“It’s all in your head”: Recognizing the Plight of Women Living with Autoimmune Diseases on International Women’s Day

The dismissal and disbelief of women living with autoimmune diseases significantly impacts time to diagnosis and proper treatment.

By Lilly Stairs

My Story

“Why are you back here again?” a disgruntled ER nurse snapped at me.

Her tone gutted me. On a scale of 1-10, my pain was well past eleven.

It was my third trip to the ER in one weekend. Not one person believed my pain was legitimate but rather attention or drug seeking behavior.

After the nurse berated me for returning to the ER instead of going to see my PCP, I sat and waited to be seen. Question after question “Is everything okay at home? “Are you happy at school?” My Mother pleaded with me not to be too quick to ask for pain meds so they wouldn’t think I was seeking drugs.

After many more hours spent at the ER, I was admitted. Over the course of a week and a half, test after test was conducted with skeptical questions continuing to fly at me. “Are you sure you aren’t pregnant?” “Are you sure everything is okay at home?”

The doctors reported they had one final test to administer before they were “out of options”. They conducted a camera study where I swallowed a pill that took pictures as it traveled through my body every three seconds. Turns out I had bleeding ulcers in my small intestine and was subsequently diagnosed with Crohn’s disease. I lost 30 pounds because I couldn’t even swallow water without feeling excruciating pain….but it’s all in my head, right?

The “Knowledge & Trust Gaps”

Sadly my story is not the exception. As a patient advocate for the past decade, I have interfaced with hundreds of women living with an autoimmune disease. It is by no means an exaggeration when I say that nearly every single one of them has a story that mirrors that of my own.

78% of people living with autoimmune diseases are women¹ and are often diagnosed with autoimmune diseases between the ages of 15-30. Despite many remarkable advances in modern medicine, it still takes them an average of five years to get to a diagnosis².

We must do better. But how?

In her groundbreaking book, Doing Harm, Maya Dusenbery shortening the time to diagnosis begins with closing the “knowledge gap” and the “trust gap”.

The “knowledge gap” refers to the long history of excluding women from education and research. It wasn’t even until 1993 that women of childbearing age were able to participate in clinical trials. This means that we are much further behind in understanding how diseases impact women and in understanding diseases that primarily impact women. Research informs education and therefore much of traditional medical education is based on the male anatomy.

The “trust gap” refers to the disbelief of women’s symptoms which dates back centuries. Many years ago, any symptoms women experienced were largely referred to as “hysteria”. Fast forward a couple of hundred years and we’ve replaced hysteria with the politically correct term “Medically Unexplained Symptoms”…or symptoms are labeled as anxiety, depression, or menstrual related.

The knowledge and trust gaps have always been embedded in our medical system. Closing these gaps won’t be easy, but will be essential to closing diagnosis and treatment gaps.

We must collectively raise our voices

Diversity, equity, and inclusion have moved to the forefront of global conversations across industries. It is my hope that our world’s renewed efforts to fight for equality will streamline the time it takes to close the gap for women and other marginalized communities in our healthcare system.

What can you do to help?

I encourage all of our community members to keep speaking up and speaking out. On this International Women’s Day and and through Autoimmune Awareness Month, raising awareness that these gaps exist and the dangers they cause are the first step towards facilitating meaningful change.

Tip: If you’re ready to share your story, head over to our Share Your Story page to submit yours to be featured.

¹Fairweather D, Rose NR. Women and Autoimmune Diseases. Emerging Infectious Diseases. 2004;10(11):2005-2011. doi:10.3201/eid1011.040367.

²Marshall, Amy Sarah. “The Detective Work of Autoimmune Disease.” Healthy Balance, UVA Health, 12 May 2021, https://blog.uvahealth.com/2014/10/31/detective-work-autoimmune-disease/.