Don’t ask, don’t tell

  I have never liked the long summer holidays. As a child in a somewhat unpredictable world I spent the summers longing for the return to school, the place where I felt safe and confident, where things were predictable and ordered. As a young teacher the summers stretched too far ahead and whilst my friends and boyfriend went to work I slumped on the sofa watching daytime TV; as a new mum everything that kept me going through maternity leave simply stopped for the summer and I was never very good at playing with my babies without an imposed structure! These days summer is marked by the rest of my little family going away for a fortnight without me, and me never being entirely sure where my friends are. It unsettles me because, as much as I can picture myself as a free spirit, ready to wake each day without a plan and see where the world takes me, in actual fact I am a control-freak entirely driven by the love of routine.

And for 35 years that routine involved new beginnings every August/September. Buying new stationary to put in a new bag, with a new big diary to write in a clear and understandable timetable – these are the kind of things that make me very happy. And when I gave up teaching for medicine I didn’t really think through the implications of leaving them behind. Medical school should perhaps have helped my transition – we did get timetables but they were often late or inaccurate or just a bit baffling (and there was no place for my big bag of stationary and huge mummy filofax amongst these young people who seem to have mastered minimalist cool.)

As a junior doctor all hope of a calm and ordered life seems to have melted away. Every four months we rotate to a different area. This involves meeting a brand new set of colleagues, negotiating the politics of a new department, learning brand new systems and trying to get to grips with exactly where you need to be when and what people expect of you when you get there. This has been even more challenging for the routine-driven me this time as not only have I changed specialities but I have also changed hospitals. Everything is different, everything is moderately confusing and the mummy filofax is bursting with lists of people I need to phone to answers questions about rotas, annual leave, computer passwords, vaccinations and mandatory training course. Everyone else seems to be sanguine about this; I flap around mildly manic about it all.

It’s enough to unsettle me at any time but, with excellent timing, this move is happening during a relapse. A different kind of relapse – my limbs are all good but I can’t really see out of one eye and I am exhausted even before I get out of bed, never mind at the end of a twelve hour shift. I haven’t mentioned it to anyone at work because I’m determined (as ever) to push on through while I can. But I wish they knew, without me actually having to tell anyone. The move has had me reflecting once again about “disclosure” of my condition. We had to do one of those things where you introduce yourself to your new colleagues and say something interesting about yourself. For a split second I almost said “I have MS, its well-controlled and not currently a big deal. But sometimes I walk with a stick and I don’t want anyone to worry unduly about that.” I didn’t because I thought it might prove a bit of a downer, but I am left wishing I had a way of discussing MS in person the way I feel able to do here.

Last night I read a blog post written by an American who exhorted his fellow “MS-ers” not to tell anyone about their condition unless directly asked. He warned of discrimination and stolen opportunities and advised that people keep their symptoms hidden if they can. He advised “don’t ask, don’t tell,” which irritated me. And while I work in the protected British public sector I am not naive enough to not realise that people do face job insecurity and prejudice in Britain when they tell of their diagnosis. So why do I want people to know??

I suppose part of it is practical. I want to be able to sit down briefly on a long ward round without people looking at me quizzically. I want to be able to rock up with my stick if necessary and for people just to accept that sometimes that’s how things are for me. I don’t want special treatment, I don’t want people to make allowances, I just want to be able to quietly adapt things without any fuss. I have not yet worked out a way of telling people without it seeming like there is a fuss to be made.

And another part of it is the reason why I write this blog. I want people to know that having MS does not stop you living your life. We all experience the condition differently, but there are more people working with MS than there are people permanently using a wheelchair because of MS. This particular “sufferer” (as the media persists in describing anyone with MS) will be attempting to walk/gently jog 13 miles in six weeks time (note: it was a really bad idea for me to decide to enter myself for this, partly because of the relapse, but mainly because it turns out I really, really dislike running!)

I think what I would would really like is to be able to tell people in a natural way, at a convenient time, without there being a tumbleweed moment or without people tilting their head sympathetically and looking a bit sad. I would like to be open about it so I don’t have to talk about it very much and can just get on with meeting the challenge of learning how to care for both tiny babies and angry teenagers, and the added challenge of trying to contact someone to book off time for INSET days/concerts/parents’ evenings and everything else that comes with the start of a new term. Ooh, a new term, maybe I can just get my “fix” through my children. So I think I will buy them some new stationary, and a new bag each, and bore them silly by asking about their new timetabes when they go back to school in just over two weeks. Can’t wait…