RE: Stigma associated with this illness… Public Comment at CFSAC, January 12, 2017
I am Elizabeth Potter, a member of the Massachusetts CFIDS/ME & FM Association.
On May 20, 1985, working at Wang Laboratories as a Senior Systems Analyst, I fell asleep at my desk while typing detailed specifications. When a colleague woke me for the third time in fifteen minutes, I knew something was very wrong! I needed to go home. That became my last day of work.
Within days, my credibility as a respected team leader headed for management ended, replaced by perceptions of hypochondria. I slept 16-18 hours a day as my cognitive functioning rapidly deteriorated. My PCP offered no help and neglected to record my numerous concerns.
Fortunately in 1987, I found a holistic internist familiar with my condition. He gave it a name—Chronic Fatigue Syndrome—and with compassion, helped me to begin to manage my symptoms and he kept meticulous notes.
After five years and two denials, I finally obtained SSDI—a process that significantly reinforced the validity of my condition. Thus when my husband filed for divorce, I assumed I was well armed to receive a fair settlement. Likewise, when my disability insurance provider suddenly cut me off, I felt confident my benefits would be reinstated. In both cases, I lost.
For nearly 32 years, I have lived with the stigma of this serious illness that many still refuse to acknowledge. Financially, had I received fair settlements in both proceedings, I would have the benefit of 2.5 million dollars entering my retirement years and I would still own my home! I was betrayed by my attorneys who failed to believe I was truly ill, and the insurance company that wrongfully broke our contract. The former should be sued for malpractice; the latter for breach of contract. By the time I had recovered enough strength to meet the requirements for filing a complaint; the statute of limitations had long expired. Both the lawyers and the insurance company are protected by the statute of limitations, but who protects me?
Recently, I compiled over 75 symptoms that waxed and waned that I endured for years. Chronic physical pain was sometimes excruciating to the point of tears. Physical de-conditioning created nerve pain, since my muscles could no longer support my vertebrae.
Without comprehensive, stakeholder-approved education, ME/CFS sufferers remain vulnerable to the whims of uninformed experts.