I’m going to set up a fibromyalgia support group. Ta da! That sounds quite grand doesn’t it? I suppose a better way of saying it is, I’m thinking of trying to set up a fibromyalgia support group. More accurate.
I’ve been a fibromyalgia sufferer for almost five years, and I’ve had very little support. My close friends and family have been amazing, so I’m very lucky in that respect, and once in those five years I found a really excellent GP. But, other than that, I’ve had nothing. In fact the highlights of my care and support (or low-lights, if you will) are as follows:
- A truly awful Consultant at the Pain Clinic said to me, “Well, you don’t really look like you’re doing too badly. I’ve seen fibromyalgia patients in tears, no make up, they come in still in their pyjamas. Really, it looks like you’re doing fine.” No one will ever know how much this angered me. Apparently my decision to put on clothes before I leave the house means I will not be taken seriously at the hospital.
- A really lovely Physiotherapist said to me, “I’m not really sure why you’ve been referred to me because, there’s not really anything I can do.” I know I’m not the first to hear this but wow, you have no idea how totally hopeless this makes someone with fibromyalgia feel.
- A slightly crazy GP put me on valium, and when I told him the pain was so bad I couldn’t live my twenty-something year old lifestyle and my dosage was so high I could barely function he increased it and said, “Well you’re young, there are worse things to be a bit spaced out at gigs or festivals.” Um…I beg to differ.
- A hideous Occupational Health Therapist said to me, “Oh yes, fibromyalgia, that’s really the in vogue condition isn’t it? In the 90s it was all about ME, but now everyone wants fibromyalgia.” I had no words. I still have no words.
And so it goes on. However, I’ve digressed. The point of this post wasn’t to talk about the medical support, or lack thereof, because rightly or wrongly I can excuse some of the behaviour. Some of it. Fibromyalgia doesn’t have the research and pathology behind it that so many other conditions do, and our medics don’t really know what they’re dealing with and so, to a certain degree, I sympathise. However, that doesn’t make it any easier to deal with. A friend of mine has Multiple Sclerosis and on the day of her diagnosis her consultant booked her an appointment with the MS Nurse to talk through her treatment options and discuss the impact on her life. Imagine! As horrendous as it sounds, I found myself feeling jealous that I didn’t have a ‘proper’ illness so that people would offer me support like that.
Anyway, if the point of this post wasn’t to discuss the lack of medical support, what was the point? It was to discuss the support given, or not given, in the fibromyalgia community. I have total respect for the fibromyalgia charities, online communities and forums that exist to allow fibro patients to share their thoughts and experiences, but oh holy moly (great phrase, going to use it more) the discussion threads are just horrific. They are a breeding ground for people to whine about their condition and, in my humble opinion, not in a healthy way. Most frequent comment I see is, “Why did this have to happen to me?” And I know we all need a place to offload or rant or moan, and I can see why a forum with other sufferers may feel like the safest place to do that, but I don’t read that and feel stronger and empowered; I feel pissed off. I want to find a group of like-minded people who want to share experiences, laugh, rant and recommend tips. I want it to be positive and proactive, and I want to come away from it feeling good, and to feel like I’ve helped others to feel good. Do I want too much? Perhaps, but I’d like to think not.
The last time I looked to join a support group my GP recommended one. He said, “they tend to get pretty down, I think you should go and add some energy.” Well there’s an invitation I can’t refuse. Oh, wait, yes I can. And I did. Maybe I shouldn’t have gone, but at the time I felt like I was being wheeled out for their benefit, not mine, and I was feeling selfish. Who was going to help me? So I looked online for local support groups. Interestingly, all the support groups I found met during a working day, normally “10.30am in the local community centre for tea and biscuits”. I’m looking for “7pm in the local pub for vodka and pistachio nuts.” Is that wrong?
So, I have no idea how I’m going to go about this but I’ve decided to be proactive and try and set up some kind of London support group. Here’s my wishlist:
- It will be attended by people who have an ‘invisible disability’, a condition that affects their physical mobility but that is not obvious to a passing stranger, but it’s not limited at fibromyalgia
- The people in the group will be fairly proactive and positive, if not physically then mentally. For me this largely comes through keeping myself in full time work, but other ways might be through doing a hobby, raising a child, writing a blog etc.
- Oh, it turns out my wishlist isn’t that long. I don’t think I have a third request.
Am I asking too much? Are other fibromyalgia sufferers interested in this kind of thing? I feel quite nervous writing this post, more so than I did listing my fears and loves for all to see. I feel like a lonely kid in a school playground begging for friends, and this feeling does not sit well with me. But, here goes. If you’re keen to get involved, or know of something like this that already exists in London, then please let me know. You can use the comments section below, or you can tweet or facebook or privately message me. And if anyone has a clue how to promote this thing, I’d welcome your thoughts too.
So there we go, come forward and be my fibromyalgia friend. Please.