Medical PTSD Is a Reality for Many of Us Living with a Rare Disease

I wake up sweating.

I feel tears pouring down my cheeks, and my throat is sore from screaming.

Where am I?

Why is it so quiet?

I get out of bed, walk to the kitchen, and pour myself a glass of cold water, splashing a little onto the floor as my hands are still shaking from the images that have flashed through my mind.

My husband has woken up, too. He sits with me, hugs me tightly, and tells me over and over, “I love you. It will be OK.”

I’m alive. I’m home. I should be fine.

This time last year, I was preparing for a stem cell transplant for myasthenia gravis — the first of its kind in South Africa, where I live. I remember it as if it were yesterday. I had twice-daily injections, then spent three months between my home and isolation before being allowed out in public again. I lost all my hair overnight and had to be rushed to isolation when they discovered that I had an infection my body couldn’t fight.

I had no human contact for over two weeks, and everyone I saw was in full hospital gear with masks, booties, hospital gowns, and hair protectors. I forgot what it was like to get a tight squeeze from a loved one — even the nurses weren’t allowed to touch me. Changing my drips involved no skin-to-skin contact. I was alone for 22 out of 24 hours a day, and my thoughts were in a very dark place.

I was swollen and sore and began to react to the medication that was continually flowing into my veins. I couldn’t enjoy moments of silence, as the heart monitor beeped 24/7 and my drip would frequently screech out when it detected an occlusion or another issue.

Megan and her mother. (Courtesy of Megan Hunter)

I came out of it alive, but my heart still beats faster when I think back to that time. I get cold sweats. I fight back tears in the middle of a seemingly ordinary day. Some days, I pull the duvet over my head and cry into my pillow. I take antidepressants.

We need to recognize that medical post-traumatic stress disorder is a reality for some of us. Many rare disease patients have had multiple hospital admissions, and these were probably unpleasant experiences. We fear a return to this state and worry that our normality will be ripped away from us.

Be kind. Always.

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