Validating a Painful Experience Builds Resilience
As a columnist, I try to read and expose myself to topics that might inform my writing. Recently, I came across a phrase that piqued my interest because it closely reflected what my husband and I, as well as many disease sufferers I’ve met in my work as a patient advocate, have experienced.
Medical PTSD is a phrase I haven’t used before, and hearing it acknowledged during a recent Rare Disease Day 2022 webinar stirred something so deep within me that I had to pause and reflect on why I felt so charged. I instinctively recalled the many times my husband, Aubrey, and I have been patronized, devalued, hushed, and frowned upon by various individuals from organizations charged with patient healthcare and wellness management.
Aubrey suffers from hereditary ATTR amyloidosis. This disease was unfamiliar to many doctors back in 2013, when he was diagnosed, and this lack of recognition still prevails today. Because of this, being referred to an appropriate clinician is often a problem, and even more dreadful is the lack of treatment access. The current climate for those with rare conditions in New Zealand, where we live, and many other countries worldwide is deplorable.
Although I could understand why we had those experiences, both of us walked away from each event scarred and hurt. We felt like we had been kicked to the curb, and felt lonely and isolated. We were told to go home and enjoy our remaining time together because there was nothing else the clinicians could do to help Aubrey. This emotional maiming takes a toll.
Hearing about medical PTSD stirred me because I’ve experienced a prolonged period of loss. I’ve had to accept what was happening to my husband, watch him fall apart, and grieve as he gives up dreams and hopes that are no longer attainable because of his disease. For Aubrey, undergoing a painful and dreadful liver transplant, coupled with all the torture hATTR amyloidosis causes him, has been heartbreaking.
Hence, hearing a term that describes what we’ve gone through gave me a sense of acknowledgement. After years of feeling alone in our anguish and grief, I realized we had become part of something larger. The angst and pressure I felt were released when I learned that other rare disease patients were facing the same traumas.
Labeling people to control them is wrong, but in this instance, classifying a collective experience can provide a sense of validation. We’re not alone after all. This builds in us a feeling of resilience and pushes us to keep going.
On his blog “Life Support System,” author Steve Goodier wrote:
“My scars remind me that I did indeed survive my deepest wounds. That in itself is an accomplishment. And they bring to mind something else, too. They remind me that the damage life has inflicted on me has, in many places, left me stronger and more resilient. What hurt me in the past has actually made me better equipped to face the present.”
Note: FAP News Today 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 FAP News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to familial amyloid polyneuropathy.
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