Why I Grieve When I'm Given a New Diagnosis

Grief, loss and guilt.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

When you hear these three words, bereavement is probably what comes to mind.

You wouldn’t be entirely wrong, but it’s probably not the type of bereavement you think.

You see, I am very much alive, but I still went through the grieving process over myself when I realized I was chronically ill with no cure for my illnesses.

I didn’t think I would grieve when my diagnoses were confirmed. I didn’t think I would still grieve with every new diagnosis given, but I do. I was diagnosed with physical illnesses, but I am still alive, so why was a grieving? I wasn’t prepared for that sense of loss I experienced. I had to recreate myself, and that was hard, because I wasn’t sure who I was without the things that made me, me!

I thought I wasn’t entitled to my feelings. How dare I grieve for myself when I am still alive. It took me a while to realize my feelings were totally acceptable. My life was going to change dramatically, my future plans scrapped. I was more than entitled to my feelings, even if I wasn’t expecting them.

It’s OK to grieve over the past, over yourself. It’s OK to feel lost and in uncharted territory. It’s OK to be angry too.

It’s what you do with these feelings that matter. At first, I was overwhelmed by how I could find out who I was without doing all the things I used to love. I was adventurous. I was sporty. Caving? Climbing? Abseiling? Skiing? You name it, that was me, that was who I was. Without those things, how was I going to be me?

I am still me. I am still adventurous. I horse ride with the Riding for the Disabled Association now, instead of climbing etc. I am still able, I am just differently able now.

Part of coming to terms with the loss of your sense of self is accepting that’s how you feel and that’s OK.  It’s also helpful try to get back into things you used to do, or altered activities you can do.

You are entitled to your thoughts and feelings. Every.Single.One. (Even the ugly ones.)