#GratefulME: Idea for Twitter meme

[Michelle]

I'm a big believer in the cliche that gets beaten into every writing workshop student: show, don't tell. I'd rather someone show me that he or she is kind or smart or funny than merely tell me he or she is kind or smart or funny.

Because Twitter is filled with a lot of anger (which is often very valid), accusation, and angst, and because ME patients are viewed (absolutely incorrectly) as just whining (the whole "fatigue" thing doesn't help), I thought a Twitter meme in which we ME/CFS patients posted tweets about what we are grateful for with an eye to showing what it's like to live with this disease might be helpful.

Examples: (Note, I've not ever posted my tweets here so fingers-crossed I'm doing it correctly. Also, I'm not an especially prolific tweeter.)



or



or



or



In each instance, the tweets show that I'm pretty functionally impaired. I'm in bed. I can't go to the forest but there's a YouTube video. I need and am grateful for a home care worker. I keep a tea kettle next to my bed (I'll be grateful for the microwave and mini fridge/freezer in future tweets). I struggle to change positions in bed so I'm grateful for my adjustable bed. By focusing on my gratitude, showing my illness feels less like complaining and may have more impact than simply telling people I'm functionally impaired, i.e. really f***ing sick. I'm using the #GratefulME and suggest this might be something we could try as a community. If nothing else, it will make Twitter just a slightly less nasty place.

That said, I do feel frustrated by the way healthy people use the sick and disabled for "inspiration." And that legitimate concerns of the ill and disabled -- especially people with ME -- get ignored by their being labeled "complaining." But, alas, we must work with the socio-cultural situation we have rather than the one we should have. And this does have the effect of making a horrible situation--being bedbound/homebound--a little more endurable by focusing on what one has to be grateful for.

 

[ahimsa]

That's a good thought, @Michelle

Another idea is to use the #DisabledJoy hashtag in solidarity with other folks who have disabilities. I know it's not quite the same idea as being grateful. But it does fight against the incorrect stereotype that folks with ME are always combative and complaining, never happy. For those of us lucky enough to have a good day now and then, and able to do something fun, the #DisabledJoy tag would work.

The idea behind the #DisabledJoy hashtag was to fight the belief that anyone with any type of disability must be miserable all the time. Therefore, if a disabled person has any happy photos on their social media accounts, or if they comment about having gone on some social outing, well, they must not be very sick, let alone disabled! Maybe they are faking it?

It's such a double bind, especially in this era of "smile or die" beliefs (aka, the power of positive thinking).

On the one hand, if you are angry/sad/complaining then maybe your real diagnosis is depression. Or maybe your bad attitude is making you worse. Or maybe you're just not trying hard enough to get better.

On the other hand, if you are feeling happy, and smiling, well, then your symptoms can't be all that bad, can they?

I think I even read that insurance companies have tried to use this tactic against people who apply for long term disability (LTD) claims. So, it's not just a matter of being annoyed by this attitude. It affects whether people get insurance benefits to live on.

I also want to add that I think it's helpful to have multiple approaches. Sometimes we are angry -- and rightfully so! But sometimes we are feeling joyful or grateful. It's good to spread that around, too.

 

[arewenearlythereyet]

I think the way we as society deal with the long term sick is a really big problem. It’s partly the “think happy and all your troubles will fly away” bullshit that pervades our society but also the increasingly media hyped view that disabled people are somehow there to make able bodied people feel emotions they wouldn’t normally feel as a form of sick entertainment.

I honestly think this is about the able bodied feeling uncomfortable around sick people and diverting attention away from that feeling rather than face into it.

Trouble is it is uncomfortable and horrible and not very nice ...the healthy need to understand this before they can feel true empathy for another human being...we don’t live in this fake world of Facebook and twitter where everything is a staged and contrived to paint the best possible picture?

I think it’s tricky. On one hand I don’t want to be conforming to anything that hides the truth of the matter since that means nothing will ever change, but on the other hand, some people are too far gone and sucked into the fake world to be bothered with.

It’s a balance as with anything in life I suppose ...don’t be a bore but show the rough with the smooth? I’m still working on it.