Sunday, 6 December 2015

Stupid Is As Stupid Does

The other day I wrote a blog post in support of Mauril Bélanger, the Ottawa-Vanier MP, a Canadian parliamentarian who, at the peak of his career, has been diagnosed with Bulbar ALS. This form of ALS is one of the toughest; it move faster than other forms, usually stealing your voice first. In addition, I posted a Tweet of support and care.

Following my Tweet, I was included in a thread from another person in the Twitterverse offering advice to Mr. Bélanger. Her first tweet was that he should engage in strong exercise, something which is a definite "NO" for people with ALS. Strong exercise simply exhausts the body and accelerates the symptoms. I corrected her, to which she replied "I think you can exercise your way out of any disease." I referred her again to the facts, to which she further replied "I do not know the disease specifics...". She continued with additional bad advice, blithely unaware of the damage she could cause if anyone was fool enough to believe her.

I wondered what kind of person would give bad medical advice to a terminally ill person without even knowing about the disease, so I read her profile on Twitter. She describes herself as a "Slide whistler, strummer & la la la, drummer & acro belly jiggler/wiggler, flipper, fiddler & hoofer, tangler, verb conjugator, bikini kickboxer, teacher". Nowhere in this description do I see anything with any sort of medical credential. She does little credit to her claim as a teacher.

This is one of the worst things about ALS. It happens with other diseases too. People with no idea what they are talking about, no education, no facts, no knowledge... these people come along propounding their view without consideration for the person on the other end. Their panacea is the worst kind of snake oil sales. I won't name this person in my blog; to do so would simply justify her existence.

If you don't really know about ALS, or some other topic on which you have an opinion, you have two choices. You can stay quiet, listening to those who know, learning what you can. Your other choice is to say something stupid. Of course, it is the way of human nature, particularly those who know the least, to comment on things of which they know nothing.

If you really wish to support someone where you have little knowledge, here is my advice; admit that you know little, then offer your love, care and compassion. There is not a one of us who doesn't know about love, care and compassion. There is nobody with an illness who doesn't need to hear that you love them, care about them, and are concerned for their welfare.

No comments:

Post a Comment