The no-good, ignorant, annoying advice, everyone with MS can expect.
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| Have you tried kale, tho? |
Today I received some advice, unsolicited of course, from someone who is neither doctor nor patient, but who claims to know 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, bad for MS.”
Over the years, these people who, I presume, mean well, have felt it necessary to educate me on everything from costly and invasive surgeries and therapies in foreign countries, to extreme diets, to impassioned claims I should make sure it really is MS because the internet, or some headline, says drinking diet soda can produce symptoms identical to MS. I’ve heard all about the best friend who cured herself with an animal protein diet as often as I’ve heard about the vegetarian in complete remission.
So, what’s wrong with me? Why am I still sick?
The advice one receives with a chronic illness like MS is not limited to pushy diet and intervention tips either. I’m constantly being told, by people with uncomplicated bodies, to ‘keep fighting’ and, to ‘not give up’; because a positive attitude will for sure keep me from needing a wheelchair. (You lazy, giver-upper wheelchair-users, apparently have no one to blame but yourselves.)
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| Silent Killers |
If only it were that simple.
These overly concerned experts often 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 convinced they have the answer.
Here’s a little of what they don’t know.
Diet soda is disgusting.
Whatever the magic potion these people are pushing, chances are I already know about it. I’ve been on all the drugs, supplements and diets. I’ve sought out the experts 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 KNOW ABOUT HSCT. I’m an educated, informed, proactive patient.
I know more about my disease than you do.
Random stranger, I know you’re not actually a patronizing idiot. I know you just wanna 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 positive thinking, a litre of cabbage water and whatever the opposite of aspartame is.
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To Tripping…
I agree, diet soda is disgusting. I too am an educated, informed and proactive patient. Diagnosed with 2ndry MS in April 2012. I ambulate with assistive devices such as a cane, small child; walls… stopped working last year because of MS and spend a lot more time on the computer than ever before. I am a city guy, divorced, with no children and 46 years old. And I think (uh-oh) that personal connections, such as responding to blogs like this, are beneficial to me and in particular my MS. I like this blog. I like your wit, your charm, your intelligence and your style.. However imagined on my part it may or may not be. Congrats, continue, God bless, and enjoy.
JE
Dear City Guy,
Thank you for your lovely comments. I am really enjoying writing this blog. Maybe it is giving some purpose to what we go through.
What are some of your favourite blogs?
I assure you my wit, charm and intelligence are at least 80% legit.
A.
Wheelchair Kamikaze, Enjoying the Ride – Mitch Sturgeon, this one, Carnival of MS Bloggers and Lives Interrupted. Just to name a few.
JE
Best one was when my friend ( a doctor) told me (a doctor) how cooking with coconut oil (kinda high in Bad Cholesterol) could cure me of MS. Oh yes, also Parkinson's disease, MND, Alzheimer's and probably a lot more. I had to stuff a pillow in my mouth to stop laughing. Still, she meant well and is still my friend , although any sentence that contains the word 'coconut' or 'oil' is quickly rescrambled between brain and lips,
Yikes. A doctor? I feel like that is putting a lot of pressure on coconut oil.
Love this article. Priceless.
Thanks for reading Kat!
Tripping, thank you for your intelligent wit on this conversation. You made me laugh today as I recalled all the idiotic things "well meaning" people have also said to me. But you also touch on another important discussion, & that is patient's (and other people) blaming themselves for their disease. In our quiet desparation, we can & do believe all sorts of wacky things. We want control over something that has cost us everything. But we r not responsible for getting this horrible disease, & we cannot cure it either. Good nutrition & living good helps, but at the end of the day, we will still have MS. Let's stop blaming ourselves.
Tripping, thank you for your intelligent wit on this conversation. You made me laugh today as I recalled all the idiotic things "well meaning" people have also said to me. But you also touch on another important discussion, & that is patient's (and other people) blaming themselves for their disease. In our quiet desparation, we can & do believe all sorts of wacky things. We want control over something that has cost us everything. But we r not responsible for getting this horrible disease, & we cannot cure it either. Good nutrition & living good helps, but at the end of the day, we will still have MS. Let's stop blaming ourselves.
Thanks for your comments Kathryn. I couldn't agree more.
LOL Thanks for this Tripping. Damn all those potatoes I ate while growing up as a staple of my Polish heritage diet!! 😉 But I hadn't considered going to Lourdes. I should save up for that trip. It' only what?? $7K?? Not like I'm spending money on my MS medication. NOT!
I wonder if we could convince the government that a trip to Lourdes is a viable treatment option. A tax deductible trip to France would defo make me feel better.
Tripping, again you hit the nail on the proverbial head ! Oh, yes, the well meaning friends / relatives ! When I was first diagnosed with Progressive MS , the responses were wild and wacky. Spicy foods were apparently my downfall, as were processed foods (despite my vegetarianism since forever), and that good old guilt- trip standby – karma. I won't even mention the self-help snake oil remedies offered – Himalayan Salt, Gluten-Free Diet anyone? It's enough to make you cynical, so luckily, I already am…thanks again for the great piece – one surefire medicine is laughter!
Karma?! Wtf do they think you did?
Among all the "cures"that have been mentioned, I think the one my son, George, wrote on his blog "The Greek From Detroit" is without a doubt the most mind boggling of all. His blog piece, "Who is gonna cure MS", is too funny to miss. And, I can still laugh at it even though he died almost three years ago. He did love a good laugh.
Thank you for sharing. I just spent some time in this blog and enjoyed it very much.
Tripping,
I so enjoyed this blog and to be honest, it was the first MS blog I have read (weird for an MSer, huh?). I too, have been told about diets, coconut oil, and positive thinking until I want to throw up! Thanks for stating it so well for all of us.
I am imagining someone telling me about the horrors of potatoes and the miracle that is coconut oil and then just barfing in response. Maybe then they would get the message? Thanks for reading!
Exactly! Thanks
Oh yeah, love that, thanks for sharing!
… blah.. blah…blah…I know someone who is TOTALLY well thanks to some Japanese miracle-thingy… wait, and don't forget the powers of ozone…
Maybe that's the reason why I never read MS blogs (beside yours, obviously)
All the best, Bee
All of us have become quite educated, out of necessity. Your article is right on. Very classy Ardra.
Hookworms and hypnosis o my�� thanks for the laugh, I needed it.
I totally get this. I don’t have MS, but I do have RA and deal with pain every day. People have said some stupid and hurtful things. I think people don’t really understand what we’re going through. My mother is the biggest culprit when it comes to being insensitive. She has zero empathy. Yesterday she told me to get over my illness and that it’s my fault that I’m sick because I don’t sleep enough. I can’t sleep because I’m in pain all the time. I’m so sick and tired of people and their comments. It makes me feel alone and makes me feel like I did something to cause RA, which I didn’t.
Enjoyed the column. First time I have read your work. I was diagnosed in 1990. So I have a lot of years to hear opinions. I'm now 75 and doing very well. I'm not able to take any medications for M S because I'm allergic to them all. I have knots come up with every injection and after awhile, it hurts t o wear clothes. I've tried everything on the market and they all do the same thing. Right now i'm going thru a flare up. Have spent a week or so in bed because everything hurts and my head is very heavy. Like all the times before, this too will pass, if I'm lucky again.thanks for listening, I've never done this before.
Thanks for reading!
Aw thanks Bee. There are some good blogs out there. I have some favourites but it feels like people are posting more regularly to Instagram these days.
Thanks for reading, Bill. When I was first dx'd someone told me that I would quickly come to know more about MS than my family doctor. We do our homework!
That's what I'm here for!
It sucks when one of the 'symptoms' of chronic illness is having to explain away invisible symptoms. Unfortunately a lot of people don't really 'get it' unless they literally get it.
Thanks for writing Terresia. I'm sorry to hear you're having a flare up, but very glad to hear that after so many years of diagnosis you are doing very well. Rest up and hope you're feeling better soon. Thanks for sharing!
Oh my, after 19 years, I thought I'd heard 'em all but … Potatoes!?! Really??!!! Thank you, TOA, for giving this wheelchair dwelling SPMSer a really good, hearty laugh today. That, I needed! �� Spot on.
If I'd had a potato in my purse, I would have taken it out and started eating it right in his face!
Thanks for reading!