Why you shouldn’t say “You don’t LOOK sick!” to someone with ME/CFS

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Tomorrow, Friday 12th May 2017, is International Awareness Day for Myalgic Encephalomyelitis and Chronic Fatigue Syndrome. For more information about ME/CFS, see the links at the bottom of this post.

Photo available from Max Pixel via CC0 license.

If you see a person with myalgic encephalomyelitis or chronic fatigue syndrome, it probably means that they are having a good day. For you to see them (unless you are a very close loved one, carer, or health care professional), they must have been able to leave their bed or sofa today. It might be their one good hour, or even minute.

Seeing them, you might be taken aback to hear that they have a disabling illness, and see no harm in expressing your surprise.

Please, don’t.

Here’s why.

When you remark to a person with ME/CFS that they “don’t look sick”, or tell them that there’s no way to tell that they have a chronic medical condition, or ask them why they have that cane/wheelchair/mobility device/disability pension if they can WALK or SIT UP or THINK, you may be reminding them that:

  • a quarter of us are housebound and for majority of the rest, it takes a huge amount of preparation and planning to venture outside safely. Yet most people we encounter will take being outside for granted and minimise our treasured accomplishment.
  • despite ME and CFS debilitating up to 242,000 Australians, around half of our GPs do not believe we have a ‘real’ illness and think that we possibly are faking symptoms for attention.
  • although we live with a poorer quality of life than patients with cancer, diabetes, and heart disease, most people will rather judge our condition on our looks.
  • there is no cure for ME/CFS, yet the Australian Department of Health has only directly funded three studies into the condition in the past 17 years, and that funding ended in 2005. Most of it went to hepatitis C research, and studies by psychologists (ME/CFS is not a psychological or psychiatric condition).
  • the burden is on us to constantly prove that we are ill and to ‘perform’ disability. This saps energy we don’t have.
  • it often feels like our lives have been stolen from us, permanently, and yet disclosure of our condition is often met with disbelief or suspicion instead of sympathy.
  • the majority of people still believe that disability always ‘looks’ a certain way and may shame or punish us publicly if we do not conform to their preconceived ideas.
  • exertion (such as walking, reading or having a conversation) worsens our symptoms. So, while we may be able to be active in this moment, we may face days, weeks (even months) in severe pain and fatigue to pay for it.
  • we may know the cost of exerting ourselves with this outing and be trying not to think about the physical payback that will come later. We want to enjoy this moment.

If you’re surprised to see a young person with no ‘visible’ disability walking with a cane or standing up from their wheelchair (aren’t mobility aids visible?) – or to hear that a person with no mobility aids is severely ill – ask yourself if it’s more important for you to satiate your momentary curiosity, or for someone with a serious illness to have a nice day.

Curious about ME/CFS? For last year’s ME/CFS Awareness Day, I recorded a short audio documentary giving a run-down of the illness for my podcast Just A SpoonfulYou can listen here.

For more you can listen to my interview with 3CR’s Women On The Line about living with ME/CFS, or this conversation I recorded with fellow writer and ME patient Lefa Singleton Norton. Or read these pieces I have written for Seizure Journal: the satirical How to talk to sick people’, or memoir piece ‘An inconvenience’.

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Women with ME/CFS on the line

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Amid the hectic scramble to get the new Just A Spoonful episode out this week, plus other deadlines, I forgot to tell anyone that I did a radio interview with Melbourne’s 3CR last week! But I did, and it was a thought-provoking (for me) chat with Amy Middleton, host of Women On The Line and editor of Archer magazine. Here’s the link, or you can listen below:

I’ve listened back to it and lawd, I was so fatigued that day. Battling through some epic brain fog.

We talked about women and chronic illness, specifically myalgic encephalomyelitis/chronic fatigue syndrome (and I go into why the name of this particular illness is confusing and significant). We had time to go beyond talking about “what it’s like” living with ME/CFS and to get into the difficulties accessing a diagnosis, let alone treatment.

Amy asked for my thoughts on the overrepresentation of women in ME/CFS (more women are diagnosed with it than men), and while my answer was mostly speculation, it has sparked an interest in me to look deeper into this statistical anomaly. Could ME/CFS’s lack of funding be linked to its overwhelmingly female patients? Sounds a bit conspiracy-theory, but who knows. The more I learn about gender bias in medicine, the more alarmed I become.

Anyway, I really enjoyed the interview, and I hope you will too! If you’d like to read some of my writing about ME/CFS, here’s my Seizure piece from last year, ‘How To Talk To Sick People’, which I recently read aloud to an audience for the first time and oh my god, so snarky.

To be frank

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If you’ve been following me on Twitter or listening to my podcast, you have probably gleaned that I’ve been having a severely rough time for the past few months. As I mention often, I live with ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome), which is difficult at the best of times, and over the past 18 months it has been steadily getting worse. It means I can’t do things as perfectly as I would like, for example finishing The Other Movie Project with 12 shiny monthly instalments sitting in my archives. Instead, the blog posts kind of tapered away while my health got worse. This annoys me. This annoys me a lot.

I like to do things well. No – I need to do things well. It’s a personality trait that gets me good things and also bad things. The same people who tell me to take it easy on myself are also the ones usually telling me how “naturally good” I am at something. “You’re just a natural!” It sets my teeth on edge: I’m good at stuff because of how hard I’ve worked at it. If I stop putting pressure on myself, surely the praise will stop, too.

This is a thing I am working on within myself. I’m trying to do everything at 80% instead of my usual 120%. I would tattoo “TAKE IT EASY” on my forearm if that wasn’t a rather extreme tactic and a bit counterintuitive.

As a chronically ill person, I’ve had to adjust my personal standards, to be pleased that I managed to take a shower today instead of taking that as a given. I still get frustrated, comparing where I’m at now with the ideal, healthy life I thought I’d be living. When I became disabled it felt like I was transitioning out of “the world” and into “sick person land”. It still feels that way sometimes, but now I try to lean into it.

Actually, I still live in the world.

I’m telling you all this so you’ll understand what this means to me:

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In the new Frankie magazine that came out on Monday, they feature me in a showcase of young creatives doing interesting things in 2016. I did the photo shoot and interview for the Frankie feature when I was at one of my very lowest points, physically and mentally. The acknowledgement of my career and my work gave me a huge lift. And I wasn’t being singled out as a “disabled person to watch” or even a “woman to watch” (which is always nice but kind of feels back-handed) – I was recognised just for being creative. For what I do!

Look what sick people can do!

We do things!

Flipping through the magazine, or being on ABC Radio lately, I’ve been having moments I wish I could send back to my teenaged self while she grappled with her new diagnosis. She’s hoping that she’ll be a writer and be in magazines and talk on the radio one day, and she can’t see a way to doing any of that while she has ME/CFS. She’s desperate for the illness to go away forever. I daydream about going back in time and telling her it won’t, it will come back and stay, her worst fear will come true. I’d also tell her that while she is disabled by illness, she will: perform poetry at the Sydney Theatre Company; be invited to teach workshops at a university (she’s a real nerd, she’ll love that); see her writing published in a book; be interviewed on triple j (she’s 16 and triple j is everything, this will freak her out); get PAID to tell jokes; and do a photo shoot for a fashion magazine. And sometimes these cool fun things will coincide with the absolute worst dips in her health, or will even happen because she’s sick.

But she probably wouldn’t believe me tbh.

Ermagerd I made a podcast

Just A Spoonful Podcast

My baby is aliiiive! It’s real: an idea that I conceived to distract me while I was stressed and working dumb hours to get Not Much To Tell You ready for Metro Arts/Queensland Poetry Festival. I was struggling because my health hit one of its low periods a couple of weeks before the theatre season began. Cue panic attacks, clutching chai teas and wailing “WHY THE FUCK DO I DO LIVE PERFORMANCES, I AM CHRONICALLY FATIGUED.” With much scheduled rest time and Gatorade, I made it through the season! And stumbled giddily into my next project: this podcast.

just-a-spoonful-headerJust A Spoonful is a fortnightly conversation between me (ME/CFS sufferer, professional goofball) and a guest – another young person who is living with chronic illness and/or disability. (It was going to be weekly but I am too bloody tired for that.) We talk about our day-to-day lives – how we live, what we live for. I don’t know any spoonies (good term, I recommend Christine Miserandino’s post on The Spoon Theory) who don’t do anything. For me, having a fraction of the energy a healthy person would have means that I am much more precious with it. I try to work on things I really love. This podcast is an excuse for me to find interesting people who are somehow coping with permanent challenges and chat to them about their lives and their interests and giggle into their awesome faces.

Much thank-you to the amazing Erin Michelle for illustrating the podcast artwork. She is a super talented artist and does commissioned artworks so you should check out her Etsy right now. (I particularly like her ‘Selfie While Crying In Public’. I was like, here is a person who knows how to be productive with life challenges.)

I am thrilled to have music by Anna O (‘Sleepless’) and Marksman Lloyd (‘Silver Magic Ships’) featured on each podcast episode. Their respective EPs are two of my fave EPs to come out this year and it’s ridiculous that they both said yes to me using their tracks. They’re both from Perth, too, coincidentally (my hometown makes great music).

Episode 1 of Just A Spoonful is online and ready for listens! I’m still working out the whole iTunes thing but you can listen to the SoundCloud file via the Just A Spoonful site: justaspoonfulpodcast.tumblr.com

My guest for the first episode is filmmaker, TV producer and general sasspot Steph Dower. Steph is an intern at The Edge (State Library of Queensland), producer of Her Untold Story on 31 Digital, and works as a film editor. She lives with a permanent disability, and does not think Mark Wahlberg is funny. We talk movies, Michael Bay, and ‘living’ on the Disability Support Pension.

Here’s a photo of Steph at work (centre):

Borrowed from the Her Untold Story Facebook page: fb.com/heruntoldstory31

Her Untold Story: fb.com/heruntoldstory31

I’m pretty excited about this new project! I hope it will bring some entertainment to everyone, plus comfort to those living with chronic medical conditions and feeling like they’re “missing out” on youth. Take heart. We are young and fully sick.

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