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…

Happy Belated sister day

Apparently it was National Sister Day on the 3rd August and I’m afraid to say I missed it. Coincidentally I did spend it with my adult sister drinking cider and laughing so that’s good. My littlest sister gets to have a more exciting end of August as she turns 16 on Saturday AND gets her GSCE results tomorrow. Those of you with siblings will know that, for ease, people will insist on categorising you as the “clever one” or the “funny one” in the family. Indeed I was the “clever one” for a while (along with also being the bossy one, the organising one, the stressy one etc etc) Being the eldest of five means the latter personality traits are inevitable, or so a Facebook poll told me the other day.
Anyway, given my advancing age, the holes in my brain and the intellect-eating fatigue that affects every parent of young children we can all safely say that littlest sister has, deservedly, assumed the “clever one” label. She is also beautiful, popular, kind and caring and I am blessed to have her in my life (as I am blessed by all my other siblings.) She wants to be a doctor and she will be a brilliant one I have no doubt.

And now I can tell her what being a doctor is really like because I have completed my first fortnight. I am still standing and haven’t, regardless of what the media leads you to believe about ALL new doctors, made any fatal mistakes (although I admit to lots of small ones.) And I haven’t told anyone on the ward about my MS which is a bit new for me. HR know, the car park office know (hurray for energy conserving closer parking) and my senior supervisor knows but I thought I might just not tell my new colleagues. Let them get to know the real me rather than the me seen through pity spectacles. And it’s working. They seem to like me. Apparently I am cheerful and energetic (!) I am particularly good at admin, doing as I’m told and maintaining a thick skin when being shouted at by other medics and so far that seems to be my role as a junior doctor. And I love it. Today I told a patient I would come to work even if I didn’t get paid, although I didn’t add what a relief it is to FINALLY be earning again.

Last week I almost fell back into the blabbermouth trap again – I was treating a patient who happened to have MS who was telling me all about Disease Modifiers and her typical symptoms and her day to day life with the condition. Too many times I had to stop myself from saying “me too, me too.” But it has struck me that, as a medical student I could naval gaze about my condition and tell everyone around me about it in the name of “education.” But now my role is different. None of this is about me anymore. My background, home life and medical history may make me an empathetic and holistic provider of care (I hope so) but the patients don’t need to know. They need me to be smiley, competent, kind and effective … to not hurt them when taking blood and to not nick their chips at dinner time.

Tomorrow my sister will listen to the news programmes tell her that her achievements aren’t as amazing as they will be because the exams are getting easier (nonsense). She will then probably enter medicine via the “traditional” route (as opposed to the midlife crisis route I chose.) She will do science A levels (yuck) and grab every opportunity to enhance her CV to convince someone in an office somewhere that she is a well-rounded person. She will need perfect grades, work experience, to cultivate outside interests and find time to read newspapers at the expense of slobbing in front of the TV and hanging out with her friends. She will cope with the pressure but I shall watch on, saddened, just as I was as a teacher by all the unnecessary pressure we put on our young people at a time when they should be spending time just becoming adults. I can’t imagine how I would have coped with the hell that is AS levels – the extra exams thrown in just when you thought you had earned a whole year without them. But she is energetic and driven and will compete with all the other ambitious, clever young people her age to get to pursue her dream and will go and live life as an undergraduate medic with time to study, party and meet new people. She may end up being one of those young women who now ask me “how do you do it? How did you manage studying with children and how will you do this job with children?” And I will look at her, as I do at some of them and say “you have battled to get this far. The world is still your oyster and life can be what you want it to be. Keep pushing for what you want because who says you can’t have it all.”

Happy birthday H, and whatever happens tomorrow we are all massively proud of who you are and what you will be.