Chronic illness is wildly unfair. The relentless pain and fatigue and uncertainty about the future, let alone the never-ending medical appointments, is enough to quietly drive oneself out of one’s mind. (For some of us, that’s a short ride.)
The losses of illness are pervasive. It is not just about losing flexible joints or a pain-free existence. It’s the loss of the life I wanted to live, the fun-loving and carefree person I wanted to be. It’s the loss of mental health and sense of who I am. It’s the loss of predictability in my day, the loss of choice.
It’s the loss of predictability, the loss of choice.
I cannot work the hours I want to work. I cannot do all the tasks I have planned in my day. I can make plans but I cannot guarantee I can keep them. I cannot focus my thoughts or muster the energy required for ministry and creativity. I struggle to keep in touch with friends. All because of an illness that will not get better.
These losses are not OK.
There is nothing about chronic illness that is OK.
The grief of chronic illness is profound.
When you hear the word ‘grief’, what you you picture? I used to imagine grief was being curled up on the couch, sobbing into a tissue, feeling sad and forlorn. I thought grief meant you lost your purpose and passion. I thought grief made you a misery guts.
I never expected grief to look so much like anger.
I never expected grief to look so much like anger.
Instead of curling up on the couch, I want to punch the pillow. Instead of sobbing, I want to scream into the wind (in a way that does not startle the neighbours). Instead of feeling sad, I feel outrage for everything illness has stolen from me.
If anything, I feel even more purpose and passion in illness than I might otherwise. Every time I get sick (again) or develop a new and mysterious complication, it pours fuel on the fire. It ignites my writing about this subject. It inspires me to reach out to others and let them know they are not alone.
Being disempowered by illness has empowered my writerly self.
Being disempowered by illness has empowered my writerly self.
So if you live with chronic illness, you are not alone. If you grieve the person you used to be and the life you might have lived, you are not alone. If you feel royally angry about it, you are certainly not alone.
Chronically ill people are often expected to be ‘brave’ and ‘grateful’ and face their prospects with the resolve of a ‘warrior’. But surviving chronic illness does not feel brave. I am not grateful for my illness (I am grateful for many things, but illness is not one of them). And I feel nothing like a warrior.
But I am sad. I am grieving. And I am angry about chronic illness.
I am angry about chronic illness.
If you feel the same way, your feelings are legitimate. Don’t let anyone tell you how to feel about your illness. Go ahead and feel however you are feeling, including rage. And go ahead and channel that rage into something helpful, like writing, or reaching out to others.
Because we are not alone.
Do you live with chronic illness, or know someone who does? Is there rage that lives inside the grief? What do you do with that rage? Share your story. Let’s have a countercultural conversation.