I first started having serious, inexplicable problems with exhaustion when I was about 14. My doctor at the time told me that it was ‘psychosomatic’ and mostly because I didn’t want to do PE. That it was impacting on my ability to dance and that I really wanted to dance, didn’t seem to matter.
In recent years I’ve identified a number of things that contribute to me having no energy. I get bouts of insomnia. I’m very hypermobile, this means everything is harder for me than it is for many people. My digestive system malfunctions when I’m stressed (probably because of the hypermobility) and failing to digest food isn’t good for the energy levels. I bleed heavily, so lack of iron can be an issue. I don’t seem to handle salt well so if I sweat or cry or bleed a lot I need to be careful with putting salt in or I wilt. But there are still also days when I have little or no energy and I don’t know why.
One of the things I’ve not had the energy for is fighting for a diagnosis – being self employed I can generally get away with the dodgy energy levels. I don’t want to go onto welfare, and I know there’s not much support available. So, I live with it.
However, one of the consequences of covid seems to be long term fatigue. Lots of people are now suffering with this, and it seems that fatigue is being taken more seriously. The idea that for some people chronic fatigue may be a consequence of having been ill is getting some traction. It is my hope that this will lead to the better treatment of people who were already struggling with exhaustion and poor energy.
The thing is, that if you have no formal diagnosis it can be very hard getting help, or even sympathy. It is difficult to persuade people to take you seriously, sometimes, when you don’t have a diagnosis. Especially around fatigue, where how badly it affects you will vary from day to day, and people may assume you are just being lazy, or uncooperative, or making a fuss. When I was a child, no one was considering hypermobility as a serious condition in need of care. I was still hypermobile. No one ever gave my grandmother a fibromyalgia diagnosis because that didn’t exist when she was struggling with pain and restricted mobility.
Having a condition that is not considered to exist is an exhausting, miserable, stressful place to be. Think about the women who endured post natal depression before anyone decided that was a real thing. Or the countless soldiers with shell shock before PTSD was an available diagnosis. I hope what’s going on now around chronic fatigue will help more people be kinder around these issues, and help more people recognise that just because there’s not much insight into a body problem, it doesn’t mean there is no problem.