It is an unusual dilemma but nevertheless a real one. I have multiple sclerosis (MS), but it hasn't visibly affected my day-to-day life. To use the analogy of Aids, I have not yet developed the full-blown symptoms. So should I tell anyone?
Five years ago I walked out of hospital with an MS diagnosis and wrestled with this problem. I remember thinking I could get away without telling people at least in the short run, but then the doubts set in. Would I be creating more problems for myself in the long term by keeping quiet?
After some months of indecision I borrowed an idea from the gay rights movement and decided to 'out' myself. I didn't exactly start a whispering campaign against myself or put up fly posters. I just told as many people as I could that I had MS. In theory, telling people should be easy. We're all obsessed with health. We buy magazines devoted to the subject and pop vitamin pills by the bottle. Sadly, attitudes to ill health lag way behind our attitudes to health.
In fact, they're hardly attitudes at all - just a series of prejudices. You know the sort of thing: if you're ill you either get better or you die; you're either ill or you're not ill; and, most importantly, if you're ill you should look ill.
Health may be a complex issue for most people, but illness is simple. The problem, of course, is that illness - particularly something like MS - isn't simple. To start with, it's notoriously unpredictable. In many people, it's a relapsing and remitting condition where the symptoms come and go. It also differs remarkably between individuals, and even changes over time.
And then there are the symptoms. Many of my own problems - bladder control, numbness, even eyesight problems - aren't always very obvious. So the likelihood is that unless you use a wheelchair or a stick (and I don't) you won't look as though you have the disease.
In many ways, people like myself are victims of the very medical technology set up to help us. Improved imaging equipment has meant that diseases like MS, which previously remained hidden until their more advanced stages, can now be diagnosed earlier. Young and middle-aged people, in their thirties and forties and relatively unaffected by the disease, can now be told that they have MS early on in their illnesses.
So how do you explain all this to people like your employer? Obviously it makes sense to tell your boss, but it's not always easy, particularly in an age of short-term contracts and casual working. There's always a nagging doubt that employers may use something like MS as an excuse to get rid of you - however much the company blurb tells you it's 'positive about disability'.
And those changing jobs may find the situation even more tricky. Increasingly, application forms don't ask for details of health or disability, preferring to deal with this as an equal opportunities issue rather than as part of the selection process. The onus is on the prospective employee to raise something like MS at an interview or in an application form - but this is hard when you're trying to 'sell' yourself, and can be complicated if your health problems aren't self-evident.
I soon discovered that telling friends isn't easy either. There's never a good time to break the news and, far from being a conversation starter, MS is the sort of subject most people cross the road to avoid.
It became clear that many people were unsettled. Faced with a seemingly healthy-looking man telling them that he had MS, many would just shake their heads and tell me with great authority: 'Oh, you don't really have it.'
Some people reacted in an indifferent way, as though they couldn't quite take in what I was telling them. Others were more hostile and ask: 'Why are you telling me this?' Which I suppose begs the question: why tell people if you don't have to?
Well, it wasn't because I was seeking help or sympathy, or even because I felt I 'owed it' to people to tell them. It was more simple. Looking back, I felt it was easier to be out of the 'closet' than in it. Being able to talk about MS would be a measure of my coming to terms with it. If I could hear myself talking openly about it, then I would be reconciled to the fact that I really have it, and that it will probably have a profound effect on my life. If I kept quiet, I was like many of the people I met: in denial.
But there was also another reason. After diagnosis I read a great deal about the illness. One of the more surprising facts was that in many cases MS is less severe than advertising campaigns and press coverage typically portray. I hoped by telling people, by showing them I was an ordinary-looking person with MS, I would be challenging people's preconceptions about the illness, preconceptions that see MS as a swift and inevitable decline into a sort of vegetable-like condition terminated only by death.
Five years after diagnosis, and after much soul-searching, I have now told a large number of people, although my early enthusiasm has diminished slightly as the years have gone by. I still think openness and education are worthy goals, but sometimes I ask myself how much I have achieved.
Hopefully, I've shattered a few myths in the eyes of a few people and shown a few others another side of an illness that has an unremittingly bleak and negative image in the public eye. But it's hard to change deep-seated attitudes.
Last year the Multiple Sclerosis Society launched an 'MS Awareness Week' aiming to highlight the unpredictable nature of the illness. I like to think I have taught people another fact about that unpredictability - that it's not always possible to say, just by looking at people, who has MS and who hasn't. It may be a small contribution to educating the world about MS, but I think it's an important one.
A series of Multiple Sclerosis Society leaflets, A Guide To Staying In Work And Employing People With Multiple Sclerosis, are available from the MSS Helpline: 0171 371 8000.
The MS Survival Kit (video and literature) is published by The Rural Media Company, contactable on 01432 344 039. Rural Media
