Wednesday 30 April 2014

An unfair share of the cake?

So I've just caught up on Newsnight from last night as the inspirational Kris, founder and CEO of CoppaFeel!, was discussing living with cancer and the importance of awareness and early diagnosis.

It was during this interview that Jeremy Paxman asked a question which really struck a chord with me:
"Do you feel that because cancer makes a talismanic, terrifying impression on people that you somehow have an unfair share of the cake?" 

Before I say what I am about to say, I want to make it clear that I am not trying to take anything away from the seriousness of cancer and the devastating effect it has on a person and their family and friends. My grandpa lost his life to lung cancer eight years ago and I wouldn't wish what he went through on my worst enemy. I'm also not intentionally singling cancer out - it's merely an example and I could just as easily use several other diseases in it's place. I'm not trying to compare my condition to cancer, or any other disease for that matter, because they are all terrible in their own right.

In his question Jeremy Paxman was referring to the funds that cancer charities receive, but my frustration lies more with the perception of my disease. Everybody knows how awful cancer can be. People hear the word 'cancer' and instantly fear the worst, or feel sorry for you if they find out you have the disease. And quite rightly. But when I tell someone that I have rheumatoid arthritis, their reaction is usually to either question whether I am 'too young for that', or to brush it off as insignificant, or both. Perhaps it is because everyone knows that it is possible to die from cancer. Few people know that it is possible to die from rheumatoid arthritis, whether it be from complications involving the immune system, or treatment, or because the disease can affect the heart and lungs. Or perhaps it is because people automatically focus on the word 'arthritis' and the connotations that come with that, such as it being 'a few aches and pains' or it's supposed association with the elderly. People don't realise the extent of the pain sufferers of the disease, like me, go through on a daily basis. I have pain every day. I dread waking up in the morning because I know that the pain is going to be worst at this time of day. I fear the simplest of every day tasks that most other people take for granted, such as opening a bottle of Diet Coke, getting in and out of the bath, or changing my daughter's nappy, because I know how much pain it is going to cause me. I have to make choices such as deciding between being in constant severe pain and risking further joint damage or taking medication which makes me vomit and lose my hair. And on top of all that I have to cope with the constant, extreme fatigue that the disease inflicts. The worst part of it all though is that there is no cure; I will be living with rheumatoid arthritis for the rest of my life and inevitably have many more hospital visits, treatments, and operations ahead of me. And yet I am one of the lucky ones; I can walk, have very few visible joint deformities, and have so far been able to lead a relatively 'normal' life.

Whatever the reasons, the fact is that to this day many people still do not take the disease seriously, and for that reason I find myself being envious of cancer's share of the cake.

Here is a picture of a cake, for no reason other than the fact that I like cake.