It’s hard to know what to say when someone is diagnosed with something like MS, and even harder to know what to say when they complain about their symptoms which invariably aren’t visible.
Even harder still, it depends on who you’re talking to. When met with a blank expression from someone who clearly is searching for the right words, I generally tell them “it’s ok. You can say it. It’s shit.” Because it is. But not everybody would be comfortable with something as blunt as that.
Sometimes people say exactly the wrong thing though, which for some people can be really upsetting. On a personal level, I find it at worst, annoying. I’d like to think I’m quite forgiving with stuff like this as I’m just as awkward in these situations. I get that most of the time people don’t mean to offend or upset. It is so hard to search for the right words and (almost) everything actually does come from a good place. In my experience, people are just trying to make you feel less alone.
Some of what is written below, I’ve heard myself, whilst others have been said to friends that I’ve made in the MS community. To protect the innocent and for consistency, I’m going to write them as if I experienced them…
1. “But you look fine!”
In my opinion, this is the most annoying out of all of the things that people say. Someone, somewhere started spreading vicious rumours that to have a chronic illness, you have to look sick. But many MSers do look fine. This is kind of the point of invisible illnesses. I look alright but I might not feel it and when you have an invisible illness, there is virtually no correlation between how you look and how bad you feel.
2. “I know how you feel”
No you don’t. I can categorically say that you have absolutely no bloody clue. Even someone else with MS might not know. This one tends to crop up most when you complain about feeling tired. I’ve said it before, a few extra hours kip and an early night won’t fix me even though it’ll probably sort you out.
3. “I know someone with MS too and they’re absolutely fine!”
But are they really fine? MSers are renowned for putting up with the pain, fatigue and everything else. Putting on a mask. If they actually are ok, that’s brilliant but MS affects everyone differently and it doesn’t mean that I’m fine.
4. “I know someone with MS and they’re really not good…”
I know that you’re trying to give me sympathy by showing how sympathetic you are to that other person. But let me be frank. This is as bad as, if not worse than telling me about the person you know that you think is fine. Trust me. If you have MS you know what your fate might turn out to be. We don’t need you to remind us.
5. “I heard about this cure in the news…”
The day that stem-cell therapy was in the news was a nightmare. I’d not long been diagnosed and so many people (with all the right intention) contacted me with this great new cure. It’s not a cure and in fairness, I blame the news for more or less selling it that way. MS still has no cure. It has therapies that can modify and slow down the disease but only if you have relapsing MS. Know your audience and get your facts straight.
6. “Can I catch it?”
Nope. Don’t worry. You can share my air without fear of ending up like me. Surely there’s a better way of asking this question. Like, I don’t know, “how do you get MS?”
7. “At least it’s not cancer”
I don’t even need to tell you why this is not ok do I? Incidentally, I found out about this one through someone else, who not only had MS, but she did have cancer as well. I dread to think of what the other person said when she dropped that bombshell.
8. Are you going to die?
Well are YOU going to die? And no, you can’t have my stuff.
9. “I know this great product…”
I don’t like to swear in my blogs but sometimes it warrants it. JUST FUCK OFF WITH ALL YOUR HERBALIFE AND JUICE PLUS SHIT! It’s not going to help the Average Joe never mind me and my chronic condition that’s a mystery to some of the smartest people I’ve ever met. The thing is, some MSers are willing to try anything. Please don’t prey on their vulnerability.
10. “You’re lucky not having to work!”
This is just a real case of foot in mouth isn’t it? It’s up there with, “but you get to park in the disabled bay” and “I’ve always wanted a go in a wheelchair.” You know what? You can have it all but take my MS with it please. Not so appealing now huh?
11. “Just as well you don’t have children!”
Erm why? What does this statement even mean? If you’re referring to the fact that it’s selfish as I might pass it on, you’re wrong. It’s not hereditary. If it’s because I’m too tired to look after kids properly, then that’s also unfair. MS doesn’t automatically make you an unfit parent. Also, just consider before you say this that someone might want children but because of their fatigue levels or because of the treatment they’re going through, it’s not right for them to have kids right now. Or they just might not be able to conceive for completely unrelated reasons.
12. “Are you drunk?”
Hahahaha! I wish I was. Some side effects of MS mean that you slur your words or you stumble about. I was once asked this before I knew that I had MS. I was having a relapse and I looked like the local drunk. It was awful. This is something that is more likely to be said to you whilst suffering a relapse or flare-up, by someone who doesn’t know what you’re diagnosed with.
13. “It’s like when I had…..”
See where you’ve said “had”? As it currently stands, I can’t talk about when I “had” MS. For the foreseeable future I won’t have the pleasure of referring to it in the past tense. And most of the times I’ve heard this phrase, it is absolutely nothing like that time you had the Norovirus.
14. “You’re so brave!”
I don’t really see that I have a choice. Being told I’m brave can sometimes make me feel great. A lot of the time it makes me feel awkward. I don’t know how to respond to it. It can make me feel like I have to live up to that and I end up not allowing myself a bad day. Because you know, I’m brave and stuff. Brave people don’t have full-scale melt downs.
In all seriousness, I think there’s a lot of valid questions and statements here which you might want to know the answer to if you don’t know much about the condition. It’s actually nice that people care enough to ask. The bottom line is you need to know your audience. If they’re a sarcastic little toerag that is quite happy to take the mick out of their condition like I am, and we’ve got a great relationship, chances are you’ll get away with a lot of the above. If not, I will always welcome questions. It’s natural to be curious. But there’s a way to do it. And asking whether I’m going to die anytime soon is probably best kept for Google…