all in my head and the assumption that I just wanted to get out of PE. And yes, I did want to get out of PE because PE was hell, for a whole bunch of other reasons no one knew were issues. Whatever else was going on, my distress never seemed plausible to him.

I had no idea, as a small child, that most people weren’t in pain. Other kids did the things I couldn’t do, and seemed to be ok. I’m not sure why I concluded that they were all just making less of a fuss about it, but that’s child brains for you. I certainly had plenty of encouragement to think I was just making a fuss and not trying hard enough.

Now we know how hypermobility impacts on people, what was happening for me is no great mystery. Everything takes me more effort than is typical. Many things cause me pain. I hurt and damage easily. Taking my weight on my hands really hurts me. Also I have a lot of issues with being upside down, I still hate it, I still find it stressful but as an adult I don’t have to deal with people forcing me into those positions.

At this point I’m fairly confident that I don’t express pain – be that physical or emotional – in a way that makes much sense to a lot of people. My default is to explain, but I tend to be calm. This is to do with my coping mechanisms, and being used to pain. It meant I had a lot of trouble persuading anyone I was in labour, and went a long time with no pain relief as a consequence. It may have coloured all of my interactions with the medical profession. There are a number of people in my history I am fairly sure had a problem with it.

I’ve been told I come across as cold, unfeeling, uncaring. I’ve been told I seem manipulative. I guess if you expect people to present pain in more dramatic ways it might be hard to believe a person who is saying calmly that they’re in more pain than they can bear. Panic can make it impossible for me to present this way, but I’m not always panicked. 

Somewhere along the way I missed all the memos about appropriate expression of feelings. What seems normal to other people doesn’t always make much sense to me. I’ve spent a lot of years trying to figure out what it is that gets some people’s distress taken very seriously, and other people ignored. From what I read, I’m fairly sure privilege is a big part of it. The more advantages you have, the more likely you are to be taken seriously about problems you encounter. White men are more likely to get their abdominal pain taken seriously. Black women die in labour in disproportionate numbers. 

How we expect people to behave is clearly informed by all sorts of things. But it isn’t a fair measure. Ignoring distress because it isn’t being presented the way we expect, or assuming a person will overstate because of who they are, is really problematic, and there’s a lot of it out there. Much of it is far worse than anything I’ve had to deal with, but these are the illustrations I have to work with and I hope they are useful.