What I Realized About My Mortality and Chronic Illness

I’m afraid of death. Petrified of it actually. Having anxiety with intrusive thoughts means that I tend to think about death way more than the average, neurotypical person does, which doesn’t help the fear. In recent months, I’ve been hit in the face with a reality I wasn’t prepared to face.

I’m completely unprepared for sudden death.

You might ask, “who really is prepared to die suddenly?” To which I might respond, “No one actually.” But it’s a reality I have to have an understanding of and plan accordingly.

I have an illness that can deteriorate rapidly with no hope of recovery. Life-threatening complications aren’t uncommon. I frequently bounce between moderate and severe symptoms, and there may come a day where I never bounce back.

Having complex medical conditions, you get accustomed to changes in your health, as well as changes in your life and the plans and goals that you’d had for yourself. You grieve the life you used to have and the life you are now unable to have (at least not in the way you’d imagined it). Now, I grieve life in general and I don’t know how to talk about it without feeling like I’m “giving up” or being pessimistic.

On the contrary, I plan to live my life happily as much as I am able to do so, but at just 24, I also have to make sure my affairs are in order in case I take a turn for the worst.

Confronting my mortality has been difficult. I’ve known that with my conditions (myalgic encephalomyelitis and Ehlers-Danlos syndrome), it’s likely that my life will be shorter than average due to the number of complications that can often come up with people who have each of my conditions alone. In 2021, I experienced rapid changes in my health. I’m getting worse, even if it isn’t visible to others. I can feel it. My chronic illness has gone from just barely being managed to now requiring invasive procedures to investigate organ issues.

You can just wake up one day and suddenly have three surgeries scheduled in the coming months. Chronic illness is wild like that.

I’ve been experiencing a rise in new symptoms and a decline in “good” days where I can leave my bed successfully. My care team has been guiding me through making a will, assigning a power of attorney, and thinking about my end-of-life care, not because I’m dying but because I could be and in case I’m unable to advocate for myself, I need to have protections in place. It’s one thing to be told that you have a terminal illness, there is at least some solid understanding that you won’t survive it. It’s another to be told that you could “probably” die, you just don’t know when.

I don’t want to die anytime soon and it’s hard to acknowledge that I could die from an illness that many doctors aren’t even aware of or, if they are, they have an incorrect understanding of it and how to navigate it.

Myalgic Encephalomyelitis itself isn’t a death sentence, but many of us go without care, are neglected or receive the wrong care and die. I’m lucky to be in a position where I’m currently well enough to even be planning things for future me, who may not be.

We know that every day isn’t promised, and I can’t afford to ignore the topic of death out of my own fears, because death is inevitable and she and I are going to have to get really friendly someday in the future.