Community Views: Reasons for Visiting Endometriosis.net
We all need community. Communities are safe spaces for growth and connection. Here at Endometriosis.net, we strive to be a community that gives back in many ways.
To learn more about why community members come to Endometriosis.net, we reached to followers of our Facebook page. We asked you to tell us: “What is the main reason that you visit our page?” More than 100 of you responded. Here is what was said.
To not feel alone
By far the most common answer was that community members come to Endometriosis.net to find connection. They are done feeling alone while living with this diagnosis. Endometriosis is more common than most people realize. However, it is not a topic that is discussed often. This leaves many endo warriors longing to discuss how this affects their bodies and their lives with others who understand.
“Because I feel so alone. And even the family and friends that care, there is no way for them to truly understand.”
“I want to not feel alone.”
“To know I am not alone in this fight.”
“To make sure I am not the only one that has the same symptoms I go through and support.”
To feel validated
For most endo warriors, it takes years to receive a diagnosis. This means years of living with the pain and symptoms without a clear name for the problem. Since endo is largely misunderstood, many friends, family members, and coworkers often dismiss these experiences. Instead, being part of a community where others have and understand endo helps members feel seen and heard, which is something all people need in life.
“Knowing that my pain is validated is a huge one.”
“To know I am not alone in my suffering. It takes a toll on you when no one around you understands the pain and problem, and how endo affects your life.”
“Validation and support! It is nice to hear I am not the only one. I am not crazy!”
To get information
When living with endo, it often helps to be your own best advocate. One way to do that is to find as much information about the condition as possible. While your doctor may (or may not) be a source of information, you might find yourself looking for more endo advice and data elsewhere. Plus, it is often helpful to learn how others living with endo are handling this diagnosis.
“For information since most of my doctors failed me. For 8 years, my doctors told me I was ‘faking’ my pain. They said, ‘You just have bad periods.’ I am happy to see people who have gone through the same and speak up about their experiences.”
“I have found a lot of really good info here.”
“To get as much education I can about my disease.”
Living with endo can feel overwhelming and challenging. At times, it may seem like there is no solution in sight. A handful of community members shared that it gives them hope to visit Endometriosis.net and hear more from fellow endo warriors who have found solutions and healing. It does get better.
“I come for inspiration.”
Thank you to everyone who shared. We are so grateful to have such an active and caring community.
Have you ever experienced a "weird" symptom and wondered if it was endo related?