Monday, 23 March 2015

"You Don't Look Sick"

Hello again!
I am finally back and ready to resume normal transmission. It's been a bit of an intense month for several reasons. 

The first and most difficult of these has been the loss of one of my managers (when I was still working) and role-model, Nicky Boardman. 
He had been suffering from a particularly nasty type of cancer for the last couple of years and began chronicling his battle in the amazing blog Too Upbeat for Cancer. Unfortunately, cancer finally got the upper hand and he passed away not long ago.
He has not only been a major inspiration to me (this blog is pretty heavily influenced by his writing), but he was incredibly supportive when I got sick, despite his own far worse issues, and taught me how to stand firm (and laugh) in the face of adversity.
His conduct during illness and hardship remains what I'll always strive to emulate.
If you haven't read his blog, then I'd really, really recommend it.

It’s also now officially six months since I will was well enough to leave the house. 
I’d be lying if I said I wasn't having trouble dealing with that; with this kind of thing milestones feel more like millstones. But I’m hoping the return of sunshine will make things a bit easier on me, so that I can build myself up a bit more.

On a slightly happier note, in the realms of ME/CFS there's been big news that scientists have discovered that the illness that plagues over 250,000 people in the UK alone is, in fact, real!! Gasp!
As ridiculous as that may sound, there's been a lot of stigma around ME/CFS in the past so physical proof that it's not just psychological is pretty awesome. 
There's still a long way to go though.
Only last week my mum came back to me with a story about someone she met, whose brother sounds to me like he's got classic ME/CFS symptoms. When they presented that as a possibility to their doctor, he was told "you don't want to go down that route".
I'm pretty sure none of us would go down this route if we had a choice, mate. We'd much prefer something we could just take a pill for so we could get on with our lives. Unfortunately, that's not really how diseases work.
If that lady's brother reads this, firstly I hope you don't mind me mentioning the story (let me know if you do and I'll take this bit out), but secondly, and more importantly, go to another doctor or don't take no for an answer. If he's not willing to put his own prejudices aside to help you figure out what's wrong with you, then he's not a very good doctor and you shouldn't be trusting him with your health.

And, finally, there's also been this awesome open letter that this blogger wrote about people judging her while she struggles with her invisible illness. Good on you girl.

This leads me nicely round to my own experiences with The Public vs My Invisible Illness in the days when I left the house.
As you may remember, all those weeks ago I talked about how the balancing act of dealing with an illness (and not looking ill) can make things hard for people to understand.
This is especially true of strangers and can make things extremely difficult. It depends how I feel on the day (and how much of an obstacle it causes) as to how much this affects me.
There are days when it’s frustrating and you just wish people wouldn’t judge you so much, but, given that I have a mischievous streak a mile wide, most of the time I quite enjoyed watching people try to work out why I was using a disabled parking space as I sauntered into Tesco. 
They wouldn’t see what it’d cost me in energy later, but you’ve got to get your kicks where you can.

However, one thing that never fails to get my goat is the group of people I like to call the “You don’t look sick”ers. 
Now lots of people use this sentence (or ones like it), because, well… I don’t look sick, and that’s fine. It can be a little frustrating as a reply to me saying that I don't feel well (because me looking okay doesn't make me feel better, it just makes the balancing act all the more invisible), but on the whole I know those people are just trying to look for a silver lining.
But never has the old adage “it’s not what you say, it’s how you say it” been more apt.
Because when this sentence is said by the YDLSers it doesn’t come across as friendly concern. Instead it always has a slight undertone of disbelief that immediately makes you feel the need to defend yourself.
It’s something that is usually said by strangers, and it’s inevitably accompanied by a disapproving look of assessment, as if only your immediate death will convince them that you’re not participating in flagrant benefit fraud.
If you’re unsure who I mean, these are the people that tut if I use a disabled loo when I'm not using a wheelchair. Or when I am using a wheelchair but then get up for something, stare accusingly at me.

I don’t get it as much now, of course, because I don’t go out anywhere, but when I did I always dreaded it. 
For a long time I just used makeup to cover any minor signs (mostly dark circles, that range, depending how tired I am, from lavender coloured smudges all the way to Full Panda) in an effort to avoid the entire thing all together. But then I’d need to sit down in a shop or have the music turned down in a cafe and it’d come up again.
Unfortunately makeup just made the YDLSers even more suspicious, so now I only wear it to cheer myself up when I’m not going to see anyone.
(To be fair to them I’m an artist, and I’ve had bad skin since I was 13. I am very, very good at using makeup to make myself appear human. Or feline. Or like Benedict Cumberbatch. There are photos to prove it.)
But even when I go Full panda (which usually signals an energy crash) I just look hungover. 
An old lady once took pity on me during an energy crash on an outing and asked, in that particular tone that fondly pities the foolishness of the young, if I’d had a late night.
When I replied I was ill she leapt back as if I’d informed her of my personal involvement in the reintroduction of the bubonic plague. She was surprisingly nimble for an old girl.

By far the biggest problem that arises once you realise YDLSers exist and you begin to worry they’re lurking in every corner is this:
Explaining yourself to people, especially YDLSers, is really tiring, so you tend to start to try and alter your behaviour to avoid confrontation. 
It doesn't sound like a bad thing, but considering that I’m ill, it’s way more effort, and I shouldn’t really have to do it in the first place, it’s not really a good thing either.

For example, in the heady days of forty percent-hood, when I would travel up to London to see my friends, I would be so worried about people not being willing to give me a seat on the tube that I would carry a folding stool around with me. This was a bad move for several reasons:

  1. Carrying around a stool just means you use your energy up quicker… to carry around a stool.
  2. Everyone stares at you if you bring your own chair on the underground.
  3. Balancing on a tiny, rickety, three-legged stool in a moving carriage doesn’t actually allow you to rest, it mostly just changes the muscles you’re using while you try to stop yourself falling directly into someones crotch.
  4. Sitting on said stool puts your head at just the right level to allow it to collide repeatedly with grumpy commuter’s elbows. Who, as a rule, do not apologise for jabbing you in the temple.

I’ve got to say though, I do think I missed a trick by not taking the opportunity to set myself up directly in front of someone sat on a normal tube seat just to mess with them. I would have been directly at their eye level. 
I wonder how long it would’ve taken them to move.

When I finally get out of the house again though, I'm going to make a concerted effort to not let the YDLSers bother even on my most sensitive days.
If dealing with them has taught me anything, it's that it's their problem, not mine, and I don't owe an explanation to anyone. Plus, most of the time, it's way more fun not to give one.


  1. There is so much mischief that you could wreak! Although, in all seriousness, what we need is for disability to be visible in society, so that people can be exposed to those with different needs and therefore understand them and cultivate a little bit more compassion. It's hard because, as a person with an illness or disability, it's not your responsibility to educate people, but there is a need to educate people about disability. I wish I had the answer... In the mean time, I suggest strategic us of gory SFX make-up! Lol!

  2. I was nodding my head all the way through reading this. Hats off to you for the stool idea!!! Genius