In a world full of people where trusting the guy at the gym to alternatively cure their diseases seems more logical than to trust a trained medical doctor, there are tons of people claiming they have cured incurable diseases by taking a chance on advice from people without a degree. Here's what they really mean when they say "x diet cured my lupus."
Not so long ago, I wrote an article for XOJane expressing my frustrations at people without medical degrees who think they can cure lupus. It's become a relatively popular phenomenon for people without medical degrees to claim that they can cure illnesses that baffle physicians, simply by eating correctly. These people have "done their research" (aka have tooled around on Google and read books by people like Dr. Oz or David Wolfe) or have read a lot of blog posts by FoodBabe and Freelee the Banana Girl (neither of which have any expert knowledge in specific chronic conditions or even degrees in nutrition).
The Lupus Research Institute communicates very clearly that there is no cure for lupus. People will either ignore this saying they didn't realize the "community had reached a consensus" (as though people who haven't even read the latest research on the condition are able to cure it), or tout that it is a "big pharma" interest in keeping you ill and taking medication.
On that last note, I will say that all doctors were reluctant to put me on my medication because it is so strong. I have been asked to wean myself off of one of them because of its strength and did attempt, but my symptoms came back. I'm not sure doctors who stand to make money off of me being ill would want me to go off medication, but that's a whole story for another day.
You will also get people who say they don't understand why you would take immunosuppressants when you should be building up your immune system. These people lack the basic understanding of lupus, which in its nature is an overactive immune system. "Building up your immune system" would only make the problem worse.
Ever since I wrote that article, there have been no shortage of people without medical degrees telling me how sorry they feel for me that I believe in science "like a religion." I lost an acquaintance because he (who studied exercise science) believed I wanted to stay ill as I didn't think the paleo diet sounded right for me. I've had people comment on my article that they've cured mild depression and acne through a diet change (in fact, several people have said this) and therefore I should be able to cure lupus. Whether or not they have cured their depression and mild acne through a diet change (or other outside factors that coincidentally helped their ailments), diseases are not a one size fits all.
I've even recently had a crazy zealot come on my YouTube telling me they don't understand why I take medication (that keeps me alive) that does nothing to improve my symptoms. However, what they don't realize is that it actually helps keep my able to do things...even if it isn't to the full standard others are able to. I was told the doctors want to keep me sick and I could have developed lupus from anything from my make-up to where I live...which also makes no sense since I haven't stuck to one type of make-up or lived in an environment consistently for more than 2 years since my diagnosis.
I digress. The point of this article is that when you're standing your ground against the type of people who blame you for your lupus, they will inevitably bring up someone who claims to have cured themselves of lupus. If you search for it, there will be a few people who are far between who claim that x diet or x non-medical treatment cured them completely of lupus and their lives are far better. And of course, anyone who doesn't do it is an idiot.
Lupus cannot be cured, so here is what those people really mean:
1) I never had lupus to begin with.
Some of these people may have struggled with lupus-like symptoms, but never have been diagnosed with lupus. Because in the alternative medicine community, there have been rumors that lupus is a build up of toxins, it is entirely possible that people are diagnosing themselves with it. Lupus is known as the "great imitator" because it does mimic many diseases and no two cases are the same. If people feel sluggish and have achy joints, they may jump to a lupus diagnosis from WebMD or something similar. That way, when whatever it was they had clears up or they stop eating something they were allergic to that was causing these issues, then they can say they have cured themselves of lupus.
2) My lupus is in remission
Lupus is known for its hallmark cycles of remission and flares. Some people with lupus experience remission for years on end in which they do not have symptoms at all and can go off their medication. This does not mean they have been cured or that it will not come back. This can occur as a coincidence when trying a raw, vegan, paleo, or whatever the hell "cure diet" is out there, or it can happen before the person tried the diet and then they claim the diet (or whatever alternative therapy they want to claim miraculous helped them) cured them. It is always the goal of physicians to have their patients go off medication, especially strong medication, so if someone can do that, that is fantastic. Again, this does not mean the lupus is cured or that it will never come back.
3) I had medicinal induced lupus
Lupus SLE can actually occur as a side effect of certain medication if you are susceptible to lupus to begin with. The way to cure this form of lupus is to switch the medication. People can go off the medicine that caused the lupus to begin with and all of their symptoms will disappear. They can associate this with "beating" lupus or magic snake oil or a crazy diet, but this does not mean they naturally cured their lupus. The agent causing it was simply taken away.
4) I have discoid lupus
Discoid lupus presents only on the skin and usually doesn't lead to SLE. People may be confused of their own diagnosis and experience lupus SLE-like symptoms at some point when they only have the discoid variety. After the symptoms clear, they can claim that they were cured of lupus SLE by a magic juice, diet or potion.
I still don't understand why people without medical degrees have the hubris to say they can cure an illness they are not familiar with or have never studied. Or why people listen to them, only to end up either sicker or simply disappointed. Or why we should have a mistrust of the entire American College of Rheumatology. Yes, individual doctors are only human and can be wrong, but I think I trust a coalition of people who actually study my disease and work with it daily over someone who studied sports nutrition/read an article online.