Mental // Physical
It’s a popular trope to say that people, especially doctors, treat ‘physical’ illnesses differently than they do mental ones. We look at the vast array of medicines behind a chemist counter and imagine them being doled out like sweets to anyone with a back ache, or rashy butthole. If your only experiences of seeking medical help, or talking about your body online, are shall we say ‘the shallow end’ of the pool (having a virus, feeling achy after the gym, etc) then maybe you still believe this too. But for those of us who are grappling with complex health issues it is not quite so simple.
For over a decade I’ve had fibromyalgia. The more research I do on it the more I realise it’s not so much a condition as a word doctors give you so you don’t feel ignored. There’s no consensus about what fibromyalgia is, not even amongst those of us with a diagnosis. My fibro is a solid persistent ache, feeling like a sleeping spell hangs over me, and sometimes a strange burbling sensation in my brain like a fart where memories and words escape me and I feel ditzy and vague. Others talk about stiffness in their joints, but I am hypermobile. Some mention constant draining headaches, burning skin, sore gums, tinnitus, swelling hands. Not one of us has the same set of symptoms. The diagnosis we get isn’t made from a list in a book, but comes about by process of elimination: you don’t have diabetes, arthritis, or MS, so we guess you have fibro!
It took me five years to get someone to admit there was something wrong with me. During that time I was told to sleep more, sleep less, take cod liver oil, or maybe avoid all protein, some people told me exercise would help but couldn’t agree on what kind. After my diagnosis a partner told me Since it’s psychosomatic, you really just need to get out of bed when you’re in pain and you’ll stop feeling it! My GP told me to have a hot bath. I was referred to a pain clinic who kept asking if I had tried ‘mindfulness’?
The back and forths with doctors who kept discharging me from services as I seemed fine, went on for years. When I explained my condition to a friend who was angry with me for not being able to walk to her house one day, she sent me back a message saying she hadn’t heard of the condition, but on googling it saw that it was ‘all in my head’ so I should just get over it.
A lot of the time I try to be sympathetic to people who don’t understand fibromyalgia, because almost no one does. It might even turn out to be twenty different conditions that have been lumped together, and in the future we’ll look back on it like we do now on miasma and peurperal exhaustion. For a long time I sighed patiently, let people do their piece, then politely replied that I would think about their advice, before immediately changing the subject.
It was after I got diagnosed with breast cancer, that I realised people’s crap advice wasn’t limited to conditions they had never heard of. Apple cider vinegar shots, smoking weed, cutting out dairy/soy/wheat/sugar, and best of all ‘eating as many red peppers as you can’, were all touted to me as ways to cure my cancer. Even other patients told each other off for snacking on biscuits or taking the post chemotherapy drugs designed to keep you alive after your treatment obliterated your immune system.
At one point I went to talk to someone about some harassment I was receiving and while advising me on my legal rights, the woman I was consulting kept breaking her flow and saying things like“Have you stopped wearing aluminium deodorant?”. Each time it would take me a minute to realise that she was talking about my cancer, not my stalkers, and I would smile and nod, and wait for us to get back on track. Strangers stopped me to talk about a great herbal pill their friend was taking, offering to write down the name.
It’s three years since I had cancer and went through active treatment, and ten years since I finally got a diagnosis for my fibromyalgia. I’m older, if not wiser, and have a thick skin for people giving me medical advice based on the woman they chatted to in Whole Foods, and a thing they read in the paper. What most people don’t understand though is that it’s not the advice that’s the problem. We all want to hear something that will help us, and we all want to help other people, that’s a beautiful natural thing. It’s when you’re approached by someone who has no idea of the body you live in, the pain you exist shrouded in every minute of your waking day, and thinks they have a cure that simpleton you could never have dreamed of. Do you think that we chronically ill people haven’t tried drinking more water, going to yoga, wishing ourselves better, and eating more kale? Do you really think that you have some amazing knowledge that goes above and beyond not only the baffled medical professionals we interact with, but also the wealth of experience we have from living this reality?
What we need to do is look beyond physical health as being simply a broken leg or a runny nose, and beyond mental health as being a sad day, and see the multitudes of experience that exist within each one. And we need to learn to shut our damn mouths sometimes.
I am currently out of work due to my mental AND physical health, as you may have guessed. If you liked this short piece, please consider donating some money: paypal.me/sarcastathon