Monday 16 February 2015


Today, a friend of mine shared this post from “Positive Living with MS” on her Facebook feed  It talks about how, sometimes, the most difficult question in the world to answer is “Are you feeling better?”

I don’t know if people realize how difficult being asked such a question is for someone living with a chronic illness. Am I feeling better than what? How I was feeling yesterday? Last year? Five minutes ago? It’s not like I have the flu or a broken arm. Multiple Sclerosis is a chronic progressive disease which means it doesn’t go away just because I went to bed early, had a ten minute break at work, or took two aspirin this morning.I am sick with a disease that has no known cure. My immune system is rebelling and causing chaos in my Central Nervous System. It is attacking the nerves throughout my brain and spine and eating them like they are hot wings at a tailgate party. It affects my entire body from my eyes down to my toes.”

Some of this rings true for me, but because my MS remains largely invisible to all but the keenest observer, I don’t generally have to do battle with people’s preconceptions of the disease. I certainly don’t keep my condition a secret and I do occasionally have to deal with the odd person asking if I’ve thought about some amazing alternative therapy or other that they have heard about in passing and feel they should pass on to me… but they’re generally well-intentioned when they do offer up these little gems, even if I am perhaps a touch insulted that these people think I have done so little research into my own condition and just like to do nothing but lie back and suffer.

Whilst I can understand the frustration in that post, it seems to me to be rather ironically lacking empathy. It’s all very well accusing other people of not being sensitive enough towards a complex and unpredictable neurological condition, but perhaps we should be more understanding ourselves towards people who are only reaching out in the best way they know how. Maybe they’re being clumsy and insensitive and perhaps downright ignorant, but they’re basically expressing concern, aren’t they? I’m not sure that warrants such a (passive-)aggressive response.

She goes on:

But regardless of everything I am facing…no matter what happens or how down I may feel…I am a fighter. Each morning I wake up to a battle. Not one of my choosing, but I wake up swinging with all the strength that I have. Sometimes I am weak and MS wins. But even on my worst days, I am not a quitter. I may never “feel better” but this battle isn’t over and neither is my life. I am simply living it differently than you.”

Again, I kind of know what the author means here, and perhaps I’m being overly-sensitive, but that reads to me as a little bit “victim-y”. It’s wallowing, even if only a little bit, in the condition and the sense of being the victim of a remorseless enemy.

 I don’t buy that. MS isn’t personal; it hasn’t chosen me any more than it's chosen anyone else; it isn't evil or malevolent. Living with MS isn’t a battle and there are no winners or losers. We may have a chronic, incurable neurological condition, but in a very real way, we’re no different to anyone else. Life’s a death sentence for everyone. All we have, all any of us really have, is to choose how we live with whatever cards we've been dealt.  Good or bad. You might wish this had never happened to you, but so do all who live to see such times. But it is not for them to decide. All we have to decide is what to do with the time that is given us.

Wait… that last bit might not be all that original and I think it could have been Yoda who said that first  Or Confucius.  Or maybe Gandhi.  Well, anyway, it's good advice.

Get busy living, or get busy dying, as Gandalf used to say to Frodo.

That too.


  1. Battles, fights, quitters, positivity. YUK. Give me strength (but not to win the war). Tough psychologically if /when, due to disease progression rather than their inability to fight sufficiently hard, they get worse.

    Good friend of mine, 11 scientific letters after her name, directed me to a cure for MS (and for good measure Parkinson's, MND, dementia and who knows, cancer too?) obtained by eating coconut oil. That's right, coconut oil. Nuff said.

    But she means well and she's still a good friend. And it's true that laughter is the best medicine, albeit temporarily!

  2. As you say. It's like the attitude of some rich people towards the poor: I made it rich by working hard and pulling myself up by my bootstraps. If you're poor, it means that you haven't worked hard enough. In fact, you're probably lazy. So, if you are crippled by your MS, that's because you haven't fought hard enough? Not for me, Clive.