Changing the Way I Define Hope in Life With Chronic Illness

Hope. What a complex and complicated word. In the last several years of battling a chronic intractable migraine disorder and autoimmune disease, I’ve found myself taking this elusive hope and stuffing it into the back of my closet. Good riddance. I found that every time I started to let myself feel it, I fell from such great heights right back into the bottom of the pit. It has been safer to stay in the darkness. Hope — as I have been defining it — has been too painful.

In a strange way, staying curled up in the darkness has cloaked me in a protective layer. And while I can recognize and honor that this has been protective, I have also come to realize how restrictive and limiting it has been. Without hope, we are hopeless. And we can lose our will to live.

I’m slowly (and painfully) learning the way I’ve defined hope in the past has set me up for disappointment time and time again. It’s the shadow side of hope. The side of hope that is grasping and desperate. I’ve been hoping for a certain thing and exactly how I want it to look, and not open and available to other possibilities. It’s made it so I have not been receptive, and my narrow focus has often gotten in the way of my ability to appreciate the beauty of simple moments or celebrate small victories. By being in this constant state of resistance, I’ve struggled to fully appreciate the beautiful life I currently have, despite my struggle.

And while this life may not be exactly what I imagined for myself, I yearn for a place of acceptance for what is. Not a defeated type of acceptance, but a place of peace. A place where the light can still get in, even on my darkest days. A place where I can simultaneously honor the grief and loss in one hand, and a place of peace and gratitude for the life I’m currently living in the other. And that acceptance? It doesn’t mean giving up on the idea that I will someday have answers. That there will someday be a treatment that will lessen my struggles. I deserve to feel better. To be better. But I don’t want my life to pass me by waiting for something that may never come.

So, I’m learning that hope is a dance. An ebb and a flow. A holding onto both feelings — the peace and acceptance that I may never be totally “better” in the way that I want, but also the ray of light that beams through the cracked door. An attitude of openness and true receptivity of what is being presented to me, even when it’s really difficult. And allowing space for the possibility of healing in the way I so deserve. We all deserve it.

This is all easier said than done. We are human. We are emotional beings that need to honor and express our feelings. We need to make space to pause, and mourn, and grieve. To take breaks and rest when we need to. To ask for help when we can. More than 10 years of debilitating chronic illness has left me at war with my own body. But I am ready to come home. I’m so looking forward to that reunion.