“Yeah, it’s probably fibromyalgia.”

Oh to hear the words that mean you finally have a diagnosis! Or rather, to be prodded for 15 minutes while you wear a hospital gown and have the rheumatologist say to you “yeah, it’s probably fibromyalgia”. Yey? I suppose? Well, I’m taking that as an official diagnosis as it’s probably the best I’m gonna get.

She seemed to think that fibro, CFS and M.E. were the same thing, which they’re clearly not. I’m not sleeping, I’m female, I’m overweight and I have pain. So, painkillers, sleep aid, get more exercise. Fibromyalgia as a stress/weight/being a female syndrome. Oh, also a nice leaflet from Arthritis UK that has this nice picture of some nice people meditating on the cover. Yoga and meditation for a cure. Yeah, no. I’m no expert, but I’ve read enough to know it’s not a “lose weight, take these pills and have a nice life” syndrome. It’s so much more than that. But there’s no funding for research, no-one wanting to look into fibromyalgia because it’s something that overweight women get so it’s not worth it. Eat better, exercise more, take pain pills. Repeat ad nauseam. Your illness is self-inflicted.

Bullshit.

The unspoken words of “yeah it’s probably fibromyalgia” are “hey, at least it’s not something serious! At least you don’t have cancer, or arthritis, or HIV! At least you don’t have something we can actually see! You’ve just got something we have to take your word for, so y’know, it’s not serious”. It speaks volumes about how women with chronic illnesses are treated. Women aren’t seen as having high priority jobs – we’re all mums, or wives, or dinner ladies or nursery nurses or cleaners. Just pop some pain pills and you’ll be fine. You’ll get through. We’re not seen as executives, as researchers and CEOs and people who undertake “important work”.

A quote from the Kickstarter-funded film about M.E. titled “Canary in a Coal Mine”:

“There’s $16 million in Male Pattern Baldness. And we get $3 million bucks going for Chronic Fatigue Syndrome.”

Don’t tell me this isn’t a gender issue, because it is. Remedies for hair loss and research into Viagra get plenty of funding. Diseases that effect mostly women and can ruin their lives? Get very little. It is very much a gender issue. And the people who have to do the research are the women who are in pain, are exhausted and are looking for answers.

So my next step? Is to research. Research everything I can. Read everything I can and learn to understand it all because this is my health. No-one wants to become an expert in my health, so I’m going to have to. Those of us with chronic illnesses have to become our own specialists, because no-one else wants to.

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7 Comments on ““Yeah, it’s probably fibromyalgia.””

  1. When I was diagnosed with ME/CFS I was told by the doctor “I have some good news and some medium news”. His good news was that I wasn’t about to drop dead and the medium news was ME/CFS. That diagnosis was almost two years ago. The best advice I got was “don’t chase the miracles”. Research, inform, educate.. educating those around you will be fun! My friends are now experts in ME/CFS!! Of course there will always be people who wont believe in such illnesses as ME/CFS or FM but I walk away from those! Best of luck on your path, enjoy it. I know that sounds weird, but figure out what you can and cant do and work within those limits… sorry I’m rambling.. my intention was to say best of luck.. hope I didn’t come across as conceited cos I’m not, honest! Or a whacko, cos I’m not that either!

    • Emsy says:

      I figure the best way to stop myself going completely bananas is just to become an expert on fibromyalgia. So that I can find out about what research is happening, what treatments people are looking into…that way I guess I’ll feel like I’m doing as much as I can.

  2. […] “Yeah, it’s probably fibromyalgia.” → […]

  3. My GP advised me early on to become an expert in my condition as many of the professionals I’d have to deal with wouldn’t know much about it and wouldn’t have the time or inclination to learn for themselves. It is one of the best bits of advice I have ever been given.

  4. […] last time I saw a specialist regarding my chronic illness was back in February. I saw a rheumatologist who diagnosed me with fibromyalgia. Which she then told me was the same condition as Chronic Fatigue Syndrome. (hint: it’s […]


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