I was a victim of medical gaslighting

I will never forget that first attack. I was a 16-year-old bookworm planning a career in health care, with no idea yet how many lifelong medical lessons I would learn firsthand – not as a nurse or doctor, as I wanted to be, but as a patient.

In three days 11^vol class, I stayed home from school. I couldn’t stop vomiting. My mother was worried enough to take me to the emergency room, where I was admitted with possible appendicitis.

The medical staff performed a series of tests that left them puzzled. My mother suggested that I be tested for a rare genetic disease called porphyria, which took my grandmother’s life in the 1960s. The doctor asked if my mother had ever been tested for this, but she hadn’t. So we were told it was impossible for me to have it.

Despite my mother’s insistence, the doctor refused to test for this disease because porphyria is extremely rare.

I have vague memories of lying in a hospital bed in the fetal position, terrified, exhausted and tormented by abdominal pain that the doctors did not want to treat because I was so young. My memories of that time are fragmented, but I will never forget my mother, who ran into my room one morning with a look of panic on her face: The World Trade Center had just been hit, she told me. I was so sick and out of touch that day that I didn’t understand the gravity of what she had just said.

I thought this day would be my last on Earth. It was on September 11, 2001 that I had my first attack. This time, my parents transferred me to a larger hospital three hours from our home in rural New York.

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Photo from the author

There, a specialist conducted appropriate tests and confirmed my mother’s suspicions: The genetic disease that took my grandmother’s life has now found me.

I was diagnosed with acute intermittent porphyria, or AIP. Honestly, I was relieved to have a name for what hurt me, even if I could barely pronounce it.

For the first two years after my diagnosis, attacks occurred once or twice a month, each time leading to hospitalization lasting up to six weeks. They always started the same way: fatigue and throbbing headaches, followed by a feeling of aggression and irritability, and then a pain and burning sensation in my stomach that felt like melted hands twisting my insides. Other symptoms included a feeling of heaviness in the limbs and extreme sensitivity to light, sound and smell. I just wanted to sleep in a quiet, dark room forever.

Over the years, I have become somewhat of an expert on AIP. It is a type of acute hepatic porphyria (AHP), a family of rare genetic diseases characterized by potentially life-threatening attacks and, for some people like me, chronic, debilitating symptoms that negatively impact daily functioning and quality of life.

There are 4 types of AHP: acute intermittent porphyria (AIP), hereditary coproporphyria (HCP), porphyria variegated (VP), and ALAD-deficient porphyria (ADP); with AIP being the most common type of AHP. AHP can affect people of any race, ethnicity, age and gender; However, research shows that approximately 80% of people diagnosed with AHP are women.

AHP is unpredictable and unforgiving and can disrupt everything from sleep to the ability to work and socialize. The Cleveland Clinic also reports that people experience the disease in a very different way, with symptoms that can include body pain, a range of stomach problems, hallucinations, seizures, delirium, fatigue, heart palpitations, loss of sensation, and numbness and tingling.

In its most serious stages, it can be life-threatening due to the possibility of paralysis and respiratory arrest during attacks. Such a wide range of symptoms and lack of awareness about the disease may make diagnosis difficult.

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After high school, my doctors developed a treatment plan that reduced the number of attacks from 14 per year to three to eight.

I applied to college late and was accepted. It was a huge challenge for me and many times I thought about giving up. Stress was a big trigger for me: I would have attacks around midterms, finals and big projects. But I’m a fighter. I don’t accept failure and I don’t give up. It took me six and a half years, but I graduated with a degree in community health.

Despite working with my medical team to manage my AIP, my health continued to deteriorate, leaving me struggling emotionally, physically and financially. I was constantly trying to improve my health. I visited many doctors over the years, but was often treated like a drug addict, hypochondriac, or mentally ill. “You don’t look sick,” I was told again and again.

In the fall of 2009, I moved to a new state and it changed my life. I found a wonderful hematologist and liver specialist. But just as importantly, I found Mike, my rock, my protector and the love of my life.