Once diagnosed and willing to accept my diagnosis of primary lymphedema, I wrestled with the idea of therapy. I was mourning the loss my body, the life that I wanted to live… and myself. I didn’t know how to cope. My psychosocial support was strong but, I longed to feel “normal” and talk about my condition without trying to educate someone on the lymphatic system or the “heavy” feeling of my leg.
As I shared my frustrations with my occupational therapist, she suggested connecting with other lymphedema patients - specifically those who had a primary lymphedema diagnosis. She made an introduction to a couple of people, who I instantly connected with.
We shared stories, treatment plans, and routines. We discussed exercise regimens, stocking brands, and doctors. And we connected over our respective feelings of gratitude as we freely discussed our condition. Together, in conversation, we felt normal.
Though primary lymphedema is considered to be a rare disease, I am thankful for the community of people who speak publicly about their conditions.