Note: This column includes thoughts about suicide. Resources for help are listed at the end of the column.
This week I did a self-inventory, as I’d become concerned about a few things. I noticed there are times when I sit in a chair, stare out the window, and do nothing. Sometimes I’ll pick up a book and, 30 minutes later, notice I haven’t read a page. There are times when I sit down with my to-do list and, hours later, get up from my desk without a single item completed.
Performing this inventory gave me insight into the state of my emotional health. On the surface it may seem that I’ve become lazy and careless. It may be easy to dismiss me as one who has decided to glide through his days. Those whose lives have been altered by a rare disease will understand my experience.
In June 2020, I was diagnosed with myasthenia gravis (MG). The initial stage of the disease necessitated taking high doses of prednisone. After several months, my condition didn’t stabilize, but the prednisone resulted in avascular necrosis of both hips. This condition causes the death of bone tissue, which can result in mild to severe pain in the affected area as well as seemingly unconnected parts of the body. I developed severe and constant pain in my hips, genitals, legs, and groin. Loss of bladder control added to the misery. Eight months lapsed before the cause was diagnosed.
During those months I experienced pain so intense and constant that I was on the verge of insanity. Friends would sit with me, and what they witnessed made them cry. I reached a point where I begged God to take me. I even considered asking my sister to help me put an end to the situation.
Concurrently, I began to undergo my first myasthenic crisis. I lost my ability to speak. Eating was impossible. Thirst became a form of torture. My sister would hold a teaspoon to my lips, but the tiniest sip was impossible. Eventually I couldn’t keep my eyes open. In critical condition, on the brink of respiratory failure, I was hospitalized.
I underwent 10 days of plasmapheresis. This procedure is lifesaving, but it’s gruesome. For someone like me, with a severe aversion to needles, it was particularly difficult.
The physical pain of those days passed. I was discharged from the hospital and returned home like one returning from battle. To see me today, one might conclude that I’m “back to normal.” That isn’t the case.
I knew what had caused the physical pain; now I needed to find the root of this emotional pain.
Understanding the effects of medical trauma
My search led me to the 2019 Psychology Today article “Chronic Illness and Trauma Disorders” by Katie Willard Virant, a licensed clinical social worker. She shares a definition of post-traumatic stress disorder (PTSD) by Donald Edmondson, PhD, which was published in 2014 in the journal Social and Personality Psychology Compass. Edmondson writes that PTSD is “an anxiety disorder initiated by an exposure to a discrete traumatic event that has generally occurred in the past … and is characterized by symptoms such as re-experiencing …, cognitive or behavioral avoidance of reminders of the event …, and physiological hyperarousal.”
In regards to the effects of medical trauma, Willard Virant notes, “Perhaps most salient is the changed understanding of our own vulnerability to pain, suffering and death. Our previous worldview — in which the world and our place in it were things we understood — has been shattered by illness, and our perception of safety has been altered irrevocably.” It’s a perfect description of the past four years of my life.
Self-diagnosis can be dangerous, but PTSD appears to describe my situation. Neurologists and orthopedists assisted in my physical healing. Now I need a professional who can assist with emotional healing.
Willard Virant concludes, “People can and do use adverse events such as chronic illness to make positive changes in themselves, their relationships, and their worldview.” Something good can come from these dark times. Like an alchemist, I need to turn the darkness of my medical trauma into gold.
If you are struggling with thoughts of suicide, please contact the Suicide Prevention Lifeline in the U.S. (988, or 988lifeline.org, available 24/7) or Samaritans in the U.K (samaritans.org).
Note: Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Myasthenia Gravis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to myasthenia gravis.