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Endometriosis

When One Woman Couldn’t Find an Endometriosis Support Group, She Created One

Lauren Smith, MAAlexandra Schwarz, MD
Written by Lauren Smith, MA | Reviewed by Alexandra Schwarz, MD
Updated on December 31, 2022
Reviewed by Alexandra Schwarz, MD | December 31, 2022

For many people with a chronic illness, the psychological component can be just as challenging as the physical symptoms. Not only is disease management stressful and frustrating, but it can also be isolating. This was something April Christina related to after her endometriosis diagnosis.

“In the beginning, I was in a dark place. I was depressed. I wanted and needed a support group with endometriosis because I felt alone,” says April, an endometriosis advocate and blogger. “I felt like no one understood what I was going through.”

Like many people with endometriosis, it took April many years to get an accurate diagnosis. As a result, she dealt with pain and other endometriosis symptoms for a long time before she found answers. By the time she got that answer, she wanted to find other people who were going through something similar.

A Support Group for Endometriosis … A Few Hours Away

“To my surprise, there were no support groups at the time in New York, but I did find a support group in Connecticut,” says April. Although this required a long drive, the effort often paid off. “They were such supportive women. They welcome you with open arms.”

As much as April loved the experience of the support group for endometriosis in Connecticut, it wasn’t sustainable. Connecticut and New York City are technically just a few dozen miles apart, but the heavy traffic makes it take hours each way.

Creating “Endo Brunch”

New York City has a support group or a meetup group for just about everything you can imagine. The lack of a support group for endometriosis definitely left a vacuum that begged to be filled.

“I knew that I could not be the only person in New York City [with] endometriosis,” says April. This inspired her to start her own meetup, which she called Endo Brunch. “I came up with the idea with Endo Brunch on a whim. People could come together, enjoy each other, have fun, laugh, and have a good time.”

April wanted the attendees to find not only socialization, but empowerment. “I wanted to create an environment where they would not only feel safe, but feel comfortable enough to be open and vulnerable,” she says. “I wanted them to walk away feeling empowered, and that they at least have one person that understood them.”

Finding the Support You Need

It is normal and common to struggle with mental health while managing a chronic illness. However, that doesn’t mean there’s nothing you can do about it. Finding support from others in a similar situation is one of the most effective ways to cope with the stress of a chronic illness. Additionally, April and her husband prioritize mental health as a couple and build self-care into their routine.

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“To anyone that feels isolated, try to find a support group. It definitely helped me,” says April. “If you do not have one that's near you, do not be afraid to start one on your own.”

References

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Lauren Smith, MA
Written by:
Lauren Smith, MA
Lauren Smith, MA, has worked in health journalism since 2017. Before joining GoodRx, she was the senior health editor and writer for HealthiNation.
Alexandra Schwarz, MD, is a board-eligible sleep medicine physician and a board-certified family medicine physician. She is a member of both the AASM and the ABFM.

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