Monday 29 September 2014


Shift MS is an excellent charity focused on providing a community for young people with MS.  It provides excellent information to guide people through the often lengthy and frightening diagnostic process.  I follow them on Facebook, and they're also pretty good at providing links to other interesting, MS-related news and stuff.  They often pick a post of the week too.... which brings me to this.

One of my pet peeves about MS is the way that some people seem to allow it to become the centre of their lives: it dominates and defines everything about them.  I understand that everyone is different and I'm also acutely aware that, as these things go, I'm relatively lightly affected by my condition.  It's a lot easier to be phlegmatic about these things when you ran 80 miles in the last thirty days and probably a lot harder when you struggle to put one foot in front of the other and your body doesn't feel like your own.  I understand that.  But you always have a choice, don't you?  You can choose to let this thing dominate your every waking moment and define you, or you can refuse to allow it.  We all have our moments, sure, but it only takes over if you let it.

I know I can sound relentlessly and tediously stoic when I talk like this, but here's an example of the kind of thing I'm talking about.  This post was pulled out by Shift MS as their blog of the week last week.

"As people suffering with MS we face immense hardships due to our physical disabilities and have to overcome social stigma that surrounds the disease. I feel that pressure every time I mingle with the general public. Whether it is true or all in my mind, I feel that people are always staring at me....Another major obstacle is trying to integrate with normal society. Most events and venues do not cater to people suffering with MS, which makes assimilation discouraging and sometimes impossible....MS leaves its victims striving for the best quality of life we can get. After all, Multiple Sclerosis does not kill us. For me it is annoying and a huge inconvenience that sometimes causes problems. I acknowledge Multiple Sclerosis in moderation but I do not let it run my life. Still it does continue to humble me and shape my world. MS is recreating me.  Multiple Sclerosis robs us of our outside roles and independence. Which most times amounts to our identities. I guess you can say MS is a thief. Or better yet an identity thief."

General public. Normal society. Assimilation. Victims.... The author makes a point of saying how she does not allow MS to run her life, but from the language she uses, that ship has already sailed and her world-view is largely defined by her condition. (I also don't much like the way she uses "we" so readily to speak for everyone with MS.  MS is famously a disease that is different for everyone.  How about we agree that I won't generalise about you if you don't generalise about me?)

Look, I don't want to be unfair: I know nothing about the author or her life or how hard she has been hit by MS and it's wrong of me to make assumptions about her.  I also sort of understand what she's trying to say... but words are important and, consciously or otherwise, they can also be revealing.

When I think about my own condition, I don't want to allow it to become all-consuming and I do not want it to ever define me.  I can't run away from it (no matter how many miles I do a month).  As a progressive, incurable condition, there's also every chance that it's going to try even harder to grab my attention and to dictate what I can and can't do in the future.  Maybe, if that happens, my attitude will change, but I really hope that I'll still be able to stick two fingers up to it and keep buggering on regardless.

It only beats you if you let it.


  1. Brilliant stuff. I was totting up the "victim-speak" in that blogpost as I read it.

    The Shift.MS posts all read the same to me, especially recently.

    The level of self-selecting victim-hood was why I had a problem with the MS Society catalogue.

    And both posting on the same day! I feel like we both turned up to a party in the same skirt!

  2. Steve, if we're at the same party, we're in the corner looking at the records.