When You Can’t Do Everything You Want Because of Your Chronic Illness


In living with a chronic illness you may be well-versed in hearing phrases such as:

“It could be worse…”

A meaningless statement designed possibly to cheer up the patient by reminding them there are always people worse of than themselves. A flawed piece of logic I’ve never quite understood. Living with a chronic condition, pet peeves like these are positively abundant.

A rich and plentiful vein of these daft phrases flows through the arms of the un-sick and I’m not sure where I’m going with this analogy but what I’m saying is there are lots of them.

One of the most infuriating for me personally (and one I’ve found myself guilty of using once too often) is “You can do anything you want!” illness or not.

“Be who you want to be despite your illness!”

“Reach for the stars!”

“Climb every mountain!”

“Baby you’re a firework!” Etc. etc.

These phrases of supposed empowerment, encouraging the patient they can live the life they did before their disease struck, simply aren’t always true.

Certainly not in my case; I can’t of course speak for all of you (although I am Scottish so I can most definitely speak at least 500 times the speed of most of you).

It would be wonderful if we could all follow our dreams and dance the night away and eat endless amounts of cheese without fear of repercussions, but it’s just not doable.

Sometimes, for example, I want to have some breakfast, then get on the bus to work without fearing I’m going to explode from any available orifice at any given moment.

I can’t.

I have Crohn’s disease and am filled with dread and anxiety every time I know I’m not within spitting distance of a toilet. That fact alone stops me from doing lots of things I’d like to do.

I’d like to be able to go to work without worrying about being fired if I need to go home sick.

I’d like not to sit in the middle of the office and have to time my conversations in unison with my bowels so I can complete my work before I have to dart to the toilet and/or vomit.

But I can’t.

And all of that is OK, it really is. It’s my life now and I’ve learned to adapt. My body is constantly changing and my disease is a part of me I really can’t ignore.

I did for a while feel a massive amount of anger at having this disease. I still do from time to time. I get frustrated at the fact that my illness does stop me doing things I want to. I then get doubly-frustrated at the fact that magazines, articles and fellow patients often lead me to believe I allow this to happen.

I don’t. The majority of us don’t.

I don’t ever lie down to my illness and let it rule my life. I do lie down to those moments in which I need to lie down, so I can have more of the moments I want. A means to an end. I look after myself when I can, instead of pushing myself at every opportunity to spite my illness.

This illness is inside me. I can’t understand why fighting against your own body is perceived as productive.

Adapting to your life with Crohn’s disease or any other chronic illness is very difficult. It’s a constant challenge and a constant source of frustration for the patient and everyone around us. Our illness affects every aspect of our lives, and we don’t need to be berated if we choose to take it a little easier from time to time. If you have ever tried to squeeze sickness into your life you will understand how much precedence it can take. Allow it a little room and leave some for yourself to do what you want.

Unless what you want is to run a marathon followed by a dance-a-thon followed by a cheese-eating contest in a building without toilets.

woman making fist and holding up arm
The author, Kathleen

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.


Find this story helpful? Share it with someone you care about.