On Experiencing IBD as a Woman
By Amalia Sweet
At the end of last summer I stopped eating. It wasn’t that I wasn’t hungry — I was, constantly — but rather that pretty much everything I tried to put in my stomach triggered excruciating abdominal pain.
While still in Chicago where I was working toward my master’s degree, I went to University Health Services. When tests revealed I was anemic but free of ulcers and Celiac disease, they suggested I work to reduce my stress and follow up with a gastroenterologist when I returned home to Boston later that month.
I called every medical practice I could think of in the greater Boston area and no one had availability sooner than four months out. Without a primary care physician and desperate for a diagnosis, I went to the ER. In spite of my anemia and the fact that I had lost a scary amount of weight in a short period of time, the ER refused to provide a prioritized referral and told me my symptoms were a product of me being sedentary when in fact I was sedentary because of my symptoms.
It was not until my therapist called in a personal favor with a former patient who happened to be a gastroenterologist that I was able to see one. Even then that doctor was reluctant to do a colonoscopy and suggested that they repeat the same tests I’d already had in Chicago.
Exasperated, I asked him why I was anemic. He explained that when doctors see anemia in a woman of my age (then 27) who was “otherwise healthy” they assume it is menstruation related. I AM NOT OTHERWISE HEALTHY I wanted to scream YOU JUST DON’T KNOW WHAT’S WRONG WITH ME. Instead, I calmly explained that I had an IUD and hadn’t had a period in years. Only then did he agree, “Oh … yeah, we should do a colonoscopy.” The procedure revealed intestinal ulcerations due to severe Crohn’s disease, a serious inflammatory bowel condition I had likely had for many years.
Sadly, my experiences last summer are not uncommon among the almost two million women* in the United States living with inflammatory bowel disease (IBD), an umbrella term which comprises both Crohn’s and ulcerative colitis.
Last year, an analysis from the data analytics company Komodo Health found that despite having a higher incidence of IBD and presenting earlier with “red flag” symptoms, women not only waited longer than men to receive diagnosis but also experienced greater delays in receiving treatment once diagnosed. They also found that in the two weeks leading up to diagnosis women had more ER visits and inpatient admissions than their male counterparts, indicating that women presented with greater disease severity and need for acute care.
A multicenter cohort study published this past February in the journal Inflammatory Bowel Diseases similarly found that compared to their male counterparts, women with IBD, “often experience misdiagnosis and diagnostic delays due to process failures and implicit bias.”
IBD diagnoses are chronic, often debilitating conditions which are best managed with early intervention. Delayed diagnosis and treatment places women at heightened risk of poorly managed disease and complications. Moreover, these findings come as part of a broader “epidemic of misdiagnosed women,” wherein women’s pain is routinely dismissed and/or overlooked by their providers.
Worse still, women are often gaslit into believing that their symptoms are “all in their head.” A survey by the American Autoimmune Related Diseases Association found that 45% of people who would eventually be diagnosed with autoimmune diseases such as Crohn’s and colitis — 80% of whom are women — were initially labeled as chronic complainers or hypochondriacs.
More than eight months after finally receiving my diagnosis, I cannot help but consider myself lucky: I am fortunate that I was equipped with sufficient medical knowledge to advocate for myself and ultimately receive a proper diagnosis and care. At the same time, I shouldn’t have to have been. The onus should not be on patients, many of whom are less privileged than me, to convince their health care providers to take their pain seriously. They should not bear the burden of proving that femaleness is not a disease state.
Combating misogyny within medicine must begin with promoting greater awareness of its pervasion and manifestations in health care practice and the tangible harms it inflicts on patients. Both trainees and practicing clinicians ought to undergo anti-bias training. Further, there is a need to better study how conditions such as IBD present in female bodies, as they often manifest with distinct symptomology, and to educate medical students and doctors about these presentations. While the factors contributing to gendered disparities in health care are numerous and eliminating them complex, one intervention is fortunately both simple and readily available to care providers: listening to patients.
*By women, I specifically mean cis-women (i.e., those assigned female at birth who identify as women). There is very little research on the experiences of trans-patients with IBD. The one study I could find reviewed the cases of a mere three patients.
