For years, I struggled with unexplained symptoms: back pain, gastrointestinal issues, and extreme fatigue. Each doctor visit ended with similar dismissals. Some attributed my symptoms to hormones, offering steroids, while others suggested anxiety, prescribing Xanax. The underlying message remained: the issue was my reaction, not my symptoms.
My health problems began at 14 with sudden back pain. The cause was unclear. The pain eventually subsided, but at 25, during a trip abroad, I became severely ill. The symptoms returned without explanation. Photos from the hospital show me as a pale, gaunt shadow of the vibrant person I once was.
Over the next decade, I dedicated myself to uncovering the cause of symptoms like fatigue, weight gain, rashes, joint pain, and brain fog. My life centered on medical appointments, tests, medications, and insurance disputes, along with supplements and lifestyle changes aimed at stress management. While some measures helped, none provided enough relief.
I consulted numerous specialists, hoping one would find the answer. Many tried, but my case was beyond their expertise. Some dismissed me politely, others made me feel my concerns were invalid. One doctor suggested psychosomatic causes, while another barely looked up from his notes before recommending anti-anxiety medication.
Unbeknownst to me, what I was experiencing aligns with Harvard Medical School’s description of medical gaslighting. A survey by Mira found that 72% of millennial women felt dismissed by doctors. Another survey by SHE Media revealed 71% of people were told they were imagining symptoms. Despite experts’ repeated dismissals, I felt certain that what I experienced was real.
By the time I saw my 36th doctor, exhaustion had set in. Physically, mentally, and financially drained, I doubted this visit would differ from the rest. Incredibly, this doctor changed everything. After thorough questioning and testing, I was diagnosed with late-stage neurological Lyme disease. Treatment with herbs and medications improved my physical health, providing long-awaited validation.
As my symptoms improved, I appeared better to others. Yet, internally, I masked fear, anxiety, and grief. I mourned the lost years spent in exam rooms and the erosion of my confidence from medical dismissal. During a conversation with my husband, he identified what I was experiencing as trauma.
We often view health in binary terms: sick or well. However, many of the 194 million Americans with chronic illnesses exist in between, medically improved but emotionally shattered. I began calling my experience “Medical Trauma Brain,” describing the psychological impact after enduring illness. Upon sharing, others echoed my sentiment, grateful to learn they weren’t alone.
The psychological effects of prolonged illness aren’t widely discussed, nor is healing from it. It’s a journey toward feeling safe in one’s body, relearning to regulate the nervous system, and living in the present. While years of therapy didn’t address my needs, enlisting therapists who specialize in trauma healing methods made a difference.
Approaches like cognitive behavior therapy, EMDR, and somatic experiencing were crucial in helping reprogram my nervous system. Today, I feel healthier and happier than ever. I’ve dedicated myself to assisting others in navigating the uncertain ground between being sick and well. I overcame it, and I believe you can too.
Amy Kurtz is a patient advocate and Lyme disease survivor with a new book titled But You Look Fine, available on June 9. All views expressed in this article are the author’s own.