No, We Don't Have to Be Grateful For Your Advice




I was diagnosed with Lupus SLE in 2010, after five years of suffering debilitating symptoms. As someone who has been through the ringer with an illness no one can seem to place, until they can and you're told it has no cure, I know all about how desperate you or your family members get to find anything that can help. At first, you read on the Internet that tumeric can cure achy joints, that going vegan can cure your illness, that someone has published a book about how you can cure your incurable illness through a strict diet--and the message seems to be that if you try hard enough, you can relieve your symptoms.

But after years of falling for it, you begin to realize that your doctors are the only ones who can actually help you manage an incurable illness. They aren't hiding something nefarious and mysterious to get paid, and no book that someone unqualified has written can help you feel better.

I've been very vocal about the fact that I don't believe that alternative medicine can heal your body, or that "food is medicine," in the sense that diet change can cure diseases that have not been tied to it. I've even published a first-person narrative on it, yet I still constantly receive incredibly ableist advice from people with no medical knowledge telling me that I can "take control of my health" with their program.

The thing that makes me the angriest is often that they expect us to be grateful for their ableist advice.

Five years ago, I severed ties with someone I went to graduate school with because he insisted that he had healed mild depression and some acne by going Paleo. While that's fantastic for him, I reminded him that my illness is incurable and I'm still doing a lot despite the diagnosis. He continued to press it, and when I asked him to please leave me alone, he accused me of wanting to be sick and liking the secondary gain I got from it. He was, after all, just trying to help, even though his advice wasn't rooted in anything scientific--so why wasn't I grateful for him giving me his coaching sessions for free?

In this case, I am not grateful for advice that I did not ask for, nor am I grateful for advice that shifts the blame of my illness on me. When I refute this from well-meaning "advice givers," saying this seems awfully like the Medieval times when illness cast upon someone for their sins, but in this case, for not "eating clean," I am told I am "angry" or want to stay "stuck in my illness," as though it is a matter of willpower to not have an incurable illness. In one case, I was even told I can't cure myself because I want to use my illness for attention.

There is also a person I have had trouble with on and off for quite some time. She believes that she can guarantee improvement of any illness with a protocol she invented. At one point in my life, I blogged often about disability and spoke about it on a YouTube channel. Her remarks began to border on defamatory as she pointed out to others that I was an "asshole" and "angry" for not accepting her treatment that she so kindly provided for me. We stopped speaking to each other for quite a while, and then got back in touch, where I had trouble getting over the tactics she used to speak with me about trying her diet. Admittedly, I wasn't very nice to her. However, when we were unable to come to a resolution, I was told again that I'm an angry individual and that I'm "jealous" that she's been able to find health and I'm still "suffering" and am "too far into my illness" to see it.

Oddly enough, when she said that to me, my lupus was so under control my doctor was considering lowering the dosage of my medication and the other disease I have, interstitial cystitis, seemed to be in a period of remission. While this woman had no idea what my daily regimen consisted of or even how I was faring physically, it seemed somehow appropriate to turn it around on me, all for partially not being "grateful" she was also generously providing her regime for free despite me politely declining in the first place.

A disabled person I follow on Twitter recently stated that if people give advice you never asked for, you don't have to be grateful for it, yet those of us with chronic illnesses are supposed to be eternally grateful to those who have never really suffered a chronic illnesss who place the lion share of the blame on us.

So able-bodied people with nutrition programs and well-intentioned, but unsolicited, advice: no we don't have to be grateful for you telling us we are not trying hard enough to be well. We don't have to defend ourselves when we say thanks but no thanks. And by gosh, we are not angry or "hateful" people for not wanting to participate in your programs; we've just heard it enough. I can speak for several disabled individuals when I say that we are just tired of the constant sales pitch, the constant blaming and goading us to be distrustful of the medical professionals whom we put our lives in the hands of.

If a disabled person asks you to back off, please take note.

This piece was also posted on The Mighty. 



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