Navigating Chronic Illness and Medical Trauma

For years, I struggled with unexplained symptoms, including back pain, digestive problems, and overwhelming fatigue. Each doctor provided different explanations, such as hormones or anxiety, often prescribing medication more suited to treating perceived reactions rather than underlying causes.

My health issues began at 14 with sudden back pain that seemed a mystery. This resolved temporarily, but by 25, a sudden illness while traveling left me utterly depleted and unrecognizable from the person I was just weeks prior. A hospital photo showed me gaunt and bewildered, a stark contrast to my previous vibrant self.

My search for answers spanned a decade, consumed by appointments, tests, and battles with insurance. I committed to lifestyle changes aimed at reducing stress, but it never felt like enough. Specialists varied in response, some dismissive and others suggesting psychosomatic causes. I realized this trend reflects what’s known as medical gaslighting. Surveys show a high percentage of millennials, particularly women, experience this dismissal. I felt alone in my certainty against professional doubt.

On my 36th doctor’s visit, a transformative diagnosis of late-stage neurological Lyme disease came after rigorous tests and attentive listening. This validation was a relief, matched with an effective treatment plan leading to physical improvement.

Despite my recovery, I faced lingering fear and grief. My illness was acknowledged, but many years of life had passed, leaving emotional scars and a fractured sense of self.

My husband’s words illuminated my situation: the experience had been traumatic. Understanding this trauma was key to healing. The journey wasn’t over upon medical improvement. I began referring to my experience as Medical Trauma Brain, an ongoing impact shared quietly by many living in the shadow of illness.

Realizing talk therapy’s limits, I sought therapists skilled in trauma recovery. Techniques like cognitive behavior therapy and somatic experiencing helped reprogram my nervous system and restore my sense of safety.

Emerging from this journey, I am healthier and use my experience to assist others navigating similar paths, proving that holistic recovery is attainable. I hope to inspire those in the intermediate space between sickness and recovery.

Amy Kurtz is a Lyme disease survivor and advocate, sharing her insights in her book ‘But You Look Fine’ released on June 9.