To My Friends Who Don’t Understand How Illness Affects My Social Life

Dear friends and loved ones of those with chronic illness,

I’ve been struggling with chronic illness for about three years now. I had health problems before, but three years ago they began to take over my life. Ever since then, I’ve been on a slight but steady decline. I used to go out with friends a lot (even just to hang out), but going out slowly became something that wasn’t worth the reverberation. 

My friends began to say things to me like, “I would’ve invited you, but it doesn’t start until 11 at night.” I couldn’t blame them for not inviting me; it really would’ve been a waste of their energy. It’s not like I would’ve gone — 11 is way too late for me to be arriving somewhere. Many people my age (I’m 22) go out at 11 or even 12. I try to be asleep between 10 and 12 (like snoring asleep, not I-just-got-home asleep). My friends stay up until at least 2, but they’re the healthy, I-can-live-off-five-hours-of-sleep type of people. The issue is they think I want eight to 10 hours of sleep. They think I want to wake up early and go to bed early. They think I want to stay home instead of going out with them. They think I want to be the sober one. But none of their beliefs regarding what I want are true.

Who wouldn’t want to go out with their friends, have a few drinks and feel like, for one night, you have zero cares in the world? Who wouldn’t want to experience their 20s? I’m sure at this point you’re thinking OK, I don’t get it, what’s the big deal? Why doesn’t she just go out and do it? To a healthy 22-year-old, the phrase “just do it” is simple and straightforward. When you’re sick, however, you can’t always “just do” things. I constantly have to think about the repercussions of every action I take. I have to think about how much energy it will take, what the effect will be if I overdo it and overflow into using up tomorrow’s energy. When you’re sick, you constantly and simultaneously must think about the past, present and future. How has your body reacted to it in the past? Do you feel up to doing it now? How will I feel about having done this in five hours? Twelve? Tomorrow?

To those of you who think I don’t want to come to your party or go to your house or meet you at the bar, please know that’s not at all the case. I really do want to come and celebrate with you and have a good time and be a “normal” 22-year-old, but what you don’t know is what doing so would actually mean to me. When I overdo it, my POTS (postural orthostatic tachycardia syndrome) acts up, and I can’t stand without my vision blacking out and me starting to pass out. My EDS (Ehlers-Danlos syndrome) makes all of my joints hurt, from head to toe, and the repeated stabbing sensation in my currently obstructed left kidney hurts even more than normal. I’ll be couch-locked from the pain, unable to sit up, and more likely than not the exhaustion will rid me of any appetite and replace it with an intense bout of nausea. If I chose to go out, I have to deal physically with the consequences of my actions.

I understand my lack of presence may cause you to be upset with me, but please don’t take it personally. It’s not that I don’t want to be there for you; it’s that sometimes, when you’re chronically ill, you have to be there for yourself.

Love,

Shayna A Leeds

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