Overcoming Medical Gaslighting and Chronic Illness

For years, I endured a range of baffling symptoms: back pain, gastrointestinal problems, and extreme fatigue. During this period, I often heard the claim that my reaction to these symptoms was the core issue. Doctors varied their explanations, attributing my condition to hormones or inflammation and prescribing steroids. Some suggested anxiety and offered to prescribe Xanax. Yet the underlying message was consistent: my symptoms weren’t the primary problem.

My health struggles began at 14. I suddenly experienced severe back pain that was unexplained. Over time, the pain eventually subsided. At 25, while on an overseas trip, I fell seriously ill again. Symptoms reappeared without a clear cause. I was left physically exhausted and mentally drained. Photos from the hospital show a pale, gaunt version of me, drastically different from the vibrant young person I was weeks earlier.

In the following decade, I dedicated myself to uncovering the reasons behind my symptoms—fatigue, weight gain, rashes, joint pain, and cognitive fog. This journey turned me into a ‘professional patient,’ engulfed by medical appointments, tests, medications, and insurance disputes. I tried various remedies, from lifestyle changes to stress management techniques. Some methods offered partial relief, but none were sufficient. I pushed on, equipped with the resilience needed to cope with chronic illness.

I consulted countless specialists, each time hoping for an answer. Some saw the effort as beyond their scope. Others dismissed me, with one implying my symptoms were imaginary and another suggesting anti-anxiety medication without much discussion. Their dismissive attitude is recognized as medical gaslighting by Harvard Medical School. A Mira survey reveals this affects 72% of millennial women, while 71% of SHE Media respondents reported being told their symptoms were figments of imagination.

Despite knowing my symptoms were real, being told otherwise repeatedly affected me. By my 36th consultation, I was drained—physically, mentally, and financially. Yet this appointment marked a turning point. After thorough testing and genuine attention, the doctor diagnosed me with late-stage neurological Lyme disease. The correct treatment, including herbs and medications, improved my physical health, bringing a rare sense of validation.

As my health improved, I realized I was masking ongoing fears and anxiety. I also experienced profound grief over lost years spent in medical facilities. Having lived so long invalidated by professionals and loved ones, my self-confidence suffered.

I eventually named my experience as trauma. It explained why I felt perpetually in survival mode. Common views on health are too binary; many among the 194 million Americans with chronic illness exist in a gray area—medically stable but emotionally depleted. I referred to this as ‘Medical Trauma Brain,’ indicating my lingering distress.

Expressing this concept publicly revealed others felt similarly misunderstood. The psychological aftermath of prolonged illness needs more discussion, particularly about how it can be healed. This secondary journey is about re-establishing safety within oneself and regulating the nervous system to ground oneself in the present.

Traditional talk therapy wasn’t enough for my needs. Recognizing my trauma allowed me to seek therapists specializing in appropriate modalities. Cognitive behavior therapy, EMDR, and somatic experiencing helped address my issues and stabilize my nervous system. Today, I am noticeably healthier and am assisting others to traverse the path from illness to wellness.

Amy Kurtz is a patient advocate and Lyme disease survivor. Her new book, “But You Look Fine,” releases on June 9. All opinions expressed in this article are her own.