As a human being in 2018, I am living in a constant barrage of other people’s opinions. Whether it’s from my mom or a NYT article about millennials, there is no shortage of people who want to weigh in on the way I live my life.
That’s a pretty universal feeling. Most of my friends are probably experiencing the same thing –– and some of them have much more overbearing mothers. But something unique about the opinion-a-thon that is life is the experience through the lens of someone with an illness. The moment you get a diagnosis, it seems that everyone you’ve ever met (and quite a few people you haven’t met) want to line up and give you advice.
Since going public about my illness, I’ve been offered every “cure” out there. Friends of friends of friends have sent me messages telling me to buy a certain tea, or do a certain type of yoga, or switch to a certain kind of diet. It’s an experience anyone with a chronic illness knows well, fielding a call from a step-uncle telling them that a sugar-free diet will cure their rheumatoid arthritis or that turmeric capsules will rid them of Lupus.
I have a lot of complex emotions about this phenomenon. On one hand, most of these people mean well, and that should count for a lot. For some people, sending you a cure they heard about on an episode of Good Morning America provides them comfort in knowing they are trying to help. It’s the last ditch effort of someone who can’t accept that you have an incurable illness and that they can’t fix it. It’s hard to watch someone you love go through something painful and know that there’s nothing you can do to stop it. For some people, sending these potential cures is their optimistic way of trying to do just that: cure you.
(I won’t even get into the people that don’t mean well –– but beware of people who try to sell you “cures” on Instagram in any form. These people do not mean well. These people want money and have decided to get it from a vulnerable population of people who will do almost anything in an attempt to feel better.)
Additionally, I try to cut loved ones some slack, because while none of their suggestions will cure me, some can actually help. Turmeric actually is an anti-inflammatory. Yoga actually can be good for digestion. Meditation won’t heal my intestines, but it’s a solid practice for anyone looking for a way to cope.
But I think there’s a reason so many sick people complain about the phenomenon of well-meaning rubberneckers trying to cure them. First of all, suggesting a million and one holistic cures implies that the patient in question could be healthy, they just aren’t trying hard enough. There’s an undercurrent of blame in the implication that there are “cures” available and all of us are just choosing not to take you up on them. It’s the same blame that comes across when someone says “should you really be eating that?” when I’m out to dinner.
There’s also a discomfort that comes with these suggestions, because sickness is a deeply personal issue. The way my body is or isn’t functioning may be something interesting for you to comment on, but for me it’s an everyday reality. And the ways I choose to deal with that are my choice. For the sick, agency over our own bodies is so important. I can’t control the way my body malfunctions, but I can make educated choices with my doctors on how I treat it. Your offhand text or Facebook message ignores that I’ve spent years researching and consulting with professionals to make the best choices for me. It implies that what I do with my body should be your choice.
So while I appreciate the positive intent behind the messages, I politely request that the loved ones of sick people please cut it out. Positivity will not cure your nephew’s diabetes, and bone broth will not change the fact that your coworker has POTS. If you’d like to have an opinion on something, please keep it to less painful and personal topics, like what music I’m listening to on Spotify. And if you really want to help, being a listening ear to a patient’s experience is much more helpful than any faux-cure could ever be.