What Have You Done To Your Leg?

Back in the heady days of my early diagnosis I was reluctant to admit that there was anything wrong with me, or rather, anything different about me.  I was paranoid that people would use my diagnosis as gossip, as something exciting and juicy to be shared and talked about and so I asked those close to me not to tell anyone outside of my family and friendship circles.  There came a point, however, when it became impossible to hide it.  As I limped and bumped and crashed my way along the corridors at work, I would get quizzical looks and the occasional smirk from colleagues who I knew well-ish, but not well enough to disclose my newfound suffering to. 

When I caved in to using a crutch, around 3 months after d-day, I would walk with my head down to avoid any painful questions from people I passed.  You see, when you are new to using a crutch or a wheelchair you are convinced that everyone’s attention is focused on you in much the same way that a pregnant woman might feel as though her bump has been clocked by every passer-by or a newly engaged person might assume that the sparkly new rock on their finger has caught everyone’s attention.

The fact that I was using, and still use, a crutch rather than a walking stick, speaks volumes about my longing to appear ‘normal’.  A crutch, especially when used by a young person, connotes injury, mishap and temporary debilitation.  The trouble with this is that people assume that it is safe to ask you about it; there is, in their mind, no risk of offending you or, indeed, of offending themselves.  Long-term disability is still taboo, temporary injury is not.  Naturally, people like to offer positivity and solutions, and when there are none to be found it stumps them and they invariably, and unknowingly, say the wrong thing.

After 11 years of living with this beast of a condition I am at ease with discussing my MS with anyone who wishes to discuss it.  I can be frank about it.  I can be candid.  I can laugh.  I’ve become accustomed to seeing strangers squirm when they ask me what I’ve done to my leg and I respond, “Oh, nothing – I’ve got MS”.  I’m used to people staring at my wheelchair and wondering what’s wrong with me but being too scared, or too polite, to ask.  And I’m used to friends desperately searching for the right words and the right tone whenever the topic of progression comes up.  It doesn’t affect me in the way that it used to.  I understand people’s need to say something positive.  I’m guilty of it myself.  But everyone means well.  Everyone always means well.

It’s quite satisfying for me to think back on the many occasions when someone has asked me what is wrong with my leg and to see how far I’ve come.  I no longer dread these conversations, I even enjoy them, it’s always amusing to see the look of horror on someone’s face when they realise that I haven’t fallen off a cliff and broken my leg, but that I actually have an incurable debilitating disease.

Strangers have approached me in lifts, in queues, at the checkout, at the playground, in an airport, in the hospital, on the school run and, most recently, in the soft play area of the dinosaur park.  As I was innocently sitting and watching my child play, I could sense a man staring at me.  It freaked me out at first but when he finally found the courage to speak it dawned on me that this was another kind stranger worrying about my injured leg.  It transpired that his dad has MS and, sadly, is in a very bad way.  This poor guy bumbled his way through the conversation making things worse, to his mind, with every word that he spoke.  I lost count of how many times he said ‘sorry’ – he had nothing reassuring or positive to say and I could see that he was so desperate to offer some hope to me.  I laughed it off and hopefully made him feel better as we parted ways with a polite, if awkward, cheerio.

It’s fascinating to observe the different ways in which different people react to disability.  Being someone who swings between using a wheelchair, using a crutch or, if the conditions allow, using nothing, I can confidently say that people treat a person with a visible disability differently.  When I’m in my wheelchair sea’s part for me – people insist that I skip ahead of them in queues, they keep greater eye contact than is necessary (or comfortable), and they do everything in their power to let me know that I am special.  Using a crutch doesn’t elicit the same levels of care, after all, it is assumed that I’ve simply twisted my ankle or some such nonsense.  And when I use nothing, I am treated as wonderfully or as poorly as any other normal person. 

Huh, it does make you think.

3 thoughts on “What Have You Done To Your Leg?

  1. That’s the best blog yet…fabulously written and so truthful and to the point. We both share similar experiences with crutches/wheelchairs/rolators and being free from all 3!!

    We love reading your blogs, and having coffee and cake!

    You’re the best!
    N&K xxxx


  2. Your blog is wonderful. Just wonderful! Diagnosed (unexpectedly) at the peak of the pandemic & have had very little contact with anyone else with MS. This particular issue, the invisibility of the disease, and soothing other people’s reactions has been on my mind a lot recently. I also caught one of your interviews on mental health. It’s a potent combination of invisible struggles-you are not alone X X


  3. I agree with you about everything! When I used to walk with crutches, 2 things always bothered me: 1) Did people think I was drunk or a junkie? Neither of my legs were bandaged up so what was the problem? 2) People never leave you enough space. Crutches don’t just fit neatly at your side, you need to spread them out a bit for balance.
    Moving to a full time wheelchair user, lots of things bother me: 1) The pitying looks, 2) People walking by when they can see I’m clearly struggling to get something down from the top shelf in a shop 3) Our car isn’t a WAV, the wheelchair is in the boot, so parking in a Blue Badge spot always makes me anxious in case someone is going to see us pull up (my husband drives) and not immediately see the reason why. Do they think we’re pesky blue badge parking slot cuckoos? I
    It’s not all bad though, sometimes people are incredibly kind, get the thing in the shop for me and ask if there is anything else they can help with. (I know a lot of supermarkets have personal shoppers who will go round with you, and I know it’s my horror at losing my independence that stops me from asking. (Oh the contrariness, moan when people don’t help/terrified when they do (I’m not that disabled am I?))
    And when children stop and stare at me or ask “Why are you in a pushchair?” I often laugh and say “I’m too lazy to walk!” (Sometimes I tell them it’s a disease, if I think they can understand. Or I’ll see a toddler just learning to walk and laugh and say to the parent “S/he walks better than me!”


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