Today I received some advice, unsolicited of course, from someone who is neither doctor nor patient, but who knows some 'medical professionals'. It went a little like this: "I don't know if you've ever thought about your diet before but eating potatoes is really, REALLY bad for MS."
Over the years I've heard extolled the virtues of everything from costly and invasive surgeries and therapies in foreign countries to extreme diets to simple claims I should make sure it really is MS because 'drinking diet soda can produce identical symptoms'. Often I hear about the best friend who cured herself with an animal protein diet and just as often I hear about the vegetarian in complete remission. So, what's wrong with me? Why am I still sick?
In addition to pushy diet and intervention tips I am constantly instructed to 'keep fighting' and to 'not give up' because a positive attitude will for sure keep me out of a wheelchair. (You lazy, giver-uppers in wheelchairs apparently have no one to blame but yourselves).
All from people who Mean Well
If only it were that simple.
The people who Mean Well are not my friends and family. Without exception they barely know me and I suspect, if questioned would be hard pressed to provide an even accurate-ish description of multiple sclerosis. The people who Mean Well are passionately convinced they have the answer.
Here is a little of what they don't know.
Diet soda is disgusting.
And I am never not thinking about MS. Whatever the magic potion, chances are I already know about it. I have been on all the drugs, supplements and diets. I have sought out the best experts internationally and hopped on more than one plane to more than one country for tests and treatments. I know all about stem cells, bee stings, cobra venom and hyperbaric chambers, hookworms and hypnosis. I am an educated, informed and proactive patient. I know more about my disease than you do.
Random stranger, I know you are not actually a patronizing idiot. I know you just want to help. But here's the thing. You don't have to fix me. I really do know you mean well. It's just that, rest assured if it were that obvious to not be this fucked up, I would already be doing it. Times ten.
The people who Mean Well are not the worst people on earth, just the most annoying. In a world where everyone knows a guy or a guy who knows a guy whose gluten free sister cured herself with a trip to Lourdes it can feel frustrating to confront such an oversimplification of a serious problem. My serious problem. But how about I make you a deal? I will feign interest in the story of how your coworker has MS but is totally fine and when you tell me about the worst thing you've ever had to face in your whole life I will tell you how to quickly and easily solve it with a litre of cabbage water and whatever the opposite of aspartame is, because my great aunt Ella had your exact same problem and she totally fixed it with chia seeds and positive thinking.
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