Advocating for Autoimmune Disease & Women’s Health

80% of people living with autoimmune diseases are women, so it’s no surprise that it takes nearly 5 years and a visit to 5 different physicians for the average patient to get their diagnosis, according to the Autoimmune Association.

Gaslighting within our healthcare system is rampant, even more so because autoimmune conditions are largely invisible and often challenging to diagnose. Too often, patients are told their symptoms are all in their head or that the doctors simply don’t know what’s wrong.

That’s exactly what I experienced at the age of 19 when I was sent in and out of the ER three times in one weekend. I couldn’t even swallow water without my stomach screaming in pain, yet no one believed me.

Fast forward, following weeks of testing and questioning, I was finally diagnosed with Crohn’s because they discovered bleeding ulcers in my small intestine. That certainly wasn’t all in my head.

Putting The Focus on Women’s Health

Autoimmune Awareness Month and Women's History Month both fall in March, and I can’t help but think it was meant to be. Autoimmune disease is largely a women’s health issue, and one that continues to be underfunded and under researched like so many other issues affecting women in particular.

Just last year, The White House announced the nation’s first initiative for women’s health research – an initiative that came decades too late. Men continue to disproportionately hold the highest ranks in business, government, and healthcare, so it’s no surprise that when it comes to women’s health, there’s not nearly enough focus.

Without fail, every woman with autoimmune conditions I meet has had an experience similar to mine, being dismissed or disbelieved in the doctor’s office. How can we expect these women to thrive and reach their full potential in their life and career if they can’t get the health care they need?

It’s going to take a lot more than this initiative from The White House to eradicate the diagnostic odyssey surrounding autoimmune conditions. It is my hope we will see many more conversations around women’s health coming from the top down.

Businesses, academic entities, and government agencies have a unique opportunity to help create systemic change in health care, and I wrote about that in this Forbes article.

Autoimmune Advocacy

If you’re reading this and you want to do something, anything, to make a difference, I’m with you!

Here are some ways you can be an advocate beyond Autoimmune Awareness Month and Women’s History Month.

1. Listen and believe women when they express their health challenges. Don’t give unsolicited advice or question if it’s real.
2. Use your platform to spread awareness, whether that be a post to your Facebook friends or teaming up with your employer to host a company webinar. Everyone has an audience of some kind.
3. Advocate to government leaders to do better. Write letters, call their offices, sign petitions, or show up to advocacy events. Support leaders who prioritize women’s health.
4. Share your story. To fellow women living with chronic conditions, your experience matters, and it has the power to move people.
5. To all those at the top, make yourself aware of the unique challenges women face from the hospital bed to the boardroom and consider how you can leverage your power to be part of the change.

It’s time for our society to invest in solutions for women’s health that will benefit the millions of women living with autoimmune conditions in the U.S. alone.?

This is not simply a moment in March, it’s a movement in the name of women’s health and wealth. I am calling on you to help. Let’s keep the conversation going and activate the resources at our disposal to create enduring change.