I never had a broken bone as a child, but I wanted one. The kids who had an arm in a cast for weeks on end got all sorts of benefits – from extra attention as everyone wrote on their plaster, to being allowed to go first in line, to not having to take part in physical education. It never occurred to me that it probably HURT to break an arm. I just wanted the cast.
Now that I’ve made it to middle age without breaking or even badly spraining anything, I’m hoping to keep my track record clean in this area! But I admit, there’s still a tiny corner of my mind that wonders what it would be like to have the people around you be that sympathetic and noticing of your every need? I am very conscious of how lucky I am to have nothing visibly wrong after thirteen years of living with MS – but I’m sure many of you can relate to my occasional frustration when it feels as if everyone around me (even those who know me well) seems to completely forget I have MS at all.
It’s an interesting dichotomy. On the one hand, I want to be treated the same as anyone else. If I am applying for a job or asking to be part of anything, whether at work or in the community, I expect to be given exactly the same opportunities as others; even by those who are aware that I have MS. But on a bad day, I’d really enjoy a bit of special treatment! Whether it’s being offered a seat, being excused from unnecessary functions I don’t have the energy for, or hoping the other patrons at the gym will allow me to turn on the fan on a cold day. Much as I wish people “got” invisible MS better, when I think about my own expectations in different settings, I can see why they find it tough!
To some extent, I’ve decided there’s not a lot to be gained by trying to make those around me understand what it is like for me to live with MS. I don’t suppose it is really possible for them to fully appreciate my situation - just as I will never know (I hope!) the infinite tiny inconveniences of living with a broken bone for a time. Even if there were some magical way of giving them full knowledge of my daily existence, it wouldn’t change things for me. What does help is when people are aware of what assistance I do (or don’t) need and accommodate me where possible. That’s at least partly up to me.
I posted previously about the course I did a couple of years after my diagnosis. One of the lecturers used to photocopy the following week’s reading material and bring it to class to hand out. He liked to use a different colour paper each week. Unfortunately for me, that was a year I had flare after flare involving optic neuritis, so a lot of the time my contrast vision was really poor and it was impossible for me to read small print that had been photocopied onto coloured paper. The first week it was a real problem – but it was easily fixed by going to see him, explaining the issue, and asking if I could please have my notes on white paper. Too easy! For the rest of the semester he came with a large pile of coloured notes and a single set of white ones that he quietly passed to me with no fuss at all. He didn’t mind making the extra effort so that I could study properly, and that small concession made all the difference to me. It would make life a lot simpler if I were better at communicating such needs whenever they arise!
The “Seeing MS” campaign did a great job of educating those who are interested in understanding some of the invisible symptoms of MS. I pointed it out on my Facebook page when it first came out, but I should probably use it more when people express genuine interest in how MS impacts on my life. And I need to get better at giving simple but honest answers when a friend or colleague asks how MS affects me – bearing in mind that “how are you?” is often intended as a rhetorical question! If people don’t ask, for now I’ll try to stick with articulating any particular needs I have and leaving it at that.
The Unaffected One