Action for M.E. | Hidden Faces of M.E.

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

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.

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11 thoughts on “Action for M.E. | Hidden Faces of M.E.

  1. Emily says:

    Thanks for writing this, Rosie. It’s really sad to read about young people with ME particularly, and how it steals lives and then on top of that people just don’t see the worst of it or even believe it. I can sense how you cope with it really well though, even though it’s a horrible situation to be in and it’s so hard. You sound like such a strong person. I really hope your health continues to improve even though it can be so slow. Hugs and best wishes, Emily x

    • Rosie says:
      mm

      Thank you so much Emily – I completely agree about it stealing lives. It took my old one, but I’ve forged a new, different one in the fires of adversity. Hugs to you too! R

  2. Aamna Choudhry says:

    Well done Rosie for doing this,. I’m sorry that your going through this, but people need to be aware of your condition. It’s an invisible illness and if can be cruel. Take each day as it comes and do what you can. Never be afraid to say “no”. I hope you get the support you need, and never be afraid to ask for help. I was diagnosed with Mayasenia Gravis in 2013 a so I know it can be tough. Keep strong girl, I remember your amazing energy from when you were a Christmas temp at Lush Brent cross. All the best Aamna xxx

    • Rosie says:
      mm

      Thank you Aamna, I’m so sorry you’ve not been well either! Learning to say no has been a big challenge for me, but one I’m getting better at! Much love, R

  3. Emma says:

    Thanks for sharing this Rosie. I can relate so much to this. I’m basically housebound after a few relapses but other people wouldn’t be able to see that! I blog too – mostly outfits and baking. Friends, family and readers see that and think I must be ok but the truth is far from it. I also don’t want to bring people down and I don’t want to be the sick girl so I try my best to come across as positive which is often seen as wellness. I’ve also just been diagnosed with POTS – which has been another challenge in getting people to understand and to see that medication isn’t a quick fix. I can see how we must seem from the outside if we’re being viewed by someone without any knowledge – we need go change that and you’re doing a great job by posting this!
    Sending spoons and hugs!
    Emma Xx
    http://www.emmaslookingglass.com

    • Rosie says:
      mm

      Thank you Emma and thanks for sharing your blog! I think us spoonies are the prime example of social media only showing highlight reels – everyone else might spend a while picking the right selfie, but we’ve got to pick the right day to take it in the first place! Thanks for the spoons, you keep some for yourself mind! R x

  4. daphne says:

    Thank you for writing Rosie. You explain so much that I was wondering about you. When I saw you at your mum’s party, you looked really well and although I didn’t speak to you for long, I gained the impression that you were more or less ok now. I am so glad you are doing this blog and am sure lots of good will come from it. You have given me a lot to think about. Lots of love from Daphne.

    • Rosie says:
      mm

      Hello Daphne, thank you so much for your kind words. Yes, mum’s birthday was definitely one of my good days (and I’m glad of it – it was such a lovely celebration). I’m looking forward to writing more and hopefully sharing some of what being ill is like. Much love, Rosie

  5. James Cunningham says:

    Rosie, I enjoyed reading your brilliantly written post on the daily challenges that you face with having ME, but I was also saddened to read it . Yes there are so many assumptions made if you happen to have ‘ a bit of colour in your cheeks’ , ( oh at least you look well today etc!) It’s very much a hidden illness & I think having to explain & justify yourself to (some) people only adds to the frustration & exhaustion of it. You are so young , pretty much the same age as my two daughters. Your post unravels a few misconceptions about ME. Yes good health is a gift& after reading your article, I am so grateful that it is I who has ME and not one of my daughters. Without sounding patronising, I wish you well.

  6. Sam says:

    Emily, wonderfully written! Wishing you lots of “good days” Pacing and rest do seem to be the only way to manage things, roll on a cure for us xx

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