I think I have mentioned previously on here that I don’t read up on Fibromyalgia. When a new symptom appears, I make a quick search online to see if it is connected to Fibro. When I was first diagnosed I made the mistake of reading about it, but I very soon recognised the error of my ways. For many people, learning about their condition is an important and useful part of living with it. However, I find that I cope better if I don’t know. I’m the same when it comes to having any treatments. In fact, I am so bad that a consultant once operated on me, rather than carrying out the lesser [and more appropriate] treatment, because he knew I wouldn’t be able to cope with being awake and aware of what was going on! His was exactly the right course of action. I like to know the details after the event, not before.
Anyway, when I was diagnosed with Fibro, as well as reading about it, I joined a few support groups on Facebook. One year on, I am thinking of leaving those that I haven’t already ceased to be part of. Let me say at this point that, in general, I think support groups can be a marvellous thing but, for me, when it comes to Fibro, they are not really helping. Allow me to explain why.
You will have noticed that I don’t tend to have much pain associated with my Fibro. I have several other symptoms that cause difficulties for me, but pain is not one of them. However, pain is what most people equate with Fibro. Usually, if I tell someone I have Fibro, if they have any knowledge at all about the condition, they make the immediate assumption that I suffer a lot of pain. This seems to hold true within support groups, also. It feels to me, that many people with Fibro, will not believe that someone has Fibro if they don’t have the pain associated with it. It’s almost as though they are wishing the pain upon people! Not only that, but often, people who do have pain can come across as quite aggressive in the way that they speak. Some of the posts I have read in a couple of the Facebook groups are quite unpleasant. Now, I know that being in pain can cause anyone to be short-tempered, but it doesn’t excuse the nasty comments that I have seen in what is supposed to be a support group.
I have seen the phrase “Fibro Warrior” used to describe people living with Fibro. OK, be a warrior if you want to, but please remember that the ‘enemy’ is Fibromyalgia, not your fellow sufferers!
I know that I am not the only person who has noticed this phenomenon as within the last couple of weeks someone else mentioned it in a post that we were both responding to. Indeed, within just the past few days, I have seen a woman being verbally attacked by another member of a particular support group because she goes to work. The assumption of some people with Fibro seems to be that no-one with Fibro is able to work: they seem to forget that everyone’s experience of Fibromyalgia is different. That difference is not wrong, it’s just different.
As for the support groups, I haven’t yet made a definite decision about whether to stay or to leave. I shall probably just go with the status quo, for the time being.