Living with MS is never dull. As well as all the symptoms, which can change on a daily basis, it feels like I constantly have to explain myself. To make life easier, here are five things I would love people to understand about MS:
1. I’m not drunk, I’ve got MS
I might feel it sometimes, and I certainly might look it, but I’m really not drunk. The idea that people at work may be thinking this is what made me ‘come out’. I couldn’t stand the looks as I came back from lunch. Now, I try and make a joke of it in the office… I’ve yet to risk having a few at lunch and seeing if anyone says anything though.
I also think it makes me paranoid and means I drink less as a result. When I’m on a night out, I’m anticipating the comments from colleagues, so would prefer to be sober and prove them wrong in a weird way.
2. I can ‘look well’ and still be disabled
This is the thing I find the hardest. For me, the invisible or cognitive symptoms are some of the worst, but people only really notice when my walking is dodgy.
I get so much more support, especially at work, when my disability is visible. But when I talk about cognitive things, like forgetting people’s names or big chunks of presentations, I’m not sure they get it. It’s like they think I’m just making excuses.
This is probably summed up best by my colleague, who said “I don’t really believe you’re disabled, you don’t do much disabled stuff.” What is “disabled stuff” anyway?
I was actually pleased he said this as it started a good debate with people who work closely with me. I explained that I cover it up uber well, but struggle with a lot of things he’d never actually ‘seen’.
3. I don’t use my disability to beat the queue
It’s funny being disabled but not having a wheelchair or walking aid. People feel they can say what they like to you or give you odd looks.
A man came up to me once to tell me that the police were checking disabled parking badges, and how much trouble I could get into. It took me a while to work out what he was talking about – but then I realised he was assuming it either wasn’t mine or I’d got it illegally.
I never use it when I don’t need to. Ever. But when I do need it, it’s a lifeline. I can still work and feel ‘normal’ rather than having to stay in or add hours to a trip. I would always give up a space or let someone use the toilet before me if they were in more need. But more importantly, I would give up any of these ‘benefits’ not to have MS.
4. I don’t use fatigue as an excuse to be lazy
I never use MS as an excuse to be lazy. In fact, I’ve probably done more since I got diagnosed than I ever would have otherwise.
When I feel well, I’m walking as much as I can, spurred on, I guess, by this niggling thought that I might not always be able to. But for every time I drag my boyfriend out on the bikes, there’s also a time when I fall asleep at the table during a date and miss a wedding or a party.
I wish I could explain to non-MSers how different fatigue is to being tired. I would be loaded if I had £1 for every time someone told me that they feel knackered too and I just need an early night.
5. Friends and family can offer amazing support by just being there
I couldn’t have done this without my family and friends. It’s been a massive change to my life, but I never forget how much of a change it’s been for them too. It’s not the same for everyone, but being able to laugh and joke about it is hugely important to me and they’ve been great at this. It’s brought us closer together as well.
Some people have changed towards me, and it’s a cliché, but you do find out who your real friends are. They’re the ones who keep inviting you out, even when you’ve cancelled on them three times in a row due to fatigue. They’re the ones who never give up.
Help raise awareness of MS
This MS week we need you to help spread the word about MS. Will you help make invisible symptoms visible?