Maybe it’s because I’m having a really rough patch, or am hormonal and grumpy, but my Facebook feed is annoying the shit out of me lately. The Ehlers-Danlos community in particular seems to share nothing but upbeat, triumph-over-adversity posts which make me want to put my foot through my laptop screen. While it’s great that some sufferers run marathons, get degrees, hold tea parties and sky dive some of us are too sick, and the more severe end of the EDS spectrum is woefully under-represented. When we are mentioned it’s how, despite wheelchairs and feeding tubes, we’ve still managed to become famous actresses or sportspeople or done something amazing. My biggest triumph yesterday was actually getting out of bed, even though it didn’t happen until 1 o’clock in the afternoon and I was back in there, ill and exhausted, at 3 o’clock.
Then this morning there was the photo of the bald headed child who wanted a million likes because he “beat cancer”. No-one beats cancer. Nothing you do or don’t do has any bearing on whether you live or die. Caron Keating tried everything to beat cancer, even moving to the other side of the world, but she died anyway. Ditto Linda McCartney. And Lisa Lynch. And my three aunties. You either catch cancer early, it’s a treatable form of cancer and you have excellent care (not like my local hospital which is so bad it’s been in special measures for 3 years now) or you don’t. It’s a crapshoot and the rhetoric surrounding it has to stop, because it makes those who aren’t going to survive feel like they’ve somehow failed or not fought quite hard enough. Not wanted to live quite enough. Which is bollocks.
I find a lot of the positive posts are written by younger people. It’s much easier to focus on the happy clappy and zen when you’re not worried about money, don’t have to cook, or do laundry, or battle with the Benefits Agency or Social Services, or buy groceries, or arrange hospital appointments, or get the car serviced, or fix broken stair-lifts, or blow up your own wheelchair tyres………I wonder if their parents or partners are as permanently upbeat, or whether like me they just feel exhausted and overwhelmed by the relentless stress of looking after someone who is sick.
On the other hand, people who do nothing but moan also piss me off. We’ve had a very long winter this year in the north of England and everyone has understandably got fed up of the biting cold, lashing rain and permanently grey skies. This week summer has finally arrived and now everyone is moaning that it’s too hot, they can’t sleep, can’t work and they wish it would cool down. FFS quit whinging (I refer to healthy people here, not sick people who I know are often made worse by hot weather).
One charity which seems to have the balance between positive and negative right is the ME Association, particularly their Facebook page. I’ve been a member of the MEA for twenty years and it’s had its fair share of ups and downs. In the early years there was little mention of the severely affected and much criticism from us about this, and rightly so. In recent years the balance has changed and the spectrum of ME is much more widely represented, no doubt due to the fact that its chairman Neil Riley is more severely affected and writes some excellent editorials in the charity’s magazine.
We don’t all have the same illness experience. In the north of England healthcare is poor compared to the south, which has a huge bearing on how well your disease is managed. It would help if conferences, residentials and training events were held in the north (and by north I don’t mean Leeds), which they’re not and for which all the charities should be ashamed, but that’s a story for another day. We don’t all have wonderful parents or carers looking afer us. We don’t all have husbands or partners keeping us financially. And some of us have more than one disease to contend with. All sides and aspects of the disease spectrum should be represented and there needs to be more of a balance between the positive stories and the negative, between children’s experience and adults (particularly older adults who have had these diseases for decades and who we never hear from), between those receiving excellent health care and those receiving none. Only then will the full extent of living with these diseases be known.