PTSD and the Felt Reality of Living with Chronic Disease

For those of us living in the wake of a big diagnosis, how we define life, living and every day can be clouded by fear and misguided ideas of what it means to truly live. What I’ve learned is that life is not about what we are doing, but why and how we do what we have to for however long we get to be alive.

BY Samira Rajabi

PUBLISHED April 11, 2019

Samira Rajabi was diagnosed with a vestibular schwannoma, also known as an acoustic neuroma in 2012. She has had ten surgeries to deal with her tumor and its various side effects. She writes a blog about her life, surgeries, recovery and experiences at LivingWithHerbert.com. She is currently a post-doctoral fellow at the Center for Advanced Research in Global Communication at the University of Pennsylvania, where she studies media studies. In her spare time she plays with her two pups and spends time with her husband exploring Philadelphia.

It has been three years since my last brain surgery. For the longest time, my life existed just between the space of hospitals and home and truly, I was most okay in that space. It became familiar and I was good at navigating it. I was a patient advocate and my doctors seemed to like me. In some ways it even became a comforting routine to know that my health was not in my hands and I could relinquish myself to the experts. Yet, as the years have crawled by, things have changed. My health and prognosis improved and I was thrust into the anxious space of figuring out what to do with my time outside of appointments and pain management.

In this vein, I recently went for a job interview for an academic position. This was exciting, not just because it’s difficult to get these interviews, but because it felt weird for me to apply for jobs. It feels strange to me to be well enough to look forward.

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