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The Part of Chronic Illness No One Prepares You For


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