Shift.ms

by Gus Alexiou

MS can obviously have a huge impact on personal relationships and there will always be a number of issues that a couple will have to work through when one partner is diagnosed with MS. As MS is often diagnosed in early adulthood however, there will also be a large number of people for whom the diagnosis arrived in the midst of being young, free and single. When the thought that you might have MS first enters your mind; a million different feelings about the future race through it. One of the most common if you are single is – will I ever be able to meet someone now and if I do, how do I tell them about my MS without scaring them off?

As ever with some of these incredibly complex issues that MS throws up, there is no golden, universal answer. Everyone’s personality is different, their situations are different, their MS is different and the kind of people they might pick as a partner is, yes you’ve guessed it – different!

Disclosure is not an issue for everyone. If for example there are constant visual markers for the signs and symptoms of MS e.g. a limp, a stick or crutch etc then it is taken out of your hands. The disease discloses itself. This can be tough. It may be nice to pretend that we live in a world where people are full of admiration for folk with disabilities but it doesn’t always work that way. In the dating game, people make fast, superficial judgements. People who have made a living out of researching and writing about this kind of stuff often agree that a potential partner makes 75% of the decision about the suitability of a mate in the first 30 seconds of meeting them, something like that anyway!

Perhaps the best option here is to calmly acknowledge that it is impossible to control or second guess the prejudices of people we don’t even know. If people do indeed make snap, superficial judgements then perhaps all you can do is create the impression that in spite of your impairment, you still come across as a very confident, engaging person. That might lead to a judgement in itself and perhaps one that would be more welcome to us.

However MS is never black and white, – what about the shades of grey? Many people with early stage relapsing-remitting MS for example suffer from all kinds of issues with fatigue. Taking walking as the easiest example, many MSers at their fully energised, well rested baseline might appear to have completely normal mobility to the naked eye. If they walk around for a couple of hours however (which is hardly an unusual thing for a couple to do) then it might be a different story. Or what about if you are out and need to run for the tube, the partner springs into action and shoots off like Hussein Bolt and gets to the carriage wondering why you are only making delicate, tentative movements. Sorry to all you MSers that can run for the tube, I just remember for me that the ability to go from very slow to sprinting was one of the first things to go because it’s a highly complex nerve function. There are other issues as well like injection marks in strange places etc all of which will ultimately cause the disease to disclose itself down the line. So it becomes not so much of an issue of do I disclose but rather WHEN do I disclose?

My advice based on opinion and experience but not expertise, would still be to leave disclosing for a bit if you can and negotiate a few carefully managed dates instead. The reason being that if you are attracted to the other person and think they might feel the same way, then it might be an idea to let everything be fun and blossom for a bit before you drop the whole MS bombshell. From their perspective, it is harder for them to walk away from someone they are attracted to and are developing feelings for then it is a person they’ve just met who tells them they have an illness. If you disclose MS from the get go, such feelings would really not have had time to develop and so they might be less inclined to even start bothering getting their head around MS. Remember they can walk away from MS, we can’t.

The other thing to remember is that dating is a two way thing. It’s not just the case of one group of people who happen to have developed an illness through some accident of history desperately hoping that someone from this larger group of people, who really only by the very same luck of the draw, did NOT develop MS, will be decent enough to “take us on”. Frankly if that is your mindset, you are on a hiding to nothing anyway. The wider point is that not having MS doesn’t make you any better looking, fumier or kinder than someone with MS. So if you just DON’T FANCY THEM all this worrying about disclosure becomes irrelevant. Also you should never feel obliged to disclose MS before you feel comfortable doing so. MS is not sexually transmissible and also it’s pretty damn private. They aren’t necessarily telling you all their private intimate secrets on date one, so why should you?

There is a place where disclosure becomes an issue for people with visible MS symptoms i.e. online. Here you can hide behind some thoughtfully composed e-mails and only your very best pics, maybe with that crutch conveniently put to the side out of shot. This is good in a way because you can build up a rapport with someone without the MS initially getting in the way. Where it becomes tricky however is again around the issue of disclosure. Perhaps you wait once communication has moved on to phone contact but even then it’s not so unlikely that the other person might just stop calling or being receptive to calls. The alternative is to arrange a date but your date is going to be confronted with visible mobility issues and if they are always there, you can’t even blame it on the alcohol! I think this is one of the few examples of where it would be unfair to the non MSer for you not to disclose beforehand. Yes it’s awkward for you too but you always knew it was going to be and can be prepared for that. Once you disclose, I think you have to afford the other person a chance to privately gather their thoughts on it all. Plus you can frame it to them that a drink is just a drink, it’s not a marriage proposal. If they liked your pictures and got on with you on e-mail and telephone, they will still have a good laugh with you in person no matter how they might feel about MS going forward.

Just remember that it’s still a two way thing, yes they will be weighing you up with MS in the mix but you are also weighing them up. You don’t change your sense of humour, favourite books and films, football team, music and how you like to connect with people just because of MS and the same is true for what you might be attracted to in a partner. Yes MS is strong but our sense of self has to be stronger. Disclosure is a big issue and one we all have to negotiate in our own way but it is not about us having to “sell MS”, something none of us chose to have, to anybody. They have got to offer something too; they don’t get a free pass just for having a better looking MRI scan.

What now?

• What are your experiences of dating and disclosing MS? Throw in your thoughts below