Telling people is hard. Now I have an official diagnosis, I no longer want to hide this. People in my life have been asking if I have had any results from last month’s hospitalisation. Well, some people. Because I actually look well, and no one can see the numb foot, it is all but forgotten to many. I can more or less divide the people in my life currently into two camps – those that keep asking and those that don’t. The trouble is, those in the fomer camp are, by definition, the hardest to lie to and the hardest to be truthful to. The very closest people to me know already – parents, best friends (the Inner Circle – those that were the kind of friends that I could text from my hospital bed with a “please bring me…” list). But the Outer Circle – the people who I care about enough to not want to sadden them, to want to think carefully about what to say and how to say it – they are still many.
The teacher in me wants to …needs to… make sure the information is pitched just right, differentiated appropriately, conveys the right message, does not strike fear but doesn’t make light of it. Actually, if I cannot achieve this perfect balance along the continuum of gravitas then I would rather err on the side of light-heartedness. The hardest part of telling people this news is the looks on their faces; watching them upset and knowing that I am causing this. I want to make it easier for people. I want to say (and in some cases I have said this exactly), “Ï have Multiple Sclerosis, but it’s fine. I’m fine. I have a numb foot and that’s not so bad is it? In the grand scheme of things….”
I have researched – or tried to – what to tell people, how to explain this condition in simple terms. But it isn’t really a simple condition, so I find myself falling into the trap of over-informing, drawing diagrams of nerves, scribbling out the myelin coating and doodling arrows from brain and spinal cord, only to cause more confusion, if the looks on the faces of my audience are to be interpreted…
My favourite explanation, after much juggling of component parts, has settled down to something like this:
“My immune system gets confused and attacks my Central Nervous System (that’s the brain and spinal cord), eating away at the insulation. This makes my body not get the messages it needs, which makes bits not work. I am…” [this is my killer line – my “seeing the funny side and tackling this diagnosis with humour” punchline ] “I am literally getting on my own nerves!” Cue nervous giggle, awkward moment, fumbling for what to say next…
My approach at this point, as I see the myriad un-askable questions flash through people’s minds, pausing just before reaching the mouth in a show of social convention, is to pre-emptively answer their un-asked questions. No, I am not certain to end up in a wheelchair. No, it is not terminal (average life expectancy for someone with MS is about 5-10 years less than the general population – hardly worth mentioning). No, I am not in any pain – lucky me! Break into smile and wax lyrical about how it could be much worse and I am lucky really, relatively speaking… end on a positive. Always important to end on a positive. Then ask about them. The relief on their faces is palpable. The burden of what to say next can be seen to visibly lift from their shoulders.
It is hard to tell people. But I am starting to think it is actually harder to be one of the people being told. And that makes me feel bad.