The Mighty Logo

The Part of Chronic Illness No One Prepares You For

The most helpful emails in health
Browse our free newsletters

This summer, the heat has been near record highs. For that reason, I have not really been able to enjoy it the way I used to, especially with being chronically sick. It has definitely complicated my social life. For one, I have been very ill for about a month and being around so many people has not been the smartest move.

But in my solitude, I have been able to reflect and look at the fun friends and others are having, and I will be honest: I’m a bit sad.

The one aspect of chronic illness we don’t talk about and that nobody prepares you for is the consistent solitude and feeling of being left out.

I do remember a time when my social calendar was so full and I was always on the go. Now, it seems I am lucky to go somewhere four times a year. Now don’t misunderstand, I don’t want anyone to stop living their best life, but I also don’t want to feel forgotten. I may have to pass on an invite because I’m sick or having a flare, but that doesn’t equate to me to no longer being able to do anything ever again.

I deal with this kind of foolishness every single day. And I am overwhelmed by the stress of appointments, managing medications and a pile of other things, so it is nice to have distractions from the fact that I have incurable illnesses.

I know that inviting me and then me having to cancel or not being able to accept constantly is annoying, so people stop asking — but trust that I feel guilt in all of that – in every time I have to cancel. I truly don’t want to. I don’t want to say no.

I want to put on my 3-inch heels, sexy pants and cute top and paint the town red. And sometimes I actually can do that. I may not be able to stay out long, but I can make an appearance. I may pay for it later, but I’m going to try to come have fun while I can. And other times, after I shower I am so incredibly tired and in pain that I know it’s over for any plans I’ve made.

And because I try to always remain humble, I will never say these things out loud to my healthy friends.

I will never say, “I know y’all are going out tonight, but maybe one day you can come keep me company?”

It takes a lot to ask that because I often think most folks don’t want to come sit up with someone who is sick and talk to them, bring them snacks or even watch a movie.

My hope one day is to be able to get out more and live it up again without vomiting or feeling intense pain. And hopefully I won’t catch anymore terrible infections this summer, so I can be a bit more social.

I have to remember, this is life with chronic illness, and this is my life with multiple chronic illnesses.

Each day I’m doing my best, and I hope others can try to understand this.
the author in a medical mask

This story originally appeared on Simple Little Brown Girl Jae

Originally published: August 26, 2019
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