The Mighty Logo

How I Deal With the Guilt of Having to Put My Health First

The most helpful emails in health
Browse our free newsletters

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.

Originally published: January 16, 2020
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home