Warning: Contains frustration and mild hippy-ness.
I generally try to avoid online forums dedicated to MS, having been bitten when I was newly diagnosed and looking for positivity that was in very short supply. A lot of whinging and doomery gloomery occurs with many online communities. However, I couldn’t help getting emotionally caught up in one particular post on a Facebook page the other day. Sadly, a woman whose husband has Primary Progressive MS (PPMS) was bitterly berating people with Relapsing Remitting MS (RRMS) for having it ‘easy’ and still managing to ‘push through.’ It was depressing to read such hateful words aimed at potentially very vulnerable people who have found themselves with this life changing condition. 85% of people with MS are initially diagnosed with RRMS, so it is inevitable that most online things written about MS focuses on this type of the condition. Besides, the words ‘Relapsing’ and ‘Remitting’ are ridiculously misleading, in my own experience there doesn’t seem to be much in the way of ‘remittance’ from a condition that has splattered my life with unwanted paint. So, to be told that you have it easy from someone who is clearly ignorant of the whole MS spectrum is pretty darn frustrating; and yet it happens time and time again in a never ending game of what I like to call ‘MS Top Trumps.’
I imagine that in a lot of minds a PPMS card trumps both Secondary Progressive (SPMS) and RRMS by quite some margin in terms of disability and pain. SPMS and RRMS probably have more of a shot with energy levels and smile factor. The game can be played across other conditions too. For example, MS versus ME (a pair of conditions that are forever getting muddled up!) I even read once that a fellow MSer would rather have cancer than MS because at least then there would be a chance of a cure… There are truly no words for just how unhealthily baffling this kind of comment is.
The older I get and the more people I meet the more my eyes are opened to the crazy amount of different battles every one of us faces. The Sorting Hat happened to give me RRMS, so that is the condition that occupies me the most, but The Hat dishes out bucket loads of other conditions and challenges for people to face. Everyone has their own personal mountain to climb and I wish we could all find some way of accepting and supporting each other. We’re all human and we’re all in this together.
In the words of the great Ringo Starr, ‘Peace and Love’.
7 thoughts on “Top Trumps”
Brilliant as usual! Have a brilliant weekend xxx
Thank you – You too! x
Great post as usual and real food for thought. I ‘moved up ‘ from RRMS to SPMS and sometimes feel resentful that the only treatments are for RRMS. But this is my deal in life and we’re all in this MS spectrum together.
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This is great, so true! I always question whether my M. S is bad enough to talk about so never comment on M. S sites. I know there are many people whose M. S is worse than mine. I have RRMS and question the remitting part as some days I do feel really bad, can hardly walk. I think am I justified in commenting now? Thanks for this post.
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Thank you, I was nervous about posting this one in case my anger shone through too much! I’ve had a very positive response, however, phew!
Having had Ms for 30 years 26 rrms 4 spms I thought I’d had some of the worst symptoms until Trigeminal Neuralgia reared it’s ugly head, nicknamed the “suicide disease” and now I know why, give me MS any day TN scares thehell out of me at worst I was on 3,600 Gabapentin a day and 360 mg Zomorph a day 😕
Oh man, that sounds rough – sorry to hear that!