The New Face of Fibromyalgia Advocacy with Ann & Lily Garner

Fibromyalgia Podcast®

“No matter how small, any type of advocacy you do will have an impact.” - Lily Garner

According to the NIH, fibromyalgia affects 1 in 13 women in the US. That means about twice as many women are diagnosed with fibromyalgia as are diagnosed with colon cancer, and while you're not going to die from fibromyalgia, living with fibro pain and fatigue can feel like its own kind of death. Despite this and the fact that this rate is on par with or higher than many other conditions, fibromyalgia research continues to receive less funding than its counterparts.

The massive gap in advocacy and awareness means that while every woman knows to get a mammogram each year to screen for breast cancer or annual exams for cervical cancer, most doctors have never been taught how to screen for fibromyalgia or how to treat it. Some educational institutions still teach that fibromyalgia is a psychological disorder.

If we want this to change, we need more funding for fibromyalgia research and more people like today’s guests, Ann and Lily Garner, to advocate on behalf of our community. Ann and Lily Garner join Tami in this episode to discuss their experience advocating for fibromyalgia with lawmakers in Washington, D.C. Ann is a Certified Fibromyalgia Coach® who has lived with fibromyalgia for over 20 years and her 14-year-old daughter, Lily, has been living with chronic illnesses for the last six years.

In this conversation, Tami, Ann, and Lily talk about Lily’s diagnoses and the long journey of medical gaslighting to get there, the massive difference it makes when you find the right doctor, Ann’s decision to become a fibro coach, how Ann’s experience advocating for Lily led to her working with a Certified Fibromyalgia Coach®, why Ann and Lily decided to go to D.C. to join fibromyalgia advocacy efforts, the importance of having young people as fibromyalgia advocates, what the day-to-day of their advocacy trip to D.C. looked like, the type of responses and reactions they received from lawmakers in D.C., what’s next for Ann and Lily, Ann’s work as a Certified Fibromyalgia Coach®, and more.

Tami hopes this episode will inspire you to go out there, do your part, and let's change the world together.

Note: This episode is not meant to be medical advice. Every person and every situation is unique. The information you learn in this episode should be shared and discussed with your own healthcare providers.

To learn more about the resources mentioned in this episode, visit the show notes.

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