Living with a chronic illness is something that has managed to impact every single aspect of my life. It crept into areas where I didn’t think it could possibly have a place. From what I choose to do with my hair to what I write about now, even my imagination and creative outlets have been influenced by the illness that completely changed my life seven years ago.
So, as I laid in bed last night in the middle of a flare-up, I couldn’t help but analyze why I feel so much guilt when I have to look after myself to the detriment of my “normal” life that I try to present — whether at work or with people who don’t know me that well. I couldn’t sleep due to how much I ached; even when my boyfriend put his hand on my back to try and comfort me it stung on my super sensitive skin. I knew full well that I was in no fit state to attend work; I didn’t have the energy to get out of bed let alone stand in front of a class to teach for an hour. I had a text from my mentor telling me to look after myself and to not rush back to work if I was unwell.
So why do I feel so much guilt for having to put myself first?
I think there is still a part of me that refuses to accept that I will never have what most people would deem as a “normal.”
Even though I will swear until I’m blue in the face that being “normal” is no fun anyway, I think my guilt comes from thinking I can live with my kidney issues, chronic fatigue and anxiety and still do everything I want to do.
Sometimes I need to remember that I am not in fact a superwoman.
It may have taken me being awake until 1 a.m. last night, but it made me focus on a few things I need to work through, and I thought it was probably something other people will understand.
1) I need to stop putting pressure on myself. I cannot continue to lay in bed thinking that I am letting people down because I am not firing on all cylinders or because I am truly ill, and I need to take the time to look after myself. I can honestly say that if I went to work when I am at my absolute worst, I would not be in any fit start to teach anyone. I doubt I would even make it through a lesson.
2) It is OK to feel overwhelmed. As much as I tell myself I have had seven years to get used to the new way I have to live, it is more than OK to let myself be overwhelmed at times and not know which way to turn. I would not be human if I didn’t stop every once in a while, and think “Oh God, things can be really bloody hard at times.”
3) I am allowed to be a different girl to when I was diagnosed. When I talk to people who didn’t know me before all this started, I find it hard to grasp the fact that they will never know me without my illness. It’s scary. Recently, someone I worked with told me I was “stoic” and she was “proud of me.” Whereas in my head, I thought I had been useless and was just still the bumbling, accident prone girl I had been at 17. It just proves that I am a different person now and people perceive in ways I do not see.
4) I am never going to be 100 percent healthy. I never truly mourned my health. When I came out of hospital after I was first diagnosed, I thought this was going to be over as quickly as it started, and I would go back to being happy-go-lucky and worrying about the little things. I was wrong. By the time I realized this was going to have more of an impact on my life than I first thought, it was too late and my whole life was changed. I am never going to fully rid myself of this and my life really has changed.
5) It is OK to want to escape. I spent a long time feeling guilty for needing my own outlets to escape from the issues I have to face. I thought I was being a coward not facing how I felt head on, but then I realized everyone needs a break sometimes. For me, it’s writing and throwing myself back into the “Harry Potter” series (something I did as a child to escape and still helps me). It is OK to just need to get away from the medications and the pain – no matter what you choose to do.
How do you deal with feelings of guilt as someone with a chronic illness? Let us know in the comments below.