I recently read an article about a celebrity who suffers with a long-term health condition who used ‘positive thinking’ to overcome it. They mentioned that they were now living a full and happy life after being in chronic pain for many years.
I also have many chronic illnesses, some more serious than others. My friends would describe me as a very positive person but with the best will in the world, positive thinking can’t cure me.
Just today, I desperately wanted to spend time with my children, but I was unable to get out of bed. I tried so hard to get up, but I fell, twice. If wishful thinking were a cure, then I’d be running miles every day. Sadly, I am stuck in a wheelchair, watching life go by from the sidelines.
It has made me rethink my own language when talking about my conditions. I use the word ‘fight’ a lot but if fighting were enough then I’d be better by now. It’s the same with cancer. People don’t lose their battle with cancer, they die from it. It wasn’t from lack of effort on their part or mine. I didn’t lose my battle to get out of bed today, my body was just physically unable to.
There are very few people in this world who would choose this life. I have friends with chronic illnesses who are struggling just like me. We don’t want to be ill, we just want our lives back. I want to be able to take my children for a day out on my own, or just walk out to the local shop to buy a loaf of bread. Things that many people take for granted.
It’s frustrating to hear celebrities with an influential voice talk about overcoming these obstacles. I’m very happy to hear that they are living a better life, but I’m sure they had the help of professionals that I don’t have access to. It makes it more difficult for the rest of us to convince others that we really are trying our best. The general feeling I get from people who don’t know me well, is that if I just tried that bit harder, then I’d be fine too. Unfortunately it doesn’t work like that.
I’m sure many people have heard of the spoon theory but if you haven’t, then it is based on the idea of that we all start the day with a certain amount of spoons. A typical person, who is not chronically ill, will use a small number of spoons on each task. For example, a shower make take one and getting dressed another. Simple tasks are easily completed, and most people wouldn’t think twice about them.
For someone as disabled as I am, there are many days where I wake up with barely any spoons. Coming downstairs is a huge achievement and takes up most of my energy. Getting dressed takes several spoons for me, so I don’t usually bother and stay in my PJs! I use them wisely and sparingly, so I have can spend small amounts of time with my children.
Our language and conversations need to evolve around the issue of chronic illnesses. There has to be more understanding that we don’t want to live this way and many of us would give us anything to have a ‘normal’ life. Although positive thinking is always a good thing, it isn’t a magic wand. If only that were the case.
This blog post was first published by the Huffington Post UK here.
