Monday, October 26, 2015

Grieving For Who I Once Was

My Medical Team at University College Hospital London

One of the most un-spoken about and little understood emotion that a chronically ill person undergoes, is grief. We grieve for the person we once were, the things we can no longer do, the jobs that gave us titles, the roles we played in our family, the friendships we had, our ability to do things for ourselves, and the loss of a future that used to contain hope and something to look forward to. It can take months and years to come to terms with who we are becoming as we lose one thing after another. The last things we lose are our family and our friends. We are left behind while they continue on with their lives. One of the cruellest things I was ever told was, “We have a life to live. We can’t put it on hold for you”.

It has taken me years to understand that others are reminded of their own mortality when they look at me and it frightens them. And they leave you behind because you are no longer playing the game of life.

People have pre-conceived ideas about illness. You either get sick and then you get better, or you get sick and you die. If you do not fall into one of these categories, you become misunderstood and at worst criticised for malingering. Acute illness is understood. Chronic illness is not. And while all around you people are misunderstanding what is going on, you continue to lose more and more, and you grieve more and more. Kubler Ross’s widely accepted stages of grief are denial, anger, bargaining, depression and acceptance. I have been through all those stages, not necessarily in that order, but I have experienced them all. When I got to the acceptance stage is when I started re-making who I am becoming now. There can be meaning in life, no matter how much you lose. We need to find what makes us really happy, or find why we were born. It is one and the same thing. When you know what makes you happy, you can then work around what you are able to do and when.

It takes months and years to get to the point when you stop grieving for what was and realize that this is the moment, that this is the only moment that counts, and you being to fill this moment with what you love to do. You can now re-design yourself and your life. You are going to have to do this all on your own. The folk around you won’t be able to help you. No psychiatrist or psychologist will be able to assist. Only another who is suffering from the same debilitating, chronic and often life-threatening illness will know what it feels like to lose everything you once held dear, and the hard work it takes to give your life meaning again.

And even when you think you have made it through the grieving process, something will happen to remind you of who you were and suddenly you are overcome, once again, by waves of grief. It is OK. It is always OK not to be OK. Just be yourself – no more can be asked of us.