I did it because I thought I could get away with it.
The diagnosis was, after all, pretty marginal. The symptoms mild. The initial investigations took place half a world away in the hospital consulting rooms of New Zealand’s most irrascible neurologist. Even as the shock of a suspected sports injury turning out to be something much more serious subsided, it left me at least with a still-credible cover story. I had started this thing alone, and now I was back home I could keep it that way.
I thought I could get away with it. And I did. It was over a year before I told my family I had MS.
I can nobly pretend of course that I wanted to spare them the worry. In truth it was more about sparing myself, both from the difficulty of the telling and the impact of their reactions. Might watching them collapse emotionally puncture the state of blithe denial I was managing to maintain? Might naming MS in that way let its seriousness in?
It was fear of reactions that stopped me letting my friends in on this situation until long after diagnosis too. The fear, among a group of successful young people of becoming ‘the ill one’. Of walking into a pub and the room going quiet, friends nervously staring down into their drinks. It offended my natural (albeit Canute-like) resistance to change. I did not want this to change anything.
Though of course everything was changing.
An early, shocking demonstration of that was my first post-diagnosis christmas. It looked for the world like the best christmas our family had had in years – everyone there, thoughtful hand-crafted presents, lots of warm feeling and me going mad in the corner, conscious only of the massive barrier I had put up between myself and them. I sat and watched Christmas taking place from the other side of it. I vowed this was something I couldn’t repeat, though with Christmases not coming round that often I could get away with it for a while longer.
With friends and flatmates it is not so easy. Their geographical proximity and the manner in which they are woven into the fabric of your daily life means they see how you really are; bear the brunt of your unexplained moods. I had told two or three close friends early on, independently of each other. People with whom I could release a bit of pressure if I needed to. But it was the approach of my 30th birthday and the memories of Christmas 2005 that prompted a wider, utterly exhausting round of coming out. There was to be no barrier, no dishonesty on that day.
By late 2006 I was much better anyhow. Symptoms were in abeyance, I had returned to sport and I was physically, demonstrably healthy. This made it easier to tell my family when I finally did that year. From a position of strength, a position of denial still perhaps, but one that made it easier. Easier helps.
A very short diary entry for the day I told mum*
She surprised me. It was as if she already knew.
Nobody crumbled. Nobody panicked. Nobody looked like they were already lowering me into my grave. I realised immediately I had done family and friends a massive disservice by ever fearing it would be otherwise. That I had done myself a disservice too, in cutting myself off for so long from the support that friends and family could give. Wanted to give. But the desire to protect yourself can be strong I suppose, especially when independence is your default state of being.
And perhaps there is a degree of processing, a degree of grieving that you must always go through alone. Reading Joan Didion’s The Year of Magical Thinking this year I recognised the practical sense she also saw in a 1920s book dealing with the etiquette of grief. For the grieving:
Persons they normally like, they often turn from…No one should ever be forced on those in grief…Although the knowledge that their friends love them and sorrow for them is a great solace…none have the right to feel hurt if they are told they can neither be of use or be received. At such a time, to some people companionship is a comfort, others shrink from their nearest friends.
I exist now in what I call the open secret state. Those that need to know, know. Those who don’t, don’t. Those who ask, I tell. And there are many more people now with whom I can talk more openly about this. I openly, quietly, unflinchingly write about it on these pages. Mental life is better. If not quite reconciled, not quite wholly out of denial perhaps, I have reached an accommodation of sorts with MS, and with the openness it requires.
Which is for the best. The encroaching symptoms are making my secrets and half-truths harder to get away with. This open secret state prepares me for the time when I can do so no more.
*Five years ago today, I have just realised.
