Global Patient Symposium
Together for Tomorrow
March 18-19, 2023 - Einhorn Auditorium, Lenox Hill Hospital, NYC
Hello everyone. I know I am amongst endo Warriors because there's a gluten-free table over there, and I was like, these are my people <laugh>. Um, it is, it is so comforting to be amongst people who understand this disease, who understand the sacrifices that come with this disease and who are advocating for change. Um, I became an Endo ambassador in 2021, but that was not the beginning of my Endo journey. Um, like most of you, I started experiencing endo symptoms as early as the age of 12. And I mean, at the time I didn't know what endometriosis was. I thought painful periods were normal, and therefore, like so many others, I went undiagnosed for about 11 years. However, during those 11 years, I was battling another diagnosis, anxiety. I was diagnosed with an anxiety disorder when I was 14, and I was probably one of the few teenagers who actually enjoyed going to therapy and learning about their minds and learning all the different treatment options available to me.
But even though I was actively seeking treatment for my anxiety, I wasn't necessarily sharing that experience with my peers. When you're a teenager, the last thing you wanna be is different. You wanna blend, blend in with everyone, you wanna be like everyone else. And I was so afraid to share my diagnosis because I didn't wanna be called the C word, which is crazy. Um, and so I silently battled anxiety and I unknowingly battled endometriosis at the same time for years. Um, and then in 2017, I got reached out to by the National Alliance of Mental Illness, and they wanted me to just post on my Instagram for Mental Health Awareness Month. And I was like, I could do that, right? I could just post and say I support mental health, yay, yay. Or I could be really honest that I had been battling anxiety for years.
I had tried a bunch of different therapies and treatments, um, and I could be really candid. And just to remind you guys, in 2017, social media was extremely filtered, very curated. Not that it isn't now, but at the time, people were not having the conversations that we're having now on social media. So I was really terrified to be honest about my journey with anxiety, but I just felt like in order to be authentic, that's what I had to do. So I partnered with them. I wrote this, um, op-ed for Refinery 29 about my journey with anxiety. And I remember the night before it came out, I was freaking out. I didn't want it to go live. And then it did, and I was flooded with people reaching out to me saying, thank you for saying this. People I knew and people I didn't know saying, I struggle with depression, I struggle with bipolar, with this, with that.
And I was like, wow. Like there is a conversation here. People just needed somebody to start it. And that was really the beginning of my love for advocacy work. And I was working with NAMI for a really long time, and I've done a bunch of different campaigns and I've lobbied Congress with them. And then 20, uh, 18 comes around and I, my periods start getting really painful and I don't know what's going on. And I'm going from doctors to doctors. I mean, this is a story you all know. Um, and I'm told everything from its normal to its s bladder cancer. You know, there's two extremes. And, um, finally I was able to find an amazing surgeon, Dr. Iris Orbach, and she, um, uh, performed my surgery and I found out I had endometriosis. I also found out it ran in my family. Um, so I'm a big advocate for talking within your family about your own health and, um, what runs in your family.
And after I was able to kind of process everything that had happened with my endometriosis journey, I reached out to Endo found and I was like, I wanna work with you guys. I wanna do the same thing I've been doing with nami. I wanna tell my story. I wanna make somebody else's journey easier than mine was. And it's been so fulfilling and so rewarding for me to work with Endo found to connect with you all with people, um, who understand what, what living with Endo is like. And now this year I came to Endo found and I was like, there is a connection between mental health and chronic pain. These aren't two separate things I need to be doing. I need to be having this conversation together. Because endometriosis isn't just a physical ailment. It is sleepless nights, it is depression, it is anxiety, it is traumatic to get diagnosed.
It's P T S D. Um, there's so many layers to Endo and there's so many layers to living with chronic pain and not being able to show up in the world in the way that you want to. Um, and so that's why I really wanted to join the two. And so actually this month, NAMI and Endo found are partnering and there's some conversations we're gonna be having on Instagram that I'm very, very excited about. It's like my two babies that are coming together. Um, and so I, I just wanna keep talking about Endo, really talking about the emotional, um, side of it and the mental health side of it. And so that's what we're gonna be doing right now in this session. And I hope you guys get the guidance and the validation that you all deserve. Enjoy.