For years, I struggled with a range of perplexing symptoms. Back pain, digestive problems, and extreme fatigue affected me. Multiple doctors offered different explanations. Some attributed it to hormones or inflammation, others to anxiety. They often prescribed steroids or Xanax. The underlying message was clear: the issue lay in my response to the symptoms, not the symptoms themselves.
My health troubles began at 14 with sudden, severe back pain. This pain lacked explanation. It eventually disappeared. At 25, a severe illness hit me during a trip abroad. Like before, symptoms appeared suddenly without clear reasons. I felt drained and frail. Hospital photos captured a pale, weary woman, far from the energetic person I had recently been.
Over a decade, I devoted myself to uncovering the cause of my mysterious symptoms. I dealt with fatigue, weight gain, rashes, joint pain, and cognitive fog. My life became centered around medical appointments, tests, treatments, and fighting insurance battles. I tried everything: supplements, meditation, yoga, and extensive research. Despite my efforts, I only found partial relief.
I adopted resilience, the shield for those enduring chronic illness. I visited numerous specialists, hoping for answers. Some tried earnestly, yet my situation exceeded their expertise. Others dismissed me gently, while some questioned my rationality.
A doctor suggested my symptoms were psychosomatic. Another barely acknowledged me while proposing anxiety medication. Many of them likely didn’t intend to be dismissive. However, I later recognized this behavior as medical gaslighting, as identified by Harvard Medical School. A survey by Mira showed 72% of millennial women felt disregarded by doctors. Another survey by SHE Media revealed 71% heard their symptoms were imagined. I knew my feelings were genuine, yet repeated dismissals took their toll.
By my 36th doctor, I was exhausted, both physically and emotionally, and financially drained. I felt anxious and disheartened, yet this appointment changed everything. That doctor listened carefully and conducted thorough tests. The result? A diagnosis: late-stage neurological Lyme disease. The appropriate treatment, involving herbs and medications, improved my condition.
I experienced validation and relief as my symptoms subsided. My body began to rejuvenate, and I anticipated a happier future. However, unexpectedly, I felt fear, anxiety, and grief over missed life moments and lost trust in my intuition.
I recalled myself through medical appointments, feeling disconnected. Though proud of persisting for a diagnosis, the scars remained. My husband aptly named my struggle: trauma. It clarified my ongoing survival mode.
Health isn’t black and white; chronic illness often falls in between. Improvement comes with emotional distress. I coined ‘Medical Trauma Brain’ to describe my experience. It’s the ailment that follows the illness. Many resonated with, ‘I thought it was just me!’ prompting discussions on prolonged illness’s psychological impact.
Healing requires feeling secure within yourself again, regulating the nervous system, and living in the present to overcome past stresses. I engaged in effective therapies for trauma recovery, specifically cognitive behavior therapy, EMDR, and somatic experiencing. I’ve found lasting healing.
Today, I am healthier and support others in overcoming the limbo between sickness and wellness. Real healing is achievable.
Amy Kurtz is a patient advocate and Lyme disease survivor whose new book, But You Look Fine, will be available on June 9.
All views expressed in this article are the author’s own.
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