I was going to leave the blog alone this weekend but was having a look at Instagram this morning just to see what was going on. And I saw something that has, for once, made me so angry that I just cannot leave it. A person popped up on one of the feeds I follow around MS. Like all things, Instagram is just something to take or leave. A healthy pinch of salt is needed.
For this character? A salt mine would be better as opposed to a pinch.
Some Background
At this stage, I had better be careful. In the end blogging is but of a pastime. And a way to make sense of all that is going on. Of course, MS figures big here. As Robert Douglas-Fairhurst put it in a podcast about his book ‘Metamorphosis: A Life in Pieces’, there is an element of therapy in writing. If anyone reads it or not is almost besides the point. His book is worth reading, though.
Some material I read about MS that is written by the people who have it does not work for me. For example, I am actually not wound up when someone says ‘but you look so well’ when I tell them I have it. Others do but I would rather look well than unwell, to be honest. That sort of comment does not wind me up.
Moments of Anger
Sometimes, though, I can get angry. I use walking aids. Not just a stick or the arm or shoulder of a friend but also a couple of leg supports for my right leg. One keeps my foot raised and also strengthens my lower leg. It is invisible but causes me to walk stiffly. I use the other walking aid a little less. It involves a lot of elastic attached to a belt to pull my foot up. It does the job but is even more noticeable than my other walking aid because I look like Clifton Suspension Bridge. Of course, that is going to get the odd second glance. That’s normal enough, I can live with that.
It went too far, during a day out in Rotterdam watch the Tour de France Femmes 2024. A fantastic day. Great watching time triallists rocketing by. I was Rubberband Man, as the Detroit Spinners would put it, using my elastic belt. They were doing the job, along with the shoulder of my friend. The first little irritation was a very solid stare from someone who had perhaps a beer or twelve too many. The stare was just too long, too sustained, you feel noticed. I did the usual and stared back. A long stare normally gets a stare back. Does nothing but I feel childishly better.
DON’T DO THAT!
Then, on a grass bank, I was waiting for my friend to get some water. Hot work watching cyclists. I was adjusting the belt that holds up the elastic bands when someone shouted.
“DON’T DO THAT!”
I wondered who was being shouted at and realised it was me.
I asked what I was doing wrong. I mean, a belt with elastic bands can’t be that offensive, can it?
“THAT!”
Wow, elastic is that offensive! Amazing.
I was completely clueless at this point.
“PEEING ON THE BANK!”
Now. Obviously I wasn’t. To be shouted out like that. Well, that did make me angry. I informed the idiot that I had MS and was adjusting my belt. Of course, they could not apologise. So at that stage I told them to go forth and multiply. Just not in those words. Therapy…
Enough Crap
Two little incidents. But I use them to illustrate the point. They seem pretty silly now but they hurt at the time. I could give more space to this sort of thing but usually I ignore it. Indeed, I could turn the whole f*cking blog into a bitter rant about how the world around me reacts to MS. But the therapeutical angle, for me, would be gone. There would only be more anger through writing angry things.
But what I heard this morning, what I saw. I am more than furious. Irrationally so. It was just A.N.Other ‘think positively and everything will be better’ type of thing. Annoying, irritating. But this individual suggested their approach worked with other diseases. Just believe in yourself and you can think yourself better! Hallelujah!
Therapy
Nonsense that can be easily ignored but, for once, I just couldn’t. Because it is the kind of stupid, toxic positivity that is so dangerous for all conditions. It is also a kind of victim-blaming. The idea that you can just think yourself better when dealing with any medical condition or, indeed, any psychological issue. It implies that it is somehow your fault because you did not think correctly.
That these charlatans exist is bad enough. They can believe in themselves and that is fine. If it works for them, great. If the person on this video had Remitting Regressive MS as opposed to Primary Progressive, they may be in remission anyway. No harm if they keep themselves to themselves.
But this is someone who is projecting their bullshit to vulnerable people. People who are scared and confused and may not have the medical support that I have. People who may actually feel it is somehow their fault. That is just so… distressing. My medical support is not always perfect but to hear this smiling individual with their ‘trust me’ eyes and ‘you must believe in yourself to get better’ say that their approach was better than a doctor’s. For once, I just had to write this.
Therapy.
I have also unfollowed the account that rebroadcast this crap. So there. That crap is still there though. Which makes me angry.