I’ve heard just about every insult and misconception imaginable in respect of my illnesses over the last two decades. From my biological dad’s “there are people in the world worse off than you, pull yourself together” comment when I’d been told I was critically ill with M.E. and might not make it through the night, to the common “M.E…..hmmm, isn’t that where you feel tired a lot?” (if only!) to the “have you not tried some painkillers?” in respect of my EDS (bugger, why didn’t I think of that?!). Trust me when I say these remarks still rankle even if you ignore the fact that people you barely know feel they have a right to question you about your private life, make judgements about your situation or give medical advice when they have zero qualifications and know nothing about the diseases from which you suffer.
I do now take every opportunity, however, to set the record straight. I’ve given up my right to privacy to discuss with total strangers how my body fails me and the repercussions this has on my daily life. I admit to using shock tactics “yeah, I went to bed last night and woke up with a dislocated jaw” alongside graphic details of my bowel habits or how often I vomit, which usually shuts them up but at least they slink off having learned something, even if that something is to mind their own sodding business 😉
I was at my Camera Club last week. My back was screaming and as I apologised to the lady sitting next to me for squirming in my seat she said “is there nothing they can do?” which was my cue to explain that EDS is a genetic disease and there is no cure. “What about pain relief?” was her next question, which then gave me the opportunity to discuss mast cell disease and my allergies to all things chemical. The poor women probably wished she’d never asked, but having done so at least she came away from the conversation with a smidgen of information about my illnesses and empathy for my situation.
On a completely different topic, my lovely dog walker this morning was telling me about a friend of her daughter’s who hasn’t been round for a while because she’s “not well”. I asked what was wrong and my friend said “she’s fatigued, has joint pain, is sleeping a lot and generally feels unwell which, let’s face it, is called being a teenager! All the blood tests she’s had done have come back negative so there can’t be much wrong with her” which was my cue to tell her that M.E. is the biggest cause of long-term absence in school children and the problem with diagnosis is that there isn’t a simple test which can confirm it. My friend had no idea children were affected by M.E. and you could tell felt very sheepish that maybe there actually was something wrong with this teenager and she wasn’t just being dramatic.
People are naturally curious about difference. If they see someone using crutches they’ll often ask “what happened?” expecting you to say you’ve broken your leg so they can sympathise, then are mortified to learn you have a lifelong disease. If it’s a genuine question I’ll try to put them at their ease while at the same time explaining in a couple of sentences that I was born with a genetic disease called Ehlers-Danlos Syndrome which affects my collagen, which means I can have lots of joint injuries. They’re then usually embarrassed as all hell for asking but they’ve still learned something and that’s my goal.
Of course, not everyone is asking out of kindly curiosity. Some people are dismissive, rude and downright nasty. A young lad shouted out “lazy bitch!” through a car window at me a couple of years ago as he drove past me on my mobility scooter walking my dog. I’ve often been told to “get more sleep”, “exercise more”, “find the love of a good man” or “have a tipple” (if only!) and my stock retort has become “sadly I don’t think a glass of wine or an extra twenty winks is going to cure my crippling genetic disease” at which point they usually have the decency to blush. And if they’re being really rude my retort is “I was born this way. Were you born a rude, ignorant twat lacking in social skills or have you had to work at it?” 😀
On the whole, though, most people don’t realize they’re being insensitive when asking questions about my health and/or lifestyle. When I was at my Camera club committee meeting recently we were discussing who should answer queries made via the Website. As webmaster I assumed it would be me, but the Treasurer said in a pitying voice “but what about when you’re ill?” which really put my back up. For a start I’m ill every fucking day of my life and for seconds if I couldn’t do the job I wouldn’t have volunteered for it. I’m sure she thought she was being considerate but honestly it just felt patronising and like I was being singled out as inadequate. If I need help I’m a grown woman perfectly capable of asking for it but until I do it feels rude for someone to make assumptions about my abilities.
I’ve made a conscious decision to stop being embarrassed about being sick and to stand up for myself. I wrote a Facebook post about endometriosis recently, admitting that it hurts to pee and poop in front of 100 people many of whom are male and acquaintances rather than proper friends. But, y’know, more than half the population bleed from their vaginas every month and I’m sick to death of acting like it doesn’t happen or like it’s some kind of shameful secret. It’s as normal as eating and breathing and it’s about time women owned it.
I’ve done nothing to cause the situation with my health yet often in the past I’ve been made to feel by society that I’m somehow culpable. Bad. Weak. Less than. That I should be ashamed of not being healthy and am a burden, a drain on the nation’s resources. I’m none of those things. In fact I know non-sick people who receive more health care than me (pregnant women/new mothers for example) and I’d love to see how some of those who look down on me would fare living alone for over two decades floored by illness, lacking in resources, help and care, battling the medical profession at every turn, taking on a rescue dog and then looking after two sick, elderly parents. I’d wager I’m more resilient, resourceful, hard working, determined and stronger than most of the healthy people I know. And let’s not forget that despite my struggles, limitations and shitty health I’m one of the most talented photographers to attend my Camera Club in its 30 year history – stick that in your pipe and smoke it 😀
There is a strong perception that the chronically ill are weak, vulnerable, needy souls who have nothing much to offer. The truth is my chronically ill friends are the strongest, most selfless, determined, creative, talented people I’ve ever had the priviledge to know. Be proud.