There are times that you find yourself sitting in disbelief unable to take in what you are hearing. The person talking to you has been a friend for years, but they in just a few words have blown your perception of them right out of the water. A friend of mine is now amongst the millions of others out there looking for work, a few days ago I sent him my CV to look at so he could build one for himself, what returned to me was basically my CV with of course his work history. This morning he phoned again and I mentioned that he would need to write a cover latter for all the websites, he had no idea what I was talking about so I have once again sent him mine, he read it and then asked but what would he could put into his. I explained again the concept of what a cover letter is and he said it would take him a couple of days and he would send it to me for approval. This is a man in his 40’s, not a school leaver or a kid, an adult who has worked all his life and is totally lost on how to do two simple things the biggest being how to sell himself in words, a very surprising thing to hear from someone who has been a field salesman for most of his life. We all build up these images of those we know and love, but all to often the day arrives when something like this happens. I don’t think any less of him, but I can’t help feeling I miss judged him somewhere along the line. A real case of not him but me, he hasn’t changed but I am now disappointing with myself and my ability to read others.
Like it or not we all spend our lives acting out the role we think others expect to see, and how they interpret that, depends on their experience not just of you but of everyone they have ever met. Illness is no different, I still act out the role of Pamela, the one that is know by Adam and my friends and family, but I know I have changed even more than I think I show to anyone. For many years I did something that I know now was really wrong of me to do, I shut Adam out of the medical side of everything that I was going through. Once we had the diagnosis, I never again until I was totally unable to get there without his help, asked or allowed him to come to any appointment with me. I felt that if he wasn’t there he wasn’t going to be pulled down by what was discussed, after each visit I glossed it up and altered the importance and outcome. Through all those years I tried my hardest to cover it all up, to be fitter and healthier than I really was, and he played the game too. Yes he did know, not all of it, but he frequently has said he had guessed or seen through the act. We were both playing with the perception of each other, but it was how I, or really we, thought each other wanted things to be.
Even now I still find myself covering the truth with a smile, but telling him every few minutes what is happening, how I feel or where the pain is, achieves nothing, but I no longer hide the big things. It is strangely hard though to talk about the failing of your bladder and bowels with your husband, it feels so wrong. If there was ever a subject that was designed to shatter someones perception of another that is it. The day my bladder failed me totally and left me struggling to get to the loo unable to stop the flow, while he was in the house, was bad enough. To come out of the bathroom to find him cleaning up after me, well that still makes me wish I could vanish. Yes it happens, and yes it will happen again and again in the future, those a physical facts, the emotional ones rip the inside out of you.
The most painful things about chronic progressive illness isn’t the physical pain that wrecks your body, or the true restrictions it forces on to you and those who love you, it is the destruction of our and others perceptions. Who we are hasn’t changed, but our roles within our relationships change continually, as it does for everyone. But gradually on top of that, even I no longer see the fit and capable person I had been my entire life, my perception of me and others perception of me, is now that of someone who needs help continually, who is ill and who will never again be well. All the positivity and spin in the world can not change those facts, and their implications, yes I can still do a hell of a lot of things, but they are being nibbled a way at it constantly.