Anyone who lives with an incurable, chronic, degenerative disease eventually comes to what I call their Shawshank moment, named for a scene in the movie The Shawshank Redemption.
We come to realize that in the words of lead character Andy Dufresne, we need to “get busy living or get busy dying.”
It might not be the most profound of decisions when it comes to living with multiple sclerosis (MS), but it’s the first of what will be many steps that get us on a sustainable path of life with a heavy sack of disease on our backs.
We Each Live Our Life With MS Differently
For some, consciously deciding to “get busy living” is all they need to get up every day and get done what must be done.
For others, we dig deeper, we explore ourselves and our options, and we go searching for better. Better ways, better results, better opportunities.
I myself keep looking for better, but I do so with a pragmatist’s prescription and a realist’s resolve.
What I do and the way I do it will not work for most and perhaps not even for many. But I get on with things well enough for me, and I’m happy enough to continue along this path.
I don’t push my way on anyone, but I’m happy to offer my thoughts on living well with this disease to anyone who’s interested in listening.
It therefore bothers me to no end when the positivity police start banging on about how much better everything can or will be if we just do X, Y, or Z and do it with positivity.
Please, No Toxic Positivity
I coined the term “unicorn piss and butterfly farts” about the toxic positivity spewed by members of the wellness community who prescribe only from the visible spectrum when we all know that there are invisible aspects of our experience that no one else can see, let alone experience.
We needn’t feel bad about ourselves for not fitting into another person’s mold of what a good life looks like. It’s like an average person trying to follow a supermodel’s online makeup tutorial — they’re just never going to look that good!
I was recently asked to consider speaking at a multicondition patient advocacy conference. I’ve seen online streams from events like this, and they can sometimes feel like I’m watching a reality TV series, with both bad product placement and the volume and contrast turned up far too high.
Luckily, I know I’m not the only one. In doing some advocacy work for MS Ireland recently, I saw someone else use the term “toxic positivity” about some members of the MS online world. So it’s not just me. …
No One Wants to Feel Judged for How They’re Coping
All of us have our own lived experience with this disease. Your symptoms might be nearly the same as mine, but the way you live, or cope, with those symptoms is likely quite different from the way I do. But that doesn’t make either of our experiences any less valuable or authentic than the other. They are just different, and neither of us needs be quashed because we’re not “working hard enough” to make it better.
The world of social media and online influence has given many people in the MS community a voice and an audience. I’d like to think that while I never sought such an audience, I have served the community well and without seeking personal gain.
I guess what I’m saying is that if something or someone is making you feel like you’re not enough because of the way you’re coping (or not coping) with your MS, it’s time to turn the channel or leave the room. We’ve got enough on our plate without someone judging how we’ve arranged everything on it.
Rant over.
Wishing you and your family the best of health.
Cheers,
Trevis
