I love creative advice, but….

So all spoonies and zebras out there will know that 90% of the time, when disclosing your illness to someone, they’ll try to relate by giving advice. You know-

“My aunt’s cousin’s cat had that! They cured her by rubbing her entire body with toothpaste, but it had to be the whitening stuff!”

“My nephew had that. His parents dropped $37,000 on an experimental treatment and he’s cured! You should try it!”

And so on.

Don’t get me wrong. We all know people are just trying to relate. That doesn’t really matter, though, and here’s why: The vast majority of the time, the advice given doesn’t actually work and was only thrown into the conversation in a lame attempt to relate to the affected person, despite being trivializing.

Now, I have Ehlers-Danlos Syndrome, hypermobile type. It sucks, and often, when I tell someone about it (because no one knows what it IS, they just know it sounds rare and scary), they start out with, “I’m so sorry,” and lead into, “You should try yoga!” The thing is…that’s the first thing doctors tell us. (Or, y’know, one of the first things, along with the insinuation that we’re making it up because we’re depressed, when in reality we’re depressed because we hurt like hell all the damn time.) And it works a small fraction of the time, but most people find no benefit from yoga, and only end up more tired and sore than they were when they started.

I think it’s so annoying and, often, downright insulting because it seems to imply that this person who has had no medical training whatsoever, and who has never had to live with a chronic, debilitating amount of pain (or any other disability or illness, for that matter), is knowledgeable enough about this rare disorder they just learned about to suggest treatment for it. In reality, the only learning they’ve ever done about said disorder is taking in the knowledge that it hurts and their cousin twice removed had it (if it’s even true).

I want to point out that even 99% of doctors aren’t knowledgeable about this sort of thing (EDS), because it’s a rare illness that many people don’t even believe exists, and it’s especially hard for POC, disabled people, and people perceived as women to gain access to decent medical care because research is done on cis, white, able-bodied white men. Everyone else is thrown under the bus. So, even if I do manage to get decent medical care…

…it still annoys the fuck out of me when people say, “Oh, hey, my mom had a deaf dog when she was younger!”

The fuck do I care if your mother had a deaf dog? Are deaf people like that dog to you? Fuck off.

Anyway, my point is that even though people want to relate and give advice-

1) they are not qualified in any way, shape, or form to do so
2) they tend to inadvertently liken the person explaining their condition to animals (dogs, cats, pigs, horses, etc.), or outright call them “less than,” in a sense

Sometimes, I have interesting tidbits to help people out, like for mosquito bites. For mine, I boil some water, and very, very gently dab a paper towel wet with it onto the bite, quickly! After gently drying it, I cover it in toothpaste for about half an hour, then remove it, and bam, no more itching for about 24 hours. Or, for instance, to fight an itchy, flaky scalp, I put a tiny bit of shampoo in my hand along with a spoonful of salt and rub it into my scalp nice and firm!

But the difference between my advice on how to deal with dandruff without a prescription and others’ advice on how to deal with a chronic illness is that my salt trick is usually requested information.

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