The Grief of Living with a Chronic Illness

When most of us picture grief, we picture a moment, an incident or a tangible loss. We picture a funeral, tears and goodbyes. But there is a kind of grief that doesn’t announce itself that way. It is invisible, comes in waves and quietly settles in over the years. It is the silent grief that comes with living a life with chronic illness. This loss is not a single loss. This kind of loss means losing things repeatedly and often invisibly. 

It is the loss of the energy you used to have. The career path you had imagined for yourself. The friend, partner, parent you expected yourself to be. The version of your future that you had planned for. Many people with chronic illness are silently mourning the relationship they used to have with their body that changed without their permission.

Traditional grief has a shape we recognize - a loss, a funeral, then making peace with the loss. Grief from chronic illness isn’t linear. There is constant adaptation to new symptoms. Another adjustment is required to cope. Yet another small piece of expected life gets revised. This  grief is cyclical because the losses genuinely keep coming. They don’t stop. 

Sometimes, this kind of grief gets missed even by the person carrying it. It is not easy to continue to live in a culture that invalidates the grief of lost capacity to function and the loss of certainty. And so, the people with chronic illness become experts at appearing okay. And because they appear okay, the grief beneath the surface never gets witnessed, sometimes not even by themselves. 

If you recognize yourself somewhere in these words, I hope that you know what you are carrying is real. You are not only grieving for your health. You are grieving the assumption that your body would cooperate with the plans that you had for yourself. And that is a profound loss that deserves to be witnessed.