Monday, October 19, 2015

What Doctors Forget to Say After a Chronic Illness Diagnosis

The doctor’s confusing medical lingo filled the stagnant hospital air. I was diagnosed. Informative conversations with my medical team, internet searches, and various drug pamphlets offered hope for my diagnosis years ago. However, none of the above could prepare me for what was to come. 

In the midst of that initial hope, it is not mentioned that “chronic” is lifelong - a life filled with the waxing and waning of pain. The doctors forget to mention that health may not improve and could potentially worsen. Their half smiles do not reflect the many nights lying in agony on the bathroom floor praying for even seconds of relief. They do not warn patients of the isolation that comes with fighting a chronic disease, or how difficult it is when my family and partner cannot truly fathom my experiences because the pain will always be solely my own to bear. It slips the doctor's minds that friends find avoidance easier after they grow weary of plans inconvenienced with pills, symptoms, and unplanned emergency room trips. 

An orange prescription bottle is handed with a, “Here, take this,” and absolutely no acknowledgment of the consequences that may ensue from undergoing such aggressive treatments for life. They do not warn of the moments when it is difficult to determine if the symptoms are side effects or part of the disease.  It is not communicated that there will be days when looking in the mirror causes tears to roll down my pale skin because my body is unrecognizable between medical interventions, hair loss, and the clothes falling off my emaciated frame. The doctors also leave out the grieving process, as well as continually losing and finding myself again. 

On the day of the diagnosis, the team of doctors with fancy prescription pads and intimidating white coats fail to offer the slightest indication of the loss and pain that results from chronic illness. Instead, they offer hope that the disease will miraculously go away or be easily managed with drugs that they claim do not have any dangerous or unpleasant repercussions. And five years later, when there is not yet an effective treatment, they forget to offer that hope. Hope, however, still remains. There is hope to live a positive life, despite chronic disease. It only has to be lived a different way. In the meantime, while still having faith that God can choose to perform miracles, I am learning to be okay with that.