When diagnosis is delayed, suffering is prolonged. Left untreated, disease worsens, new symptoms and conditions pile up, and healing becomes more difficult.
Claire Lapat is no stranger to this pattern. Many doctors dismissed her symptoms, brushing off her serious health concerns. The insistence for physical evidence of disease further slowed her path to treatment. Claire shares her experiences here, bringing awareness to some of our medical system’s limitations and the undeniable sexism that prevents women from getting the care they deserve.
I was diagnosed with an autoimmune disease during a global pandemic after doctors struggled to diagnose me for years.
At age 14, as a freshman in high school, I started experiencing serious abdominal pain. I brushed it off and assumed the abdominal pain was somehow correlated with my extensive concussion history and persistent symptoms. The spring of my sophomore year, I broke my hip running track. Due to the nature of the fracture, my orthopedist did some blood work which showed malnutrition. He referred me to an eating disorder clinic, making that assumption since I was young, thin, and female, in addition to being a distance runner. I knew I did not have an eating disorder and my primary care physician agreed with me, so I never went.
My hip never healed right and senior year I saw another orthopedist who did an MRI. The visualized part of the large intestine was inflamed, and he told me to see a gastroenterologist (GI doctor). All the GI doctor did was stick a popsicle stick up into my rectum and tell me I was too young for a colonoscopy.
My symptoms had worsened throughout high school, but my health steadily declined once I got to college. Freshman year I was hospitalized sixteen times, eleven times for anaphylaxis. One of my hospitalizations was for pneumonia and kidney failure. After the school year ended, I went home and bounced around from doctor to doctor.
Pulmonologists thought I had sarcoidosis until my ACE (angiotensin-converting enzyme) levels came back normal. I saw an infectious disease doctor and he thought I was “just stressed.” I started my sophomore year with no answers and my health continued to worsen. My classmates and I went home for spring break in March 2020 and never returned for the rest of the semester due to COVID-19.
“It is sexist for doctors to assume that an eating disorder is the only plausible diagnosis.”
My allergist/immunologist was getting concerned with how sick I was and the frequency in which I was getting pneumonia. I told her how severe my abdominal pain was and she referred me to a different GI doctor who wanted an endoscopy and colonoscopy right away. Both showed inflammation, ulceration, and bleeding in my intestines and stomach. Capsule endoscopy confirmed the diagnosis: Crohn’s disease.
Since my Crohn’s diagnosis, I have also been diagnosed with other autoimmune diseases including Sjogren’s, MCTD, Crohn’s-related arthritis, Henoch-Schönlein purpura, Berger’s disease, and chronic glomerulonephritis. I also have some non-autoimmune conditions such as persistent post-concussion syndrome, POTS, mastocytosis, and restless leg syndrome. My doctors believe that I had Crohn’s for eight years before being diagnosed and thus receiving treatment.
I am sure that my diagnoses were delayed due to the fact I am a young woman. My experiences have shown how biased the healthcare system is in how it treats men and women. I do not think it is wrong for doctors to ask about eating disorders in patients who present with malnutrition. However, it is sexist for doctors to assume that an eating disorder is the only plausible diagnosis, especially because this usually happens to women and girls.
I am now a senior at the University of Pittsburgh and majoring in microbiology. My goal is to go to medical school, and I am motivated by both my good and bad experiences with the healthcare system.
If anyone reading this is going through something similar, keep advocating for yourself:
Despite having answers, I still have severe symptoms and have never been in remission. My disease is extremely hard to treat because it went undiagnosed for so long. If you are struggling with hard-to-treat disease, it is not your fault, and you are not alone.
The views and opinions expressed are those of the author and do not necessarily reflect the views and opinions of the Global Autoimmune Institute. The experiences and health outcomes described in this article are unique to the author and do not serve as medical advice.