‘So, is that what you’ve got? MS?’ He was new to the group and we hadn’t had that conversation yet.
‘Yep.’ I gave him that wry, weary smile. If you have MS, you’ll know the one.
He leaned down to scratch his staffie cross behind the ear. ‘How long have you had it?’
‘Going on 30 years.’
‘It’s a problem with the nervous system, isn’t it? Damage to nerve cells? Do they know what causes it?’
‘Not really. Lack of Vitamin D, poor gut health, maybe Epstein Barr virus. It’s still a bit of a mystery.’
My ratbag terrier trotted up, bright-eyed, gripping an orange ball. I wrestled it from him and chucked it away. He raced off after it, a ridgeback, a mastiff cross and Dean’s staffie cross in hot pursuit.
‘Sorry, I don’t mean to pry…’
‘No! I mean, don’t be sorry! Ask away.’
What a relief it was to have someone openly curious. I’m sure that people are often curious—I would be, if I met someone with an obvious infirmity. If I hobble in on a stick and almost fall on you, well, it’s pretty obvious something’s up.
So what’s going on? Is it political correctness? People think they should treat me just like anyone else? Do they assume I’d prefer not to talk about it? Are they just being polite?
Sometimes strangers assume it’s an injury. ‘What have you done to yourself?’—in a faux-accusatory tone. But when I tell them it’s MS it’s usually the end of the conversation. Maybe I should make out I did it skiing.
It feels like that old elephant in the room. As if I’ve arrived with an unsightly or embarrassing injury or defect, a black eye perhaps, or a huge boil on my chin, and there’s an unspoken, general agreement: let’s not go there.
But Dean, heartened, was on a roll now. ‘Is it painful?’
‘It can be. There’s neuralgia—that’s nerve pain. But there’s secondary pain too, like from muscle spasms.’
‘Can they cure it?’
Purely from a selfish point of view, I want people to understand my condition. I want them to have an idea what my limitations are—and what I can do, thanks. I don’t necessarily want to bail up every new acquaintance and give them a list of my symptoms and current requirements. Sometimes people know about MS already. But if they don’t, and they’re interested, I want them to ask.