When do you tell people you have MS?

I told you I was ill.

— Spike Milligan’s epitaph

My sons tell me that a common plot device in zombie movies, for example Resident Evil, is for a woman to be bitten by a zombie. She contracts the undead virus through the bite but, with self-sacrificing intent, doesn’t tell anyone. Later on in the film, she develops zombieism and is only prevented from spreading the disease further by being killed by someone who really cares for her. Should she have told anyone that she’d been bitten? Of course she should.

Obviously, multiple sclerosis and zombieism have very little in common. For starters, MS is not infectious and, in my experience, people with MS seldom try to bite others. More pertinently, for the purposes of this article anyway, whether and when to tell people you’ve got the disease is a much more complex question.

I’ve got my own imaginary little book of MS etiquette, which I call MSiquette, which I use to deal with how much and when I should tell people about this disease and how it affects me. And there are several different people I might tell – passing acquaintances, friends, family, partners, potential partners and employers. I can’t talk about all the issues thrown up with all these people in one article, so I’m going to limit the discussion to whether to be someone with MS in society. What I mean by this will become clear.

On the street where I live, people are very friendly. With some, I’m on nodding terms; “’Morning Joseph,” I might say and he might reply, “Lovely day but the weather people say it might rain later.” With others, the relationship is developing into friendship. We stop and talk about more substantive things – how Mabel is doing at Uni or what’s to be done about the noisy neighbours in number 36.

On good days, I walk better than on others but never well enough to get far without a crutch. I can’t hide my disability any more. On such days, people on my street who don’t know I’ve got MS, ask questions like, “What happened to your leg?” They’re expecting me to come back with something like an ankle sprain or a muscle tear. They haven’t anticipated me saying, “I’ve got multiple sclerosis!”

In conversational terms, this is like setting off a thermonuclear device. MS is thought of as a BIG disease – a horrible, progressively degenerative condition that will slowly reduce me to drooling ruin. How are they supposed to reply? I’ve put them in a very difficult position.

In the short term, they might say, “Oh! Poor you!” or “My uncle died of that.” What I risk is that the relationship might never develop beyond this. Once I’ve introduced myself as A Person With MS, should they talk about what multiple sclerosis is like or what will happen to me? The conversational space that should have been taken up by my actual life, most of which has nothing to do with MS, is now being given over to the disease. As if it didn’t take enough of my life anyway.

In the longer term, they might avoid me, not unkindly but because they don’t know how to deal with the issue – best to steer clear and get on with life. And who can blame them – most people’s lives are full up with surmountable problems that belong to them and this one belongs to somebody else.

So I choose not to be a person with MS. The little book of MSiquette tells me that they don’t need to know. So the conversation goes:

“What happened to your leg?”

“I’ve got a slight nerve problem.”

“Hope it gets better soon.”

“Thanks!”

And so I prefer a grey, utilitarian, National Health crutch to a beautifully made, hand-decorated stick because I don’t want to look like a person with a long-term disability. Again, I choose not to be someone with MS.

In denial? You bet!

Some days, MS makes me feel worse than on others. Perhaps I’m walking particularly poorly, perhaps my bladder is giving me gyp, perhaps spasticity has kept me awake half the night – you know the story. On such days, it’s tempting give the stock greeting, “Hello, How are you?” the full nine yards. “Oh, I’m so tired … my bladder is bad … pain … woe is me … etc.”

But before doing this, I have to think of the intention. Many times people are simply using “How are you” as a stock greeting. It’s a way of acknowledging my existence, much like the “Hello” that preceded it. It’s rhetorical and not an invitation to actually tell them how am I. The little book of MSiquette tells me that, in such circumstances, the correct response is “Fine” or “Very well, thanks.” This never backfires – when people actually do want to know how I am and can see that I’m clearly not doing well, I just look brave and that works for me. Better to be admired than pitied. It even makes me feel better – I really do want to be someone who lives a fulfilling live irrespective of what this disease deals me – and part of that involves failing to acknowledge as much of the disability as I can get away with.

So with all but my closest friends and family, I choose not to be a person with MS and the conversation goes:

“Hello Paul”

“Hi”

“How are you doing?”

“Really well, thanks! How are you?”

When I was first diagnosed, I was very unhappy about it and spent too much time whingeing about it to my friends. It was a mistake and, eventually, one of them cracked and told me so. He was right. How much complaining can friends, and even family, be expected to put up with? I want an equal relationship and not one where I’m the token cripple whom every one pities.

To a point, I have to talk about MS. I have to cry off some events because, for one MS reason or another, I can’t come along and it’s easier to be straight about why. What I try to limit is the complaining. I don’t know how well I manage but I do try not to be a person with MS even when I’m among friends.

Another similar situation arises when other people need space to be ill. When someone complains of, say, sore heels, it would be easy to say, “Well, that’s a trivial complaint compared with the MS that I deal with on a daily basis, so you should get over it and stop complaining!” Apart from being route 1 to losing friends, this is really not very sympathetic approach. Everybody needs to complain about their ailments and my little book of MSiquette tells me to listen sympathetically. Besides, my MS doesn’t cause me much pain and there are a lot of much lesser conditions that are agony. I can count myself lucky.

I hope you never get bitten by a zombie but, if you do, for heavens sake tell someone as soon as possible. Should you tell people you’ve got MS? Very often, I’d say no, don’t tell.

 

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2 comments on “When do you tell people you have MS?

  1. Sue Vincent on said:

    I want to thank you for the sensible and straightforward approach to MS, both on this blog and your earlier site. As someone currently going through the mill and expecting to join you on the MS side of the stream, I have found it invaluable and oddly reassuring to have information from someone who has already crossed the bridge.

    I am currently at the stage of being ready to scream at the neurologist on Monday to please look at all the symptoms together, instead of sending me to dozens of specialists who diagnose each individual problem with ‘probablys’, or chalking it all up to ‘stress’.

    So, a simple thank you.

  2. Shana Creeech on said:

    Thank you. I have tingling feet and legs, have been told that it probably is MS, I want to cry but can’t bring myself to do it yet. I guess if I cry about it then I have to believe it. So, I don’t know where I was going with this but thanks for the blog I appriciate it and much like being bitten by a zombie I think you should tell the people who count in your life (even your sort of friends) but of course not go on and on. I was out of work for 2 weeks and everybody asked me where were you and OMG why were you in the hospital for a week. I said I was getting tested for a nerve disorder. They of course want to know what the doctor said. That a slippery slope to climb, but I have told the ones who count what they say it probably is – MS. My friends have offered encouragement and I really need that right now because on the inside I am freaking out. So, I want to thank you again for the blog.

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