Working Through the Grief of My Chronic Illness Diagnosis


Grief. We have all felt it in some way, whether it’s a loss of a relationship, death of a loved one, loss of a dream, or an illness. I have experienced a lot of grief since my diagnosis. For a while I couldn’t name it, I just felt an immense amount of sadness inside me. As I have gone forward on this journey, I can now name it as grief.

I think one of the hardest things is grieving your body and your former self. For a long time, I thought my body betrayed me, that my body was broken. I felt lost and alone. I remember one day in therapy when I fully expressed the grief I felt. I had been hiding it for a while, not letting myself truly feel it.

I remember expressing my fears. Will I need to use a wheelchair one day? Will I die from complications of this disease? Will I be able to have children which has always been a dream of mine? Is it selfish to have children considering this is a genetic disease? It went on and on. When I had fully let these fears out in the open, I felt free. I didn’t feel that everything had been solved, or anything for that matter. But I felt lighter.

It was scary to put it out in the open. I thought that if I didn’t it meant everything was fine and those scary things may not happen. I realized that when I tried to hide the grief, it comes out in other areas. For me that means being irritable with loved ones, turning to unhealthy eating behaviors, being so busy that I can’t stop and think. It seems like with grief I have to walk through it, face it and feel it in order to overcome it.

I still feel grief. I feel it often. I name it, feel it and use tools I have learned to deal with it. A lot of times that means crying, writing, talking with safe people, reading, doing artwork, whatever works in that moment to fully feel my feelings. I am not saying it’s easy. Some days I still avoid it. But it has gotten better.

I think the most important thing is that I be gentle with myself and meet myself where I am at. If that means for today I want to avoid and not feel the grief, that’s OK. If that means I want to drive around and scream and cry, that’s OK as well. Being gentle with myself and realizing what I am capable of doing in that moment is essential. It’s a form of self-care, love and acceptance for myself.

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