Standing on the rooftop, shouting out…

OK, hands up.  Who actually had any idea what MS was until they, or someone they knew, was diagnosed with it?  I didn’t have a clue.  I had a vague recollection of a news article about a woman, severely disabled by MS, who went to the High Court to appeal for assisted suicide.  (I made a mental note to add ‘must be pro-euthanasia’ to my list of pre-requisites for potential husbands.)

The fact is, unless you have a reason to think about a chronic illness, the chances are, you won’t.  I have every reason to know all I can about MS, and from the start I was determined that it wasn’t something I was going to keep hidden.  After all, as well as having no idea what MS was at diagnosis, I certainly didn’t know that I was in the group most likely to develop it: female, between 20 and 40 years old, living in the Northern hemisphere.  It was probably important to let other people know.  I was also frustrated by the amount of negativity surrounding MS, and available to the world at large.  This just wasn’t me.

There is a ‘taught stigma’ attached to having MS, which is probably why many people wish to keep it quiet.  I remember having a discussion with one of my physiotherapists about getting back onto public transport following my relapse.  ‘People will help you, ‘she assured me, ‘and if they ask you what’s wrong, you can always tell them you’ve had an accident.’  Why?  Why would I make up a story rather than saying, ‘I have MS’?  After my second relapse, my Physio provided my with a couple of crutches, rather than the two wooden walking sticks I’d been given after the Big One.  Admittedly, the crutches look somewhat cooler than the sticks, and I could feasibly fabricate a story about coming a cropper on the piste.  But then I run the risk of becoming embroiled in a conversation about skiing, about which I know nothing.  Much easier just to be honest.

My ‘coming out’ with MS was probably easier than some people’s.  I was a fairly textbook case, optic neuritis (my first symptom) commonly being the precursor to MS, with 50% of optic neuritis patients going on to develop multiple sclerosis.  Family and friends were aware of my irritating eye issue, and had been privvy to the ‘50% chance it’s MS’ diagnosis.  I gave my parents this information in much the same way as I had told them, ‘I’ve failed GCSE Maths, but I got an A for Drama.’  It really wasn’t such a big deal…

By the time I was officially diagnosed (two years later, thanks to the efficiency of the NHS administrative system) it wasn’t really a surprise, to me or anyone in my inner circle who had become accustomed to my ‘spaz hands’.  ‘You have MS’, said the doctor.  ‘Right’, I replied, before jumping on a Newcastle-bound train for a weekend on the Toon.  I’m not sure if the doctor was expecting tears or what, but we were in an open-plan surgery…

Many people keep their MS quiet for reasons surrounding their career.  There is still a belief that ‘the only way is down’ for people diagnosed with MS, and consequently people fear being overlooked for promotions, or being made redundant.  In fact, some medical professionals even suggest that patients don’t mention their diagnosis to their employer.  I decided to broach the subject of my MS with my boss soon after diagnosis.  At the time I was functioning pretty normally, but my job is not the sort of thing I can get a temp agency to cover for a few days if I’m off sick.   I felt it was only fair to let him know what might be on the horizon.  When, 18 months later, I found myself paralysed and unable to get out of bed, I was glad I’d had that conversation at an earlier date.

Many MSers also have a fear of how friends and relatives will react to the news that they have multiple sclerosis.  In my experience the people who matter the most will love you no matter what, and those that walk away were probably not worth bothering about in the first place.  I have to say, I have an excellent taste in friends.

Up until my big relapse, I hadn’t mentioned my condition to my colleagues.  A few of my immediate workmates were aware, but it wasn’t general knowledge.  Once my walking deteriorated and I obviously ‘wasn’t right’ I felt it was time to let people know what was going on, to stop the ‘How many gins have you had?!’ comments, if nothing else.  I sent a group email along the lines of ‘I know you all think I’m pissed, but I actually have MS’.  What I received back was a barrage of kind, supportive and rather overwhelming emails.  I know that, work-wise, I probably have an easier time that most MSers.  Working in theatre is rather like having an extended family.  These are the people I have spent evenings, weekends and even a few Boxing Days with over the last ten years.  We’re not all clawing each others eyes out for promotion

Obviously one of the most ‘open about MS’ things I have done is start this blog.  For me, I suppose it is a kind of therapy.  I am constantly looking for the amusing or the anecdotal in my situation, which helps me through the not so pleasant times.  The blog is also a way of having a voice to dispel a few myths, and hopefully alter a few preconceived ideas about what life with MS is actually like.  The raft of negative MS info floating around the world wide web is depressing to say the least.  I felt the need to balance the equilibrium.  Finally, since starting on Professor Jelinek’s Overcoming Multiple Sclerosis programme last year, I realize that the blog has also become an important tool in spreading the message that ‘there are positive things we can do.’

A week or so ago I had a lovely email from a lady called Michelle.  Michelle had come across my blog whilst surfing the net, ‘desperate for good news’ following her own diagnosis in December.  The MS Trust website has a My Story page where people can submit their MS story and tell people of their experiences.  I left my story there last year, along with a link to my blog.  It was this that had directed Michelle here, and consequently to the OMS site, something that is still not fully endorsed by the NHS or the big MS charities

Being open about my MS is something I have absolutely no regrets about.  Apart from putting me in a stronger position (no-one’s going to argue with a woman with MS, particularly if she’s wielding crutches), I hope I am also helping to raise awareness in some small way, or opening the doors of OMS to a few more people.  I have certainly never experienced a negative reaction to my having MS.  A couple of over-reactions, maybe, but this is the theatre, dahling…

There are times when I wish I had told a little white lie about my multiple sclerosis, such as when the 420^th taxi driver asks, ‘What you been doin’ to yourself darlin’?’ and my response triggers an hour long monologue about that time his mother was on crutches, or his mate’s wife who has the same thing and who gets marijuana off a bloke down the pub for it.  ‘You wanna give that a go.’  But for the main part I feel that honesty is the best policy.  As I’ve been blessed with this affliction I might as well do something useful with it.