About the same time as I was diagnosed one of my dearest friends was diagnosed with breast cancer. Our diagnoses were, of course, very different, but we shared similar jobs of having to tell people what was happening, and help those nearest to us to cope with it. But, on a slightly brighter note, it did give us the chance to joke about weird ways in which some people reacted to “bad news.” Often people simply don’t know what to say so they blurt out anything. Both of us heard “oh God, that’s awful, someone I know died of that!”
As I have said, my immediate response when MS was confirmed was one of relief. I had a “genuine” illness – it wasn’t all in my head (well, it was but not in that way!) and there were people I could contact for help and information. So when I phoned my husband I blurted the news almost triumphantly. To this day I don’t know exactly what passed through his mind at that point but I know the next few weeks were dark for him. Before I saw his fear however I told our families, and such was my detachment (denial?) I was surprised that people kept crying. Even my big, brave dad. Reflecting now I can see how selfish I was – I didn’t bother breaking it to them gently. I just told them in a matter-of-fact way accompanied by a declaration that they weren’t allowed to be sad, or feel sorry for me, because I was going to be well and (a phrase that I still revert to) “it could have been something much worse.” I didn’t sugar the pill of phoning my best friend, whose own mum has progressive MS and had been very unwell, to tell her that my antibodies were trying to do the same thing. I became massively impatient with anyone who did what I called the “head-tilt” – I was not interested in sympathy, I made jokes about the implications of living on top of the hill for my imaginary wheelchair, I refused to talk about the possibility of medication, and quipped about buying a replacement for my knackered Mini with the “disability.” Quite honestly I might have been a little unbearable. The people I loved were trying to help and I wasn’t ready to be a person who needed help.
Weirdly, I also developed a compulsion to tell people wherever I went. When I was little my mum used to do this excruciating thing of talking very loudly about my school achievements in public (supermarket checkout/bus/post office etc etc) so people would smile, or congratulate her. I started to do something similar – even when the conversation was about something else I would blurt out the news, often to people I barely knew. I told colleagues, mums at school, even the dental hygienist. And generally they would look at me with shock or sympathy and then I would get a little cross that people were feeling sorry for me. I became ridiculously irritated when my mother-in-law told me they were praying for me at her Church. Conversely, my strongest reaction was to one of my tutors at the university. One of the things I needed to clarify was that I was able to continue on my course so I told one of the tutors and her response was “oh, MS … loads of people get that… nothing to worry about.” And I was furious – I didn’t want sympathy but I sure as hell didn’t want it dismissed. Frankly people couldn’t win. The answer was to stop telling people but I spent almost a year just telling people randomly whilst I came to terms with it myself. I am a little better now but the nature of my course is that I meet and work with new people every couple of months and inevitably something comes up – I need to use my blue badge because my walking is rubbish, or we have a lecture on MS (SO many of these!) which I try to avoid as there are only so many times you can listen to the”horrendous” things that may lie in store – and I tell more people and then watch how they react with a kind of detached puzzlement.
Immediately post diagnosis however the denial was strong. Mr C was left to navigate his emotions without me (luckily my sister and our lovely friends were there for him), whilst also listening to me endlessly talking about how things were going to be fine, punctuated occasionally with unfunny jokes about “going off to Switzerland” when things “got bad.” And then, inevitably, I cracked, and my sister found me curled on the floor sobbing inconsolably. In my heart I was crying with fear for my beautiful friend, and her beautiful daughters, and the horrible things she was going to have to endure, but in my head I knew I couldn’t stop crying because of my own beautiful children, and my brave but scared man, and the uncertainty that was suddenly ours to face up to.