On Fibromyalgia

CW: Discussion of chronic illness.

The first doctor said “it’s a legitimate illness, and it can be very painful”. In some ways, that gave me hope- my pain was validated. The second doctor said “well I don’t really believe in that”. I let him treat me for a year and I think his disbelief did just as much damage as the illness itself. The third doctor said “well it’s just a diagnosis of elimination, it doesn’t mean very much”. By that time, I was immune to the scepticism. It had been three years and I’d heard this a lot.

Fibromyalgia is a condition characterised by widespread pain, extreme fatigue and sleep problems. Some people report having a kind of ‘foggy’ brain, where they feel they can’t remember simple things they used to know. There is no known cause or cure. Sometimes it is attributed to a combination of genetic and environmental factors, especially a physical or mental trauma. Some think it is a problem with the way the brain processes pain, in that all pain is being amplified to unprecedented levels. Others think it’s ‘all in the brain’ (as in our brains are making it up), but I reject this- all pain comes from the brain.

None of this is actually very helpful to someone living with possible fibromyalgia pain. There is really no medicine to help; Panadol and Nurofen are essentially useless (in my experience) and doctors will rarely prescribe anything stronger. This is primarily because stronger drugs are not thought to make any difference to the pain anyway. But it is the case also that too many people believe fibromyalgia sufferers have just made up a bunch of symptoms in order to get access to drugs.

Trust me, it wouldn’t be worth it. I’ve read horror stories online of people in screaming in pain only to be denied proper care in hospital. I’ve heard hundreds of people talk about the years it took to get a diagnosis and the amount of bureaucratic disbelief they had to push against. I personally spent hours of my time with doctors, having MRIs and going over things time again before I was told it was probably fibromyalgia.

Fibromyalgia disproportionately affects women, and I have absolutely no doubt in my mind that this alone has denied thousands of people proper treatment and support. It is a societal shame that women presenting with agonising pain are not believed, are accused of being a drug addict or have all their symptoms chalked down to depression. My hairdresser opened up to me about his struggle with fibromyalgia and it felt like he was talking about a different illness. He was supported, his doctors nipped it in the bud through telling him exactly what treatments (yoga and diet change) would work for him. They even helped him get a nutritionist. And then there was me, sitting there, thinking about how I couldn’t even get my doctor to believe in holistic practices. In fact, I couldn’t even get him to believe me.

People with fibromyalgia are angry. Go on to any online forum and you’ll find people who’ve been trodden on by the system. They are fighting these battles every day, and worst of all, they’re in severe pain during all of it.  It’s no wonder the rates of people with fibromyalgia who don’t believe it’s actually a real condition are still pretty high.

For a long time- too long- I have been one of those people. My relationship with fibromyalgia is fraught at best. I’ve been conditioned by the scepticism of those around me to be a sceptic myself. But where has that left me? The word is so hard for me, I don’t even say it. I can’t remember the last time I said to someone “I have fibromyalgia”. Mostly I say “I have chronic pain”. Often I just say “I’m fine.” I have lied to a lot of people about the level of pain I’m in. And who am I hurting? Just myself. The controversy and vitriol directed at fibromyalgia is denying my pain, denying who I am at this moment.

The goal is then to be myself, start making a fuss and start getting people to listen. But we as a whole need to change the way we talk about pain. Change the way we listen to women in pain with no obvious physical trauma. Because I can promise you, if someone tells you they have fibromyalgia, they don’t want your sympathy, your opinion or your drugs- they want you to say “I believe you”.