"I've Cured My Own Lupus" Decoded: What It Actually Means

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.

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  1. I liked the post you wrote originally, and this is a great follow up as well - I'm sorry to hear you've had so much antagonism as a result! From a medical point of view, I can tell you that doctors would LOVE it if diseases such as lupus could be cured as simply as changing diet - and the NHS especially would wish this was the way! Sadly there is a lot of misunderstanding in the world and I think it's important to educate people about the fact that anyone can claim anything, you just have to know not to believe everything you hear.
    Jennifer x
    Ginevrella | Lifestyle Blog

    1. I think Blogger ate my reply. At any rate, I agree with you, especially because it seems like the NHS would benefit from people being cured since it costs the government so much to subsidise care and meds. If you don't live in a country with private healthcare, it makes no sense. And even when I lived in the US, I had doctors skeptical of my meds (because they are so strong but they do help) and have also medically been asked to wean off them there to see if I could still function without them. Sounds weird that a doctor who would WANT you to be on meds would then try to get you to go off of them?! ;) Anyway, thanks for commenting and reading! xx

  • This post surprised me. Are people that ignorant? Blimey. Sorry you have to deal with such idiots. It's not like acne and lupus are the same! Pseudo science and people who think they are medical or science experts with no training drive me up the wall. I have a masters in chemistry and I see all sorts of nonsense on my Facebook feed claiming to be true when it's clearly rubbish. Latest one was about Mercury on vaccines.. Sigh. Why can't people research properly before ramming their incorrect ideas on someone.

    1. People are just dumb. I think what gets me is people like Freelee who have literally NO training who then claim they can cure diseases. If you use her as an example, okay she's been vegan for a long time and she may be someone who can advise on vegan recipes getting proper nutrients whilst being vegan, but then claiming she's curing every disease in the book? Bullshit!

  • "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." -That is just horrible for someone to say. I don't understand people sometimes. I have asthma an some people don't get it. When I walk up steep hills or have extended exercise and I'm slower or out of breathe or difficulty breathing I sometimes have to remind people of the fact that I do have asthma and while I do my best to push through it sometimes I can't. I get a range of reactions but it really bugs me when someone says "Oh, I knew you were going to say that," like I am using it as an excuse.

    1. Ugh it is so annoying. I think people focus more on how inconvenient it is for them than anything else. People, ourselves included I think, are ultimately selfish. I think that's part of the problem!

    2. I realize that sounded like I thought you were selfish for having asthma. That's totally not what I meant!

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