Dealing with attitudes to MS

Anecdotal evidence I’ve gathered from social media suggests many MS-ers have experienced attitudes and behaviour that have made their experience of MS more challenging. Feeling discriminated against, insensitive comments and simply those closest to us apparently not really understanding what we’re going through – all these things add to the burden.

I’m mentally prepared for something negative

For related reasons, ever since I’ve been parking in disabled spaces with my blue badge, I’ve felt slightly self-conscious as I get out of my car. Particularly if I’ve done little during that day and my legs are feeling fairly strong. I’m mentally prepared for someone to say something negative, like, “What are you parking there for, there’s nothing wrong with you?” The many responses that go through my head include:

•  “Would you like to try MS for the day? See how you get on?”
• “Wait here for an hour. You’ll see a different person getting back into this car after I’ve walked around ASDA for a bit.”
• Or maybe I should just go with the straightforward, “Why don’t you mind your own f*****g business?”

It’s probably just as well I’ve not had to employ any of this. All the feelings about being judged are just imaginings, I think. Folk are more educated about hidden disabilities than you might believe. Maybe I’ve been lucky, but that’s been my experience.

It can be tough to relate to people with MS

Of course, people never seem to fully ‘get it’. But without inhabiting the body of someone with MS, how can we expect others to grasp what it’s really like? It’s difficult even for us to understand sometimes, it being so mysterious and unpredictable, with so many different types of symptoms.

It can even be tough for one person who has MS to relate to someone else with MS. The problems they each have to deal with might be at other ends of the vast spectrum that is ‘having multiple sclerosis’.

So I forgive the remarks which grate. That’s not to say I don’t log each one and occasionally brood upon them, as I lie awake at night.

- “Are you sure it’s not just the years catching up with you?” (in reference to not being able to play football anymore). No it’s bloody not! Even at my age, I still should be able to run a bit.

- “Oh yes, I’ve been really tired recently too”. Yes, but you’ll be ok next week. And you’re 83. I only turned 50 fairly recently.

- “I wish you had told me you were going for a crap. I’d have got myself a pint.” (I hadn’t, it was only a number 1). Yeah, sorry. That was just how long it takes me to pee because of my bladder issues.

No, I prefer to focus on the positive reaction my condition has received ever since my diagnosis. People have been nice about it. They’ve been genuinely sympathetic. They’ve tried to understand.

A confession

Everyone, of course, has their own troubles to deal with, whatever they may be, so there is only so much attention you can expect. That’s my attitude anyway and the attention I have received has always been supportive.

As a result, I confess that, somewhere deep within me, lies a foolish part that actually enjoys having MS. It’s a very small part of my personality and the rest of me despairs of it. But I can’t deny that being a person with MS makes me feel just a tiny bit special.

Example: last summer I’d tried to negotiate the afternoon of a wedding without my stick. This made it look like the best man (me) was drunk only a couple of hours into proceedings, which probably left people a little wary of me.

In the evening, however, the walking aid came out and wherever I went, as I passed, people gave me space for another reason. It was suddenly as if I was moving easily through the Red Sea. People were getting out of the way, stepping aside, ushering me through.

And I didn’t have to go to the bar once. Drinks were always brought to me.

Who doesn’t want to feel like they’re important?

Likewise, when there’s a shortage of seats anywhere, the guy with MS is never standing for long. At my age, MS or not, a seat is always welcome. But it’s MS, not middle-age, which seals the deal.

When I go to the football, the steward tries to direct me into the car park from which it takes ages to get out again. I flash my blue badge through the windscreen and suddenly he’s standing to one side and beckoning me towards the disabled spaces from which it is much easier to fashion a quick exit.

You can’t help feeling as if you’re a celebrity, diplomat or royalty – particularly after the gateman has just waved you through without asking for any money.

It’s a strange one. You might think you want to be dealt with in the same manner as everyone else, but I for one embrace this treatment. Who doesn’t want to feel like they’re important?

There has to be some swings to go along with the roundabouts.

Read more about Andy’s story on his blog where you can also find out where to buy his memoir 'Balls to MS'.