EndometriosisEm opens up about how the chronic illness community has become a source of strength, support, and advocacy. From dispelling harmful misconceptions about endometriosis to calling out systemic failures in healthcare, discover how shared stories inspire healing, education, and the push for change.
Through your platforms, you’ve connected with many individuals facing similar health issues. How has this community influenced your advocacy work and personal healing?
The chronic illness community has changed my life for the better in so many ways. I’m constantly inspired by hearing different experiences from people in the community, learning more about conditions that I live with, and ones that I don’t. Through the community, I’ve learned that my experiences with pain, medical gaslighting, ableism, and the impact that these conditions have on my physical health, mental health, and relationships are far too common. I’m not the only one- although it can be so easy to convince myself otherwise. Knowing that there are so many people who are facing similar issues and frustrations that I’m dealing with encourages me to continue sharing my story. I hope that it can help people to feel less alone in what they’re going through, find community, push for diagnoses, and show the support that I wish I had growing up. I also hope that by sharing my experiences and advocating for these things, it can give insight and educate people who don’t necessarily live with these conditions, and guide them in better supporting the people in their lives.
Being able to turn to a safe space that’s filled with people who understand what I’m going through is incredibly healing. Through the community, I’ve made some of the most supportive and loving friendships that have proven to me that there ARE people who will love me for all that I am, which sadly, is something that so many people in this community lack.
In your opinion, what are the most significant misconceptions about endometriosis that need to be addressed?
The misinformation surrounding endometriosis is incredibly harmful to the endo community and heavily impacts the delay of diagnosis, which averages at 7-10 years from the time of symptom onset.
A major misconception that I hear frequently is that endometriosis is a reproductive/ period disease that affects the uterus. When in reality, endometriosis is a whole-body, chronic inflammatory condition where tissue similar to the lining of the uterus grows throughout the body. Endometriosis has been found on every major organ in the body. And while many people find that their symptoms are intensified during their period, to simplify and chalk it up to a “period disease” that “just causes painful periods” completely disregards the countless people who live in 10/10 pain daily.
Something that is said to patients far too often is that painful periods are “normal” and that going on birth control will fix their problems. Birth control can be helpful for some when it comes to symptom management, but it’s not for everybody, and it doesn’t stop the growth of endometriosis.
I, as well as SO many others, have been told that they’re “too young” to have endometriosis. Studies show that endometriosis has been found in fetuses. While a lot of people find that their endo symptoms start, or progress around/after the time of their first period,
Endometriosis is one of the top 20 most painful conditions in the world and affects 1 in 10 people AFAB, yet so many of us are made to feel like we just can’t handle pain, or that we’re just being dramatic and looking for attention. Endometriosis has the potential to infiltrate organs and cause detrimental effects to the body. For me, endo infiltrated into the muscle layer of my bladder, it pinned my colon up to my ribs with adhesions essentially causing a kink in my digestive tract, making it so my bowels couldn’t function the way they were supposed to, it caused nerve damage in my leg, and more. Endometriosis is a full-body condition.
How has living with endometriosis shaped your perspective on women’s health and the healthcare system as a whole?
Living with endo, as well as other conditions that primarily impact women and people AFAB has been incredibly eye-opening. I have been met with countless doctors who gaslight my experiences, claim that I’m dramatic and just can’t handle pain, that it’s all in my head, that I need to stop wasting time going to doctors’ offices, and go to therapy instead.
The fact that it takes an average of 7-10 years for an endo diagnosis, and that there are countless people for whom it’s taken over 20+ years to receive a diagnosis, is incredibly disheartening. Endometriosis is one of the top 20 most painful conditions in the world, and almost everyone I know in the community has been met with medical gaslighting in one way or another. The fact that that’s the norm says so much.
Doctors that believe you, meet you with compassion, and want to dig deeper as to why you’re feeling the way you do should be the norm, not the exception. We’ve come a long way, but we have a long way to go.
