"Inspirational" people
My rant today has to do with certain, seemingly well intentioned news articles. They often contain an embedded message that reinforces a myth about the nature of MS and those who suffer with it, that aggravates many of those who suffer from MS and their caregivers.
Such stories usually include something like, "Jane, who was diagnosed with MS, is such an inspiration. She runs 2 marathons a year, swims 5 miles each day, and lifts weights every day and teaches a weekly zumba class. She really shows what you can accomplish in spite of MS.’’
As a longtime caregiver for my wife who has MS, I can't tell you how many times my wife and I have fielded well meaning comments from friends and colleagues, who've read the article about " Jane" or some other MS Superwoman or Superman, and they'll say things that imply that if my wife "would only set her mind to it, like "Jane" did in the article" or if she'd only "be more of a fighter", she'd be able to accomplish more with her life.
As those of us who deal with MS in real time know, MS occurs with varying degrees of severity, advances at varied rates, and causes symptoms that range from numbness to debilitating fatigue to cognitive impairment, to the inability walk, see, hear, speak or swallow. The ability to run marathons and conduct zumba classes are often the first things an MS patient loses 😀
Knowing that these comments come from well intentioned people, I try to diplomatically suggest that the symptoms of an individual's case of MS are usually the limiting factors in their lives, not the individual's attitude or willingness to fight the symptoms. I guess it's part of our culture to embrace the whole Protestant work ethic/rugged individualism thing, that says that anybody can do anything, if they'd only put their mind to it. That would be great, If only it were true!
I think anyone who has MS or loves someone with MS can relate to what you wrote, Mario lobo! I know many of our members struggle with celebrity stories that make it seem like MS is no big deal. Or even the commercials for various MS medications can make it seem like just taking a certain pill will make it possible for you to climb mountains! The misleading nature of these ads and stories can be disheartening, to say the least. Thank you for sharing your thoughts with the community. And I think you are very wise and thoughtful to try to carefully educate people about the real toll MS can take. You have probably expanded many individuals' understanding of the condition with your calm, measured responses to somewhat ill-informed comments and suggestions.
Thank you again for sharing! We are glad to have you here. Best, Erin, MultipleSclerosis.net Team Member.
Mario, thank you for posting this (I am an MS patient).
The unrealistic way that MS is often presented to the general public is becoming more ridiculous each year. It further burdens patients and their family members.
Amen brother. My wife and I were watching that reality TV show "Alone" a year ago or so. One of the contestants was diagnosed with MS and she was all about, "Oh, I just changed my diet and my MS symptoms disappeared". Sure, diet can impact your symptoms and there is on-going research into the whole microbiome thing. She fell into that "Jane" category you talked about.
Well, the show is about making people survive purely by living off of what they can catch, kill or harvest from the are where they are dropped. So, this woman's diet went into the toilet because she couldn't find a lot of protein. Sadly, but not surprisingly, her symptoms flared up and she had to drop out.
My gut reaction was, "Well, what did you expect to happen, you idiot!?!?!?!" Put your body that is already compromised by an immune system disorder and you don't expect anything to happen? I will admit that there was a bit of schadenfreude on my part, but these people do annoy me.
Thanks for posting what a lot of us feel.
Craig
I couldn't agree with you more. I was the one that was always on the go 100 miles an hour in life and my job. MS for me was like hitting a brick wall
Those "Jane" stories...to me... mean nothing! I was Jane before MS. Now..Im not sure who I am 😢 so I understand completely
