The Virus Diaries: Welcome to Pain, Healthy People

March 28, 2020 at 3:41 pm (Fully Sick, general life, Mental illness)

trigger warning: discussion of depression and suicide.

 

One of the facebook groups I’m on (two in fact) are for sufferers of fibromyalgia and chronic fatigue—all-encompassing, usually permanent conditions that change everything for the person who is sick.

A few people have taken a quiet or not-so-quiet satisfaction in the way healthy people, ordered to stay home and relax, have freaked out. Here’s one person’s take, used with her permission:

I wrote quite a bit about the weird mental uncertainty of this COVID-19 moment in my gaslighting post, and it was natural to talk about fibromyalgia there too. One of the surprising bits of the chronic illness experience (definitely including mental illnesses) is how hard it is to believe that it’s really happening and your life really is changed forever (let alone how hard it is to get family—especially close family—and medical professionals to treat you seriously).

Now the whole world is turned upside down and inside out, and there are oh so many people sitting at home going mad (some literally; sorry about that) and struggling with thoughts of, “Is it really that bad? I feel fine. Would I even get sick if I was exposed?”

Disabled people all over my twitter were pointing out earlier this year that the message of, “If you’re healthy then you’ve got nothing to worry about!” was also saying, “Don’t worry, only old people and sick people will die, and they’re not really people so THAT’s fine.”

Going further back, let’s talk about Robin Williams and Stephen Hawking: two brilliant men; one who was mentally ill and one who was disabled. So when they died, there were a LOT of images like these:

And I’ll be honest: those are beautiful images, and my heart does a little leap for joy to think those two beautiful men might be free of pain.

But.

As many pointed out at the time, both images also say that people who are depressed or disabled are better off dead. Which is especially bad because so many people really do, in their heart of hearts, believe that to be true.

Some people believe it in a semi-noble way, being empathetic or at least trying to be. Hopefully that sense of empathy leads them to take useful action in their lives, like making their house wheelchair accessible or voting to increase funding for groups that help the disabled. Others are purely selfish, and want to pay less tax—and that means cutting funding to those less fortunate and quietly hoping they just vanish.

And let’s be honest. For the most part, vanishing is what we do. People who get sick stay home. People who are chronically ill soon realise that talking about their normal life (sprained my back brushing my hair so now I can’t sit up for two weeks) get real boring—and real depressing—real fast. So if they’re smart, they stop talking about what’s actually taking up the majority of their time and brain space (pain, struggling to pay bills, etc) and keep their conversation to acceptable bounds. Most of our friends aren’t able or willing to accommodate our needs, or don’t understand that our shy request to have people come to our house rather than theirs might be because we have suppurating boils that might bleed through our clothes at any moment so we’re scared to go out. Or that being in a room above 20 degrees gives us diarrhea for the next three days. Or that driving our car makes our wrist throb for the next week because we’re too weak to safely change gears.

So we just… don’t show up. And we’re isolated and scared and in pain, and very very poor (which makes us feel utterly worthless).

Welcome to our world, healthy people. I hope this helps you to understand the sick a whole lot better when the world is “normal” again.

And I’ll try to be more honest about my needs, too.

I frequently pretend to be super lazy so I don’t make people uncomfortable eg. “Hey Felicity, got any cool plans for the weekend?” “Me? I’m gonna make Chris do some gardening and then I’m going to nap. It’s going to be awesome.” when really I WISH I could stay awake a full day, and weed the garden myself, and maybe even actually play with my kids or *gasp* go out and DO something fun.

Anyway, here’s a cat looking adorably pissed off:

Unfortunately, although chronically ill people might be professionals at staying home looking at the wall, there are other bad things going on for us: difficulty getting medication, the loss of support staff and services, difficulty getting the very specific foods that our digestive systems can take, etc. And of course no visitors.

Resource of the day: Most chemists are now delivering regular medications. If you’re immunocompromised or over 60, consider calling and asking them for assistance.

Donation of the day:

A friend of mine makes gorgeous hair bows for primary age and under girls. Let me know if you’re interested and I’ll hook you up. She also has fibromyalgia… and three kids suddenly all at home. Ouch.

Her web site is here, and this is a bow I bought off her, that Louisette adores.

Personal action of the day: Reduce the number of times per month you go shopping, if you possibly can.

Hoarding item of the day: Having said that, Aldi has $50 fire pits (and $70 camping stoves) which are fun AND will be lifesavers if the power gets interrupted in winter (very unlikely to last more than an hour but I’m hip to the apocalypse baby). I literally got one. Plus if we’re still isolated when TJ’s birthday comes around, that + marshmallows will make an epic party for him.

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