For years, my life was plagued by mysterious symptoms like back pain, gastrointestinal issues, and extreme fatigue. Doctors repeatedly proposed explanations, attributing them to hormones or anxiety, often resulting in prescriptions for steroids or Xanax. Despite the differing details, the underlying message was consistent: the issue was my response to the symptoms, not the symptoms themselves.
My health issues started when I was 14 with crippling back pain without a known cause. It eventually subsided, only to be followed by a severe illness at age 25 during a trip abroad. Again, I faced sudden symptoms without a clear cause, leading to exhaustion and weakness.
Over the next decade, I embarked on a relentless search for answers to my chronic fatigue, weight gain, skin rashes, joint pain, and cognitive fog. I went from one medical professional to another, resulting in a life consumed by medical appointments, tests, and treatments, alongside attempts at lifestyle changes aimed at managing stress.
I was resilient, yet many specialists found my case beyond their expertise. Some dismissed it as psychosomatic, while others suggested anxiety medications. This dismissive attitude correlates with what Harvard Medical School identifies as medical gaslighting. A survey by Mira reveals 72% of millennial women feel unheard by doctors, while another by SHE Media shows 71% were told their symptoms were imaginary.
Despite knowing something was truly wrong, repeated invalidation from professionals led to self-doubt. It wasn’t until my 36th doctor visit that I received validation and a diagnosis of late-stage neurological Lyme disease. Proper treatment allowed physical improvement and a sense of validation I hadn’t felt in years.
Though improving medically, emotional scars remained. Friends and family saw recovery, but I struggled with masking fear and grief over lost time and trust in my intuition. My husband aptly named my experience as trauma, illuminating why I continued to live in survival mode.
Health is not black and white, and many of America’s 194 million adults with chronic illness exist somewhere in between. As I spoke about my experiences, others related, feeling less isolated in their struggles.
We rarely address the psychological impact of long-term illness or recovery from it. Healing involves regaining a sense of security within one’s body and overcoming past trauma. Cognitive behavior therapy, EMDR, and somatic experiencing aided my recovery by addressing the root causes of dysregulation.
Today, I am healthier and more content than ever, using my journey to help others find their path to recovery. Healing is attainable, and I am proof that resilience pays off.
Amy Kurtz, a patient advocate and Lyme disease survivor, releases her new book, But You Look Fine, on June 9.
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