Ehlers-Danlos Support UK

Being in pain, invisibly

Invisible pain: I've stopped wearing my wrist splints during the day as I'm worried about causing muscle wastage, my wrists are starting to look weird. But then everyone assumes I'm better, although my hands hurt much more without the splints. It's got me considering why I (we, people generally) want others to know we are in pain? What to we gain from it? Sympathy? I want people at work to know, I think I want their sympathy. Mostly I think I just want them to know that I'm in pain. That if I'm a bit slower, or vague it's due to the pain. But then I don't want different treatment, or do I? I'm not sure. I'd love to hear others views.

4 Replies

That's a really tough question.

I think that personally I want others to know that I'm in pain so that they understand when I walk slowly, or limp, and they don't make a fuss.

I don't like it when people constantly ask if I can do things, I'll tell them if I can't. But I do want people to understand when I say 'no' that I'm not being antisocial and it's noting against them, but sometimes I have to choose between things I want to do because I can't do as much as everyone else without huge consequences.

In short, I suppose I want people to know I'm in pain because I want them to understand why I make certain decisions. To know that I'm not being rude, but am just protecting my body. I don't want people to make a fuss or have lower expectations of me though.


It is a tough one. I suppose it's not so much sympathy but a hope that they may understand why we are unable to do certain things & why each day can be different for us. I don't want all the fuss & attention of "Do you think you can manage ....?" but at the same time I would appreciate they understanding & acceptance if I do advise them "I don't know that I can manage that at present".

It is bizarre how people react to us though, I stopped wearing splints because they caused other symptoms to flare up (I have secondary Raynauds) but because I stopped wearing them people instantly assume I'm 'on the mend'? If we have a certain amount of physio & then stop attending (dispite most physio/hydrotherapy only lasting 6wks) they again assume it's because we've 'improved'. A little understanding in the world would go a long way to maintaining our sanity.


I think I don't mind the 'do you think you can manage...' questions. That feels like someone's caring, taking a second to check I'm doing ok, making allowances without lowering expectations of me. At work especially I don't want people to have lower expectations of me!


So next step in these wonderings- now I'm using a crutch as one heel is very painful. I had an op a few weeks ago on the top of my foot, and needed crutches for a couple of weeks, but as this healed I realised the crutch really helps my heel pain. So now my pain is visible again and people offer to get me things and offer me chairs. It's weirdly nice. Before I would stand in pain, scanning the room for chairs all the time, deciding whether to go and sit by myself, or stand in pain with other people (at work). Now I sit, and others come to talk around me, and with me. I suppose, even if you tell someone you're in pain, one day, they assume you're not anymore the next day.


You may also like...