RA and Misconceptions - Why Us?
Rheumatoid arthritis is one of the most enigmatic chronic illnesses out there; dealing with it daily is a herculean feat. Fatigue, pain, general malaise, depression – the list of symptoms is endless and that’s not even counting the co-morbidities that can occur after years of disease and medication side effects.
In addition to dealing with all of that, those of us who suffer from RA also must deal with something else – one of the most extensive and deeply-held sets of misconceptions and myths to ever grace the list of stereotypes for any disease.
The seemingly endless RA misconceptions
I’m sure this isn’t news to most of you. Anyone who has been dealing with rheumatoid arthritis and chronic illness in general, I’m sure has already dealt with their share of misconceptions. Some that come to mind, in no particular order, are: gin-soaked raisins, cracking knuckles, turmeric, essential oils, yoga, eating a special diet, no dairy, no wheat, no nightshade vegetables, no sugar, no carbs, no alcohol, and no food at all – and that’s just off the top of my head. Why are there so many myths and old wives’ tales surrounding our particular type of illness?
Is Hollywood to blame?
Well, first and foremost I’m going to have to throw the ball of blame into the court of Hollywood and the media. I cannot remember the last time I’ve seen rheumatoid arthritis depicted accurately on a screen. They almost always show a woman, and they never show a child.
In fact, I once saw a commercial for an actual RA biologic medication from a company I won’t mention (it rhymes with BamGen) that insinuated that kids don’t suffer from RA! I wrote them a strongly worded tweet about that one, let me tell you.
Even medical shows where they claim to pride themselves on accuracy gets it wrong. That, plus the fact they always use prednisone as their go-to treatment as if biologics and DMARDs don’t even exist.
If all of that wasn’t enough, they always seem to show the RA patient without any deformities, joint replacements, RA nodules or assistive devices. Just once I’d like to see a teenager in a wheelchair due to rheumatoid arthritis on a show. I mean, just for fun, you know, something different. Surprise me, Hollywood!
Who comes up with this stuff?
The way RA and other similar chronic illnesses are depicted in popular media makes our lives more difficult for sure, but it’s not the only contributing factor. Somehow, the list of home remedies and old wives’ tales that circulate in popular culture keeps on growing and growing. The latest additions are probably turmeric and essential oils.
What I want to know is where is the meeting held where they decide what stereotypes and myth remedies are going to be added for the year? I really want to attend that town hall get-together. “I call to order the annual meeting of D.I.S.C. – disease ignorance and stereotype creators. This year we have some exciting additions to discuss – crystals and essential oils! So, let’s begin!” That’s how I imagine it goes in my head and then it spreads on social media and in PTA meetings and before you know it your kid’s soccer teammate’s mom is telling you that you should try eating 2 tablespoons of turmeric a day because she heard that it cures arthritis, and it definitely probably maybe certainly almost cured her friend’s uncle Jim. Possibly.
Enough of the unsolicited advice!
I always wondered what it was about RA that makes people think they need to offer you remedies they read about on Facebook, right next to the story about a Sasquatch that was seen buying toilet paper in a Wal-Mart in Saskatoon. The two illnesses I have had – cancer and RA – seem to share that distinction.
This doesn’t happen with other illnesses. No one walks up to someone who is having a stroke and says, “you know what you need to try? Magnets.” No one happens upon someone with an amputated limb and says, “According to my aunt’s Zumba teacher you should try meditation. It can help with that missing arm.” There isn’t a person alive who would walk up to a person with ALS and tell them that they can breathe on their own again if they just try a drop of lemon oil and a drop of peppermint oil in their diffuser – which they will sell you for two easy installments of 19.99. But for some reason, with RA (and cancer), people assume that you want their unfiltered, untested, and potentially unsafe medical advice. Some even get upset if you don’t treat their amateur medical advice with the same respect you’d treat a doctor’s prescription.
I’ve had people who I’ve had to lie to and tell them that yes, I did swallow two tablespoons of spicy dry red powder every day for weeks and it didn’t work, just to get them to stop harassing me about trying turmeric. It’s absurd and something that is uniquely RA.
This is only the tip of the iceberg when it comes to RA and the myths, stereotypes, and misconceptions. We haven’t even touched upon medical professionals and their obvious biases, but that’s for another post. For now, I think this is enough. I don’t want to scare anyone who has been recently diagnosed too badly. Talk soon.
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