Death in the Chronic Illness Community

TW: Death Talk

Also to my friends that read this I’m including some things about our friend that passed recently. Just a warning if you aren’t ready for that yet.

Death is a very common thing in the disabled and chronically ill community. So much so that some of us become numb to all of the names we see each day that have passed with the same conditions we have. Becoming numb to all of it is how most of us survive it day after day after day. But when it’s someone you know, someone you love and have talked to on a consistent basis, numbness is impossible and it cuts deep.

A few days ago a dear friend of mine passed very suddenly and it hit me hard. They had the same conditions I do and I’d spoken to them less than 48 hours before they took a turn for the worst. Things seemed good with them. We laughed and joked like we always did and I had no reason to think anything was seriously wrong.

So when their obituary flashed across my screen on Facebook yesterday, I had to stop myself from letting off a guttural scream.

What do you mean they’re gone? I wanted to scream. They were fine!!!!!!!

Only they weren’t.

I can sit here and theorize a million different scenarios of why they went down so quickly but the truth is none of us really are ever “fine”. We get so used to telling everyone we’re fine that when we have something major going on it’s easier to pretend everything is okay. We should be free to say when we are not okay, but in today’s society a lot of us don’t feel like we can be as open as we’d like to be about our health.

My friend had pneumonia. They were put into an induced coma less than 48 hours after I talked to them, yet in our last conversation they said they were “fine”. They never came out of that coma.

I think as a whole the chronically ill community works very hard to convince everyone we are fine. When we say we’re sick the response given to us by ableds is usually “get better soon,” but for us we WON’T get better. We’re lucky to have our good days but our good days don’t take away from the conditions we have. A good day does not mean we are getting better, contrary to the beliefs of a lot of ableds. Something like pneumonia knocks someone with a chronic illness down several notches lower than it would an abled person.

Accepting our conditions is one of the hardest things chronically ill people deal with. I was born with my conditions so to some degree being disabled is the only life I’ve known, but as I’ve aged some things have gotten worse and I struggle with that. Chiari is definitely something I struggle with a lot. My brain has limits now I didn’t have when I was younger. And when someone dies who has such a similar health struggle to me it’s scary and hits close to home. Death is a part of life and I accepted my death a long time ago. I don’t fear death but I’m also not ready to die. Losing my friend made me aware of how fragile I am. After all, it was less than two months ago I was dealing with my own lung problems.

Being born disabled with several chronic illnesses, I was exposed to death a lot earlier than most of my peers and maybe that’s why I don’t fear it. My first memory of losing a friend I was eight years old and that wasn’t my first experience with death, just the first time I’d lost a peer. She died due to a botched spine surgery, a surgery I was supposed to have as well. I didn’t have that surgery and that surgeon has killed several more people since. Last I heard they were still operating on children and that fact terrifies me.

My heart hurts with loss and I am so grateful to be surrounded with people who get it. Our loss has brought us together and I know our friend would want that. Yesterday when the obituary was published we were all checking on each other and talking more than a lot of us had in a while. They would also want me to keep advocating and writing, telling my story, so that exactly what I’m going to do.


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