We, the Multiple Sclerosis, disabled and wider D&I community do love complex words and explanations. ‘Intersectionality’. ‘Diversity, Equity and Inclusion’. ‘Disease Modifying Therapy’. ‘Toxic Positivity’.
I’m gonna tackle the last one today. There’s a phrase used by lots of MSers (that’s people with Multiple Sclerosis). ‘MS Warrior’. I’m absolutely fine about people identifying with that, but I just don’t see myself there.
I’ve done everything right in handling my MS. Straight onto a treatment as soon as it was offered. Exercise. Good sleep(ish!). Staying active professionally and socially. Decent diet with the odd naughty cake. Vats of water. Possibly too much Tequila. 😬
And yet I’m pretty ill with my MS. I have daily carers. I struggle to make a coffee. Socks on and off? Half an hour without help. Am I failing? In my ‘battle’? Nah, I’m embracing my disability and enjoying life. I’m generally super positive and honest when I’m not.
And talking of ‘battling’, that’s another bugbear. A lovely local mummy I’ve known for over 40 years recently ‘lost her battle’ with cancer. She went quickly, surrounded by her family. I’m not sure what her son and daughter think about the phrase, but I don’t see that she lost a thing. She lived a long, active life until just a few weeks before her passing. She was wonderful and she will be much missed. I’m crying as I write this and kinda dreading the funeral.
In short, I’m not angry about my lot. I have lived a blessed life. I have a lovely family and friends. I plan to tootle on for years. But I’m not brave. I’m not an inspiration. Daily life is very, very tough. There’s no shame in that last bit. And I realise there are people feeling far, far shittier about their lot than me.
’Battling’ and ‘Warrior’ are two pain points for me, but I found these helpful lingo suggestions here: https://www.verywellmind.com/what-is-toxic-positivity-5093958
I’ve said it. Apologies to all the battling warriors out there…