Blogging about some of the ways that having a chronic illness has affected my life seems so uncomfortable. I think the problem is in day-to-day life I try not to focus on it. When you do, the word “should” tends to come up a lot, and that’s probably one of the most dangerous words in the English language.
I can use that word a lot. I should have achieved x,y and z in my career. I should be married. I should own a home and have children. I shouldn’t be forced to live in near poverty to ensure I can get access to reliable healthcare. I shouldn’t have to constantly worry about the many things I worry about. Should, should, should – the list could go on and on.
The thing is nothing is achieved by dwelling on the way things “should” be. The fact is, things are the way they are. You have a choice every morning. Are you going to focus on what should be, or find something about what is that you can be happy about (yeah, I know, some days that’s harder than others.) That isn’t to say one shouldn’t identify problems and advocate for solutions, but you can’t live there all the time.
As a result, I tend to put out of my mind what to others might seem like obvious major issues because if I thought about them too much, I wouldn’t be able to enjoy what is in my life.
Consider that the disclaimer for future blog posts reflecting on living with chronic and rare illness. It’s not a whine fest – really – it’s more an exercise to organize things in my own mind for the benefit of the film project. If I’ve worked it out in my brain, I’m more likely to come across better in future interviews, presentations or filming.