Coping With Death in the Chronic Illness Community

The chronic illness community is no stranger to loss. We have all lost our health, our sense of normalcy, and a lot of us have lost the ease with which we used to relate to able-bodied people. Because of this, those of us in the community gravitate towards each other. Shared experiences create an unbreakable bond between us all. That bond is sacred, and it’s beautiful. That bond is the reason why we grieve so deeply when a member of our community passes away. Even though most of us have never met in person, we are gutted when we lose a member of our sacred chronically ill community. Each loss is layered with nuance that able-bodied people may be unable to fully comprehend.

One of the main things I’ve learned through chronic illness is that meeting in-person is not a prerequisite for friendship. I have formed numerous deep, true, and long-lasting friendships with people whom I’ve only interacted with through a screen. The fact we’ve never met does not devalue or delegitimize the friendship in any way. Meeting someone with similar life experience to yours automatically creates a kinship that other relationships simply don’t have. It’s important to remember and acknowledge that we don’t need to be face to face to be close.

People looking at our community from the outside may see us grieve the death of one of our own and wonder, “Shouldn’t you have seen this coming? They were very ill, after all.” To that I say —  loss is loss, regardless of whether or not you’re expecting it. Yes, we experience more medical emergencies and close-calls with death than the average person might. Yes, we know that our bodies could give out at any moment, and we know the same goes for our friends in the community. For some people we may even witness a steady decline. None of that can truly prepare you for the pain that comes with the finality of death. The pain of knowing that we can no longer chat with them online. The pain of knowing their last update was their last.

Perhaps the most difficult part of a loss in our community is the fact that we see ourselves in everyone we lose. That’s why we bonded with them in the first place. Our entire community is built on the camaraderie of shared experience.  We look up to each other because we see ourselves in each others’ struggles.  We draw strength from watching others tackle the illnesses we share. And since we see ourselves in their lives, we can’t help but see ourselves in their deaths. Of course every body is different, and everyone’s illness progression is unique, but it’s inevitable for us to wonder when and how our time will come.  To wonder how much time we have before we follow in their footsteps. This aspect of the loss adds so much to the weight we’re already bearing. The weight of it all can be overwhelming and it can take a mental and physical toll on us.

To those in our community who are grappling with the loss of one of our own I say this: take care of yourself, be gentle with yourself, and give yourself grace. You may find yourself to be unemotional, or overly emotional. You may have increased anxiety or fatigue. Allow yourself to cope however you need. Grieve however feels right for you. Don’t invalidate your own experience just because it may be different from others. Give yourself space and most importantly give yourself time. And remember that we are all here for each other. Lean on each other because we’ve all been there and we all know how it feels.