This week is M.E. Awareness Week and Action for M.E. asked me to write a post as part of their Don’t Ignore M.E. campaign. This M.E. Awareness Month, taking place throughout May, they’re concentrating on the social isolation people with M.E./CFS face.
Today is M.E. Awareness Day, in the middle of M.E. Awareness Week, in the middle of M.E. Awareness Month.
I know that sounds excessive, but there’s just a lot that people need to be made aware of when it comes to M.E.
Explaining the symptoms of M.E. can be enough a challenge, but for me, the symptoms often take a backseat to the impact having M.E. has had on the rest of my life. Work, money, domestic tasks, medical appointments, mental health, the tangled web of our social security system: these secondary symptoms can seem more overwhelming than the actual illness.
This week, Action for M.E. is using its Don’t Ignore M.E. campaign to highlight one of the biggest, and most often ignored, by-products of M.E.: social isolation.
My body clock is stuck on 2:37am the night before an essay is due.
I’m playing Super Mario World, but I only ever have one life and also Yoshi keeps dead legging me.
I’m trying to run the egg and spoon race but am still in my sack from the sack race.
When other people wonder when to have a sit down during a day out, I wonder when I should have a day out during my sit down.
I am riding the Tour de France on a stationery bicycle.
It’s not just that my batteries have run down but, much like my laptop in the academic year 2013/2014, I can only run on mains power and my WiFi connection is laughable.
When you go upstairs, they’re stairs. When I go upstairs, they’re the travelator from the end of Gladiators and Wolf is trying to beat me with a pugil stick.
My energy levels have gone straight to video.
Bernie Ecclestone has mandated that I must make a pit stop on every lap. This rule does not apply to any other driver.
Sorry, we are unable to reach the Netflix service. Please try again later or visit www.netflix.com
It’s the opposite of the concept of “pre-drinking” so instead of drinking before I go out, I feel like I have a hangover before I go out and also I don’t go out.
Everything has an equal and opposite reaction, except anything I do which has a grossly unequal reaction and can I sit down please?
I can only boot in safe mode.
I must view life from behind the false mirror of a police interrogation room and when I tap on the glass and try to explain that to the person on the other side, they can only see themselves and say “Yes, I get tired sometimes too.”
I have taken the last two years off to work on my night cheese.
It was certainly down in my calendar as the highlight of my year, but for those not aware, last night was MTV’s EMAs, which this year was co-hosted by the actor Ruby Rose, of the Orange Is The New Black stable. Rose, who had injured her leg during rehearsals, was not only wearing full red-carpet get-up but walked said carpet with the use of a walking stick.
And so, as is necessary when an individual leaves their home wearing clothes, an article appeared on Buzzfeed to alert us all to the fact. Kimberley Dadds, UK celebrity editor for Buzzfeed, offered us this in no way unacceptable or ableist assessment of Rose’s appearance and apparatus:
“Only Ruby could pull off looking this hot while needing a walking aid.”
I try to be calm and dismantle this with logic and patience and conciliation but I can’t because of the undyingly bright light of fury blasting out of my eyes. This is such a monumentally stupid and offensive thing to write. It makes my integral internal organs hum with anger. I have had to prise the Caps Lock key from my keyboard lest I never cease to use it.
How can I put this simply?
Alright, how can I put this simply, without expletives?
That is not correct.
Ruby Rose is hot AND needs a walking aid. There is no connection between those two concepts. Pick another conjunction.
Disability is not a negative. Sure, in many ways it is. In the navigating a world not designed for you way. In the being trapped in a punitive benefits system way. In the having to read these kind of lazy assumptions about you in Buzzfeed articles way.
But in terms of desirability? Disability, visible or invisible, is a big neutral. Everyone is hot enough to pull off walking with a stick just as everyone is hot enough to cross the road or read the Radio Times or eat jam because it has no bearing whatsoever on whether people might want to achieve congress with you or not.
Being too ill to leave the house a lot of the time makes it hard enough to meet people without having to factor in when I might do the grand reveal of my disability, pulling my cane from a bag like Mary Poppins with a hatstand. Sentiments like Ms Dadds’ only perpetuate the idea that disability and assistive devices are a prime addition to the “cons” list of dating me.
On a related note, it’s little wonder that people with disabilities are written off as hideous little trolls that you must in no way fancy or, heaven forfend, have sex with when most assistive devices seem precision engineered to be as unattractive as possible. Canes are designed to cater exclusively to two groups of people: Extras On Casualty and Old Women From The Past. That is it. I choose my clothes, my haircut, my make-up, my shoes, my bag to communicate things about me. Most walking sticks I am able to buy communicate that I inherited it from a medical supplies company with an unsavoury obsession with florals. There is a gap in the market for assistive devices designed for their appearance as much as their practicality: somebody fill that gap.
It is not shallow or frivolous to care about this. I was angry when a ticket inspector kept asking me if I understood him and looking at my stick as though it were the international symbol for stupidity. I am angry at the disproportionate number of disabled people hit by the Bedroom Tax. I am angry at the implication that my disability makes me unwantable. It is just another set of assumptions about disabled people that knock us down another rung from everyone else.
Dadds’ article has been edited to remove this sentence. There’s no reference to that fact on the page. No apology. No acknowledgement that it possibly isn’t a good way to think about people. If an actor’s temporary disability is worthy of comment, then so is our response to it. People with disabilities are too often invisible in the media: our objection to that shouldn’t be as well.
I was asked by Action for M.E.to write a post as part of their Hidden Faces of M.E. campaign highlighting the difficulties sufferers have in explaining the severity of their condition. I’ve written about how it’s my good days that hide me the most.
“So you get very tired, right?”
“Yes. But it’s not just tired, like ‘I need to sleep’, it’s tired like ‘I have the flu and I played a rough game of five-a-side while I slept. And, like, uh, I have real difficulty thinking straight. So if you were to ask me a question, I wouldn’t be able to answer you.”
“Because you don’t know the answer or because you can’t find the words?”
“Uh, well, both. Depending on how tired I am.”
“But you don’t have pain right? Because that’s fibromy-whatever-it-is.”
“Myalgia. And when I’m really bad, I do get really painful limbs and a sore throat.”
“Oh ok. But you look so well!”
Since I got sick over a year and a half ago, one of my most challenging symptoms has been a chronic difficulty in making clear what living with M.E./CFS is like. The perception that I am just sleepy (that’s a dwarf) or poised to fall asleep at any time (that’s narcolepsy) or just plain lazy (that’s just plain rude) can be as much of a difficulty as the very real physical symptoms I face.
For the first few months I was ill, I had what I now view as severe M.E., though it took me many more months to pin down a diagnosis. Mumbling my way through conversations, I spent much of time at least in bed, if not asleep, as my body desperately tried to refuel batteries that just didn’t hold a charge. During this time, I was hidden away from the world, from my friends, but most importantly, from the person I really am. When I eventually managed to put on my trademark thick arch of black eyeliner, the shock of recognition on my mum’s face made it clear she had only been living with a ghost of her daughter for the preceding months.
Through a strict routine of resting and planning and pacing, I am now living with moderate M.E.. I can get dressed, hold conversations and the application of make-up is no longer a notable event. But, though this is a great step forward in terms of health, it’s where the real hiding has begun.
I describe myself as housebound, but I leave the house. When I’m in a good patch and I stay home and I take my hour of rest each morning and afternoon and I stay in my pyjamas and don’t wash my hair, I can muster up enough energy to potter around as a functioning human. I can watch television. I can make meals. If I’m happy to add extra resting in, I can do some writing or bake a cake.
But I have never aspired to be only functioning. I don’t want to be Rapunzel, locked away from the world. When I go out, it’s my illness I lock away. I put on clothes that aren’t designed for sleeping in. I paint on eyeliner. I plan when I will rest the next day, and the next, to compensate. I leave the house.
When you spend so much time shambling around in worn-out Hogwarts pyjamas, with unwashed hair, and dark grey smudges of tiredness under your eyes, the opportunity and to leave the house and not look like a little duvet goblin is hard to resist. When I go out, if I’m not clutching my walking stick – collapsible, and thus more easily hidden – you would have no idea how ill I am. You cannot tell by looking that I consider the ease of preparing a meal sitting down a deal-breaking factor in whether I eat it.
Good days, bad days
When my friends see me, out of the house, looking as I always did, laughing and talking like the Rosie they’ve always known, it can be easy for them to assume that I am better and hard to comprehend that this is not a cold I’m slowly but surely recovering from. It’s a long, difficult road. I have good patches, I have bad patches. You can’t see either of them coming.
If asked how I am, I don’t like to explain how hard my day-to-day symptoms can be. I don’t like to bring people down. It’s a long-standing joke, but when asked how we are, we’re programmed to say “Well, thanks!” But I’m not well. I’ve recalibrated my programming to spit out the automated reply “I’ve been better, but I’m getting there.” But getting where? We see illness and recovery as having a clear progression. You feel ill, you get diagnosed, you take your medicine, you get better. Chronic illness holds no truck with this pattern and I don’t like to disappoint people by telling them that, despite the brave face I’ve managed to put on, I have taken a diversion from the expected road to recovery.
The Rosie who posts to my Twitter doesn’t seem that ill. You find there a devoted knitter, an avid film-watcher, a writer and a baker and a friend. She doesn’t stop to tell you when it’s nap time twice a day, or how wretched she feels when she wakes up or how much pain she’s in. There are many reasons why: it’s depressing, it’s tedious, it’s not exactly the person she wanted to be in her mid-twenties. But she is and I am. This is what living with M.E. is like, no matter what you think you see. I may be hidden away from sight but I will not be hiding any longer.
You can find out more about Action for M.E. and their Hidden Faces campaign by visiting their website. This is the first in an ongoing series about living with a chronic illness – if you’d like to read more, you can subscribe or find me on Twitter.