You Deserve Healthcare That Centers You
When men are made the default in medical research, it's women who pay the price
Long before there was ChatGPT, Claude, and Perplexity, there was “Dr.” Google. While I certainly do not recommend you ever use the internet to diagnose any health condition, my nose would be longer than Pinocchio’s if I said I didn’t spend nights Googling my symptoms long before I was diagnosed with rheumatoid arthritis (RA) and Sjögren’s syndrome. When your body is suffering, and your brain is desperate for answers, it’s no surprise that you start searching for anything that might explain what’s happening. Before long, you’re reading studies on PubMed or scrolling Reddit forums searching for someone with the same symptoms.
Maybe you’ve stumbled upon this recent study by the Garvan Institute of Medical Research, which found that immune function varies by sex. If you’re a woman with autoimmune disease, this is something you know all too well. When studies overlook sex differences, it can result in treatment options that aren’t created with your body in mind.
That begs the question: if we know that sex differences in the immune system exist, why are women still expected to navigate healthcare with one-size-fits-mostly-men health advice?
When research overlooks you, it impacts how long you struggle to search for answers, how you are treated, and how much you can trust the treatments you’re being offered. Here’s why this matters.
#1. It Can Take Years to Receive an Official Diagnosis
Healthcare teams are often trained on what to look for in men, not women. That creates serious problems because autoimmune diseases are often subtle in the early stages. You might experience symptoms for years before receiving an official diagnosis. In some instances, you might even be misdiagnosed due to a lack of research specifically focused on women. Thus, symptoms more often seen in women can be seen as ‘normal’ when in reality they may be a warning sign of an underlying health condition.
#2. Treatments for Men Don’t Always Work for Women
Only in recent years has there been broader recognition that relying on research conducted primarily on men creates challenges when developing effective strategies for women. Research has shown that certain autoimmune diseases, such as lupus, disproportionately impact Black women, who are two to three times more likely than White women to develop the condition. Therefore, women must be included in clinical research as a priority rather than an afterthought.
#3. When Women Feel Unheard, It Erodes Trust
Trust isn’t built solely through expertise, but through providers who take conscious steps to build trust with their patients. That trust is built by providers who listen to your concerns before explaining the available treatment options. Even when they are the expert in their field, it doesn’t make them the experts of YOUR body. Those who are unwilling to make your healthcare a collaborative process, might not be the best person to work with you.
When medications, diets, and workouts don’t work, you have to stop blaming yourselves for protocols that weren’t created with you in mind.
From being told to “just push through” to hearing that you simply need to “listen to your body,” you’ve spent a lifetime hearing health advice that lack the nuance needed to support women with autoimmune disease and chronic illness.
This is exactly why the EBWH Community unapologetically centers women with autoimmune disease and chronic illness. And, we want to hear from you about your experiences with the medical system.
Is there one piece of advice you’ve received that actually made you