Endometriosis Foundation of America
Virtual Patient Conference, October 16-18, 2020
Endometriosis Advocates:
Supporting yourself and others with endo Les Henderson, Lauren Kornegay, Samantha Denae, Kylie Gomez
Melissa:
Welcome, everybody. Thank you so much for being here today. We have incredible panelists, endometriosis advocates. I'm so excited to chat with you all tonight, really appreciate you being here, look forward to getting to know all of you.
So let's please welcome ... I'm excited to introduce you to Samantha Denae and Lauren Kornegay from ENDO Black. We have Les Henderson from endoQueer, and we have Kylie Gomez who is a writer and a speaker. Thank you all so much for being here today. I'd love to have you just give a little bit of background about yourself and tell us about your organization if you're with one. I'd love to start with you, Lauren, please.
Lauren Kornegay:
Thank you. As you said, my name is Lauren Kornegay. I am the founder of ENDO Black. We are an organization that focuses on advocating for African American women and women of color who are affected by endometriosis. We've been working on missions like this for about five years now. October will be our fifth anniversary so we're really excited for that. We have ambassadors' programs, we have a great staff. All of our staff members have endometriosis. We do different things like Mocktails and Cocktails and try to have meet and greets for women across the nation as well as in other countries to make sure that women are being heard. Although we are an organization that is focused on advocating for African American women and women of color we are inclusive and we are here to support everyone. It's important that we make sure that endometriosis is getting enough support and that we're making some really loud noise, which is always what I say, or shake the table.
Melissa:
I like to shake the table, absolutely. All right, Samantha, tell us a little bit about yourself.
Samantha Denae:
Hi, you all. My name is Samantha Denae. I'm known as the Endo Educator on all of my platforms. I spend my time advocating about endometriosis and period healthcare as well as general women's reproductive health issues. I spend a lot of my time going to high schools to teach students about endometriosis and period healthcare and how to advocate for themselves when speaking with their doctors or with their family members, especially with their parents when it comes to endometriosis.
I also spend a lot of my time speaking with a lot of women about how I have healed my endometriosis and my 90 day period holistically through spiritual methods.
Melissa:
Thank you so much, Samantha. Okay, Les, tell us a little bit about yourself and your organization.
Les Henderson:
Okay. Hi, everybody. I'm Les Henderson. I founded endoQueer. It's a support space for LGBTQIA+ individuals dealing with endometriosis and similar illnesses because a lot of times, especially with an illness like endometriosis, normally people relate it to cis women, when many others just across the spectrum are dealing with this illness as well. I recently had an online summit, and that will be released soon. I'm just very excited to be able to provide the support that I wish I had had when I experienced endometriosis at its worst, which you'll hear more later.
Melissa:
Absolutely. Thank you so much. Kylie, please tell us a little bit about yourself.
Kylie Gomez:
Yeah, I'm Kylie. I used to work in tech for a really long time, and I always had a really hard time balancing my chronic illness with my workload and what was expected from us in that world. So I recently left tech and I'm a writer and a speaker about all this. I'm currently working on a book about endometriosis and other chronic illnesses, particularly invisible ones. I'm also working on an interview series right now about balance at work and just generally chronic illnesses, debilitating illnesses, taking care of sick parents. We all struggle with that balance. So those are the things I'm working on right now.
Melissa:
Thank you so much. And you had somewhat of a viral post in LinkedIn which I think we'll get more into in our conversation, because I don't think endometriosis is talked about very often on that platform so I'm really interested to hear more about that. Thank you all so much, and thank you again for being here. I really would like to hear from all of you, why is advocating endo so important to you? I know we all suffer from the disease, but what made you start to advocate for it and build either your organization or leave your job? I'd love to go in the order that we just introduced ourselves please, if we could start with you, Lauren.
Lauren Kornegay:
Yes. For me in particular, I was diagnosed with endometriosis on March 18th, 2011. With that being said, I went through a couple of situations where I could not find any information about endometriosis with African American women or women of color. When I first was diagnosed I didn't really think much of it. I just thought it was another thing that I had to figure out in my life. I did not understand that it would be a life journey. So after being diagnosed I ended up being put back in the hospital for a situation that happened, and I realized that endometriosis is very, very serious and I needed to start taking it more serious than what I already was taking serious. So I started doing research, but then once I started doing research I could not find anybody that looked like me. Of course you have Tia Mowry, you have Whoopi Goldberg, but for an average woman who is not famous it's kind of difficult to get in contact with these women and to have conversations about how does your body respond to this? Or whatever the case may be. I ended up starting ENDO Black in 2015 after going through some battles from 2011 to 2015. I really just wanted to create a safe space for women who really, really need a support. I found myself a couple of times going to a lot of support groups and asking questions [inaudible 00:06:57]. I always kind of received a negative response, so it kind of left me feeling sad about endo, but it also left me feeling sad about being alone and not having support and telling me it doesn't matter if you're African American or Hispanic or Native American. I don't want to say that it doesn't because it does.
Just for example, Les talked about how she's in [inaudible 00:07:25]. Having an endo sister in the same county as you alone is important because if I need to I can go to her and we can talk to each other about it, we can connect with each other. We can say, "Hey, this is the grocery store that I shop at because X, Y and Z." So people have to understand that it's very, very important to have something that's relatable to you, regardless if it's your ethnicity, location, anything of those. So that's really why I started ENDO Black. Like I said, starting it has been amazing and it has grown past my expectations, but I'm so, so glad because I've been able to connect with so many women like you because of that platform. So I'm really excited.
Melissa:
You guys are doing amazing work. Congratulations on five years too. I mean, that's awesome. All right, Sam.
Samantha Denae:
For me, I was diagnosed with endometriosis in 2014. After I almost overdosed on codeine. From there I didn't expect to become the Endo Educator so to speak. I began looking for information about endometriosis but couldn't really find a lot on it, and I couldn't find a lot of women who looked liked me, like Lauren said, who had endometriosis. It kind of started out with Nancy's Nook on Facebook. That's kind of where I started to learn more about the disease itself. From there, being on different treatments, on different birth control treatments that were not working, Lupron treatment put me kind of at a depressive state of mind with the menopausal side effects and everything. It was like one day I just woke up and said, "Maybe I have this disease because I'm supposed to speak out about it. Maybe because nobody else knows about endometriosis and nobody else talks about it, maybe I was given ... " It was kind of like what are the odds that I have a condition that nobody really knows about, nobody talks about, but yet one in 10 women, they say, are affected by it? From there it just kind of snowballed into speaking out about it so people would know about endometriosis to people kind of gravitating towards me about it. Friends would tell their other friends about endometriosis and start advocating for the people that they know. When people say, "You know, it's just your period. It's not that bad," I have friends that will say, "No. I know somebody else who has this condition and she is not lying. Something is really wrong with her because I know someone else who has the same condition."
It's kind of snowballed into me just looking for somebody who looks like me with endometriosis to me being the person that other people look for who looks like them who has endometriosis. And for that I'm pretty grateful for it. I didn't expect to find out that I have endometriosis for it to snowball into this journey but I'm very, very appreciative for it to be able to help those women who don't have anywhere to turn, because we were all there when we were first diagnosed with endometriosis, we didn't know where to turn to. So it's a blessing to be able to advocate.
Melissa:
That's such a beautiful way to look at it. And for educating, when you go into schools do you find that it's very well received and that people are just so grateful that you're bringing this information? Because I know at that young age if someone would have come into my school and talked to me when I was doubled over in the nurse's office not able to function ... Do you feel that you get a great reception from some of the students?
Samantha Denae:
I do. You know, kids are tricky. When they're sitting in class and they're throwing [crosstalk 00:11:18], "Who is this lady coming in to talk to my class about what? What are you here for?" But in the beginning they're like, "I don't want to hear this." But once I get to my personal story and I start to relate to them and the things that they go through, that's when it starts to click for them, like, "Okay, we should really be listening." The teachers are very grateful that I come into the schools to discuss things like this because it's not in their curriculum for them to do it, and so being able to teach about it versus maybe pulling a student to the side and kind of just giving them their personal feelings about their period or how to handle their periods, it's so much more rewarding to be able to teach the whole class because it's not just the girls that will sit in the class. The boys will sit in the class too to learn things about the woman's body and about endometriosis because you never know who they live with that could be struggling with the same things, and then they can pass the information onto the women that they know in their lives.
Melissa:
And support. I think that that's such an important part too; understanding it so you can be a better support.
Samantha Denae:
Exactly.
Melissa:
Les, tell us a little bit about your journey.
Les Henderson:
All right, I'm not going to take up the whole hour with this but, wow, so it's really been a journey. I mean, I've been telling my story for years and a lot of times I've felt like it fell on deaf ears. A lot of people were like ... You know, because not only am I Black but I identify as a masculine of center lesbian woman, so it's like I still recognize who I am and all my intersections, but it wasn't always like that at the doctors or the hospitals or the clinics. I even had one doctor just say, "Well, you could just get yourself gutted. You know, you live that lifestyle, you seem like you're not planning on having no kids. Let me just scrape everything out." I mean, it was a doctor, but I definitely canceled that doctor. But really, I just didn't want people to feel alone. I wanted other people in the queer community to know, hey, I'm dealing with this, I'm being upfront about this, because I have people that's like, "Girl, why you putting all your private business about your privates online like that? What is going on?" But I say, you know what? Somebody has to do it because in 2016 I had a lung collapse. Well, I would have two lung collapses in one week. That was due to endometriosis. They told me that after I had the surgery. I was just shocked because I was diagnosed with it around about 2014, but I had no idea that endometriosis could even go outside of the uterus, go into the lungs and other parts of your body. So after that I went into a depression. I just felt isolated, that people ... There was a lot of fall outs that happened with people because people just looked at me as being weak and sick and lying, or just like, "Girl, you better just take about 10 Advils and stop complaining." The support groups I found were okay, but they were still very ... It was still very gendered. It was still, for the most part, straight women, or cis presenting women. It was definitely a journey.
I remember at one of the support groups ... I mean, you know, they meant well, but at one of the support groups, they said, "You know what?" ... Because I think we were talking about pain and many people there said, "Well, my boyfriend, my husband, I'm so glad he makes it so I can stay home." And I said, "Well, shit, I have to go to work. I still have to go to work. I can't just stay home." So one lady says, "Well, you know, you're here in DC. You can find yourself a rich woman so you can also lay down all day." I was like what in the world?
So then when I went online and I noticed I didn't really see much ... Because usually around queer health you see, of course, HIV, Aids, cancer, PREP, being safe as far as physical sex, but nothing really around endometriosis. So I said, "You know what? Screw it. I'll create this space and see what happens." It's just been a big outpour of support. Even on here you all, Lauren, Samantha, just so many people that have been so supportive of this. I'm definitely appreciative and I'm always appreciative when I get messages, almost every day, about being so thankful. They're like, "Hey, I'm [inaudible 00:16:00] of the queer community. I'm also dealing with this, so thank you."
It's definitely important just for everyone to continue to speak up and speak out. Powers in numbers.
Melissa:
Yeah, absolutely. I agree with that. I remember when I started advocating, it's hard to go out and talk about yourself publicly with something that feels so private, but getting those messages, which I'm sure you all receive all the time, propels us to keep going forward because we're not alone in this journey and there are so many people that need our support. That's why I feel like advocating, even though you're putting yourself out there, is so important because people need us to advocate for them.
Okay, Kylie.
Kylie Gomez:
Yeah, my journey was really interesting, as all of yours have been. I was diagnosed back in 2015. I really self-diagnosed at that point, which showed you the lack of care that I was getting for a really long time, which I'm sure none of you are at all surprised by.
I realized when I had my second botched surgery after that same surgeon had put me on Lupron without telling me anything about what it was going to do to my body, I was like, wow, this whole industry is just royally messed up. I have to go out and find every piece of information for myself, I don't know anybody with this disease. I felt like ... Like everybody, we feel so alone, especially, I think, in the beginning when you really don't know what's going on, when you're going to the ER regularly in the middle of the night, all those pieces. And then I realized how much we don't address any of these things at work. We expect people, especially people with disabilities, I think, and invisible disabilities, to just push through. We expect people to be able to put work first, which is for a lot of us impossible some days, right? Of course we want to. Nobody wants to be sick and at home. I kept getting all these questions even after I'd been like, "Yes, I have this incurable disease that will not be going away," of like, "Well, when will you be back at 100%?" I was like, "Well, what about the group that can never get to 100%?" And there's a big group. That's not even just endometriosis. That's Lyme disease, that's sickle cell anemia. There's so many different kinds. That's when I first published my first blog at work openly talking about why flexibility at work matters and why we need to be flexible with people because of that, and it kind of started this really interesting conversation in my workplace where we started what we call a Chronically Chilled Slack Channel. So it was anybody with a chronic illness was welcome to join it and we'd talk about our grievances and what didn't work and why our benefits sucked and stuff like that, right? So that really started to do it. I talked a lot about remote work and why we need to enable that for the disability community and all that stuff. Then that led me into talking about it more and more. And then I realized that I ... At the workplace I was at I went and talked to our head of sustainability, I went and talked to our head of diversity, I talked to our head of benefits, and it was kind of like, "Oh yeah, we'll work on that eventually." You know? I was like, "This is hurting people right now and nobody's talking about it."
That's when I did that big LinkedIn post and I ended up leaving my job because I was like I'm not going to sit here and just be okay with this not working for a huge subset of people, and I got thousands of messages from people. I never expected it in a million years. I was like, "I'm not a big deal. This is going to be fine." Then so many people reached out to me and I realized how deep of a problem this is. Obviously endometriosis affects all of our life, but I think that the pressure particularly that America puts on us to be productive workers makes it also really hard and complicated.
Melissa:
Definitely not a topic that I feel is talked about enough either. I mean, I do feel that we all talk about endometriosis and we help to define what it is and some of the things, but the workplace, I do not ... I mean, how does everybody else on the panel feel? How has everybody gotten through surviving working?
Lauren Kornegay:
Well, I will say that luckily for me my manager has been supportive. I do think that from the beginning I tried to communicate as much as possible. Not too much. Don't tell him too much because he's still a male and he doesn't understand, but I tell him just enough so that he understands that, "Hey, this is a lot. I'm going through something. I really have to go home." And I may have those moments where I'm nauseous at work, where I have a headache, where I am having brain fog, or where I may have thrown up and I had to be like, "Look, I can't do this today." He's listened to me and he's allowed me to go home and didn't ask any questions. Ironically, he thinks that his wife also suffers from endometriosis. So it's like that little area kind of just ... Not made everything better, but I think he's trying to understand a little bit more because of his own personal experience with it.
Also, previously in my last job in 2015 and '16 my director had endometriosis. I had a moment where I had to be rushed to the hospital from work. It was very, very embarrassing, but I was in an all staff meeting and they had food, and everybody knows I love food ... Especially free food ... And when she realized that I didn't eat the food she said, "Something is not right with her." I left the meeting, she came to my office, and she said, "I'm going to rush you to the hospital right now." So she took me to the hospital. My aunt and my uncle met me there. And then after me and her ended up having a conversation and she said, "Yeah, I have endometriosis." I said, "That is by far the craziest thing ever."
Melissa:
Wow.
Lauren Kornegay:
For me it's been okay.
Melissa:
Yeah. Anyone else have a bad experience? Or tactics that you can provide to at least talk to your employer if you are struggling?
Well, kind of same as Lauren. In 2016 the job I was at at the time ... Actually, I was at a work conference for work when it happened. I said, "Well, I'm not feeling well," so I took an Uber to the urgent care that was nearby the hotel. I just thought I was having trouble with breathing. I just thought maybe I was doing too much. And then when I went to the urgent care they said, "We're going to call you an ambulance. Your lung is 80% collapsed."
Les Henderson:
Little did I know at the time, my two directors at the job I was at at that time, they were also dealing with endometriosis. One of the directors had a hysterectomy, and the other director, she just kind of waited it out through menopause. So they gave me about a month, a month and a half off. They let me work from home. However, I've had jobs that ... I mean, right now with COVID, my current job, I am at home, but for other jobs I was told ... I had a boss once at a warehouse ... This was back in the early 2000s ... Just literally threw a box of BC Powder and said, "Just take a couple packets." And then it was a lady that said, "Girl, I was going through that. You better get your ass some Advil. We got too much to do over here. We've got too much to do over here. You talking about something you need to go home over a bad period. Girl, I'm dealing with that."
Now in the early 2000s all I knew was that I had bad periods. I was not aware of endometriosis, but I just knew something was wrong because I was just ... I was sick on my periods a lot. I had people literally, "Here, you better take this BC Powder. Girl, you better take your ass about nine or 10 Advil."
A lot of times, unfortunately, especially if you're in the service industries or other industries where you have to be on site, so with that you've just got to keep advocating. If you are unionized definitely try to go through your union and just keep doing what you have to do. Sometimes, unfortunately, you may have to go somewhere else. I mean, some friends of mine that are going through endo were like, "Hey, they fired me. I've been taking too much time off."
So that's something ... I think that's the next part of dealing with endo and just any chronic illness like that, that we all just need to continue connecting, like okay, chronic illness and dealing with the workplace.
Melissa:
Yeah. Yeah. That just brings me to our next point about just advocating, and advocating in general, advocating for others. Everybody here advocates for others. I'd love to hear more about 2020 and what that's changed for advocating for others from all of you, but I think the workplace is something that we haven't even ... And, Kylie, I want to talk more about that as we get through just 2020 and advocating ... That's just something ... That subject hasn't even ... At least as far as I've seen it ... We haven't even crossed that bridge unfortunately. And how to even talk to your employer when you have a chronic illness like this because no one can see it so people assume you're faking it, which is so untrue.
I'd love to hear Lauren, Samantha, Les, about 2020, what you've been doing to advocate, things that you've had to do to pivot with endoQueer and ENDO Black. What has been going on this year and what are you guys working on?
Lauren Kornegay:
Well, for ENDO Black it's been really interesting. Normally we have our annual meet and greets. We did one last year. We were set to do one this year. We were also set to go speak in New York at, I think, two events and then go to Atlanta for the Endo Expo. And then March happened and COVID said no, so we had to figure out another way.
I think that for the most part we kind of sat back for the first month or so, just to kind of [inaudible 00:26:25] what was happening, making sure that the ambassadors were okay, making sure that we were okay, trying to learn more, because we didn't know what was getting ready to happen. But as time progressed we learned that we're going to be here for a while so we might as well get comfortable. Let's figure out some things to help our endo sisters.
It seemed towards April and May we were starting to see a lot of women in general with depression, a lot of women having mental health issues, a lot of people just trying to deal with their self. A lot of people lost their jobs. There was just so many things, so I wanted to create something where we were doing constant discussions and having check-ins so I could see people's faces to make sure that we're talking about different things. We also felt like with COVID, of course it is a terrible time, however, for everybody being stuck in the house, this was an experiment time for us. So now, people that don't know their diet, let's figure out what your diet is. What can you eat? What can't you eat? Let's figure out some of the things that we can do. What's great for our self-care? Can we walk? Are we walking outside?
So we did a walk for Endo Campaign. We started a Mocktails and Cocktails where we would have maybe two or three guests come on and discuss healthy eating habits. We talked about sex and healthy relationships. We talked about beauty, skin, hair products. This was the time to experiment. For people that don't know, I did cut my hair. I had locks originally. And this was the time for us to all go through our phases and figure things out and probably just play around with products to see if we're having reactions to them.
This is what we tried to encourage people to do. We also talked about different recipes. I think I've learned a lot from this pandemic, during this time, from endo sisters. I think the events that we've had we've learned a lot from. I think that that was how we had to kind of pivot our attention to make sure that women were okay. I was very nervous about the mental health of a lot of women and a lot of people just having to be in the house by their selves. A lot of people had maybe pets, some people live with their families, but for those endo sisters and endo warriors who live by their selves, that I kind of felt uncomfortable about that and I wanted to make sure that we were keeping in touch with them at least a little bit, you know?
Melissa:
Yeah.
Lauren Kornegay:
Something simple, not too much. I know we get so busy and we still had to do a lot of teleworking, but I wanted to somehow keep an eye out on them if I could.
Melissa:
Do you feel like you were able to connect more with the community because Zoom just allows access for people all over the world?
Lauren Kornegay:
It does. I thought that that was pretty cool. The only thing is the time difference, but it wasn't that bad. It allowed us to ... Like right now Samantha is in Atlanta. It allows us to get together and talk to people and see people's faces and go over different topics.
I don't know how many times we've had discussions on Zoom or WebEx or Google Meet about endometriosis over the past five months. It has been exciting. Samantha and I have talked on numerous platforms. Les and I, we've been on numerous platforms together. So it's just amazing how we're able to be on a platform and connect via Facebook or Twitter of Instagram. It's just amazing because even after we can still replay this over and over again and I can go back and talk to people about it, and if anybody has any questions we can figure it out.
So it is a really great thing. Even after the pandemic I still want to use Zoom because I don't want to leave my house too much.
Melissa:
It's definitely allowed us all to relax more. Sam, what about educating? Have you been able ... ? Obviously you can't go into schools or anything, so has there been any digital ... ? I know the foundation is working on something more digital, but there's not really anything you can do at this time, right?
Samantha Denae:
No. I have been trying to figure out what am I going to do. I've kind of just been playing it by ear since the school season just started, just trying to see when they're going to allow students to go back into the school, if they are.
Melissa:
Yeah.
Samantha Denae:
Because here in Atlanta, depending on the county, some schools are allowing some of the students to go in on certain days depending on if they have any virus issues. Some schools aren't even letting kids come back until next semester, so it really has been just me trying to figure out what the school system is going to do.
Melissa:
Yeah.
Samantha Denae:
What I do plan on doing for right now is maybe recording my own session and then just sending it out to the teachers and just have them [crosstalk 00:31:42] the curriculum because I don't know what they're going to do with the schools. I would love for them to be able to say they're going to bring the kids back, but that [crosstalk 00:31:52].
Melissa:
Yeah.
Samantha Denae:
I don't know if that's really going to happen anytime soon.
Melissa:
I think that's a wonderful idea though, to record something, or even if they would allow you to do a Zoom or something like that.
Samantha Denae:
Yeah, if they would allow me to do a Zoom during their class I'm more than willing to do that as well.
Melissa:
Yeah.
Samantha Denae:
It's kind of hard with getting out to the teachers [crosstalk 00:32:12], so I'm probably going to do some pop-ups at some schools.
Melissa:
Yeah, okay.
Samantha Denae:
And talk to the teachers at the schools. Here in Atlanta ... I don't know about anywhere else ... But the teachers have to go into the school building to teach.
Melissa:
Interesting.
Samantha Denae:
Yeah. So the kids don't come to school but the teachers do. I'm probably going to do some pop-up [inaudible 00:32:34] and talk to some teachers, especially the schools that I've already been to, and see if we can work that into their curriculum.
Melissa:
Yeah. I think that's a great idea. Les, what about ... ? You just had a virtual conference?
Les Henderson:
Yeah. Yeah, and you know what? It was great. I enjoyed it. I did it on my birthday to just kind of celebrate not only still being here, because 2016 was a scare ... I thought I was dying. I was crying in the ambulance. I thought it was over for me. But I realized I had a leash on life. And then as I'm getting endoQueer really ramped it, it's just ... It's just these tools like Zoom, Instagram, Facebook and other channels people have mentioned on here, it's been really helpful. And even if people can't join it live, just having that ability to record it and then everybody can watch it later, that's definitely been wonderful.
It's something that as well as what everyone else said here, even when all this is over, the virus ... Hopefully soon this mess will be over ... But I still want to keep this going because I have so many people say, "Even when there was no virus I can't really get out the house." I can recall days where I was crawling to the bathroom from my bedroom, the pain was that bad, so sometimes I would miss events just because I was in so much pain. Now many others have been telling me the same thing, so it's definitely something I want to continue to do even when everything goes back to normal.
Just other than that, the importance of really grouping up and just realizing there's more people out there, and people seeing, hey, there is a space for them. Everybody can get together online, people can share their issues or anything that's helped them. You know, I've been finding out about things from people as well, like different heating pads and CBD, just so many other things from everybody. I really dig just being online like this, and of course, still incorporating, as endoQueer grows, physical events, but definitely this is something for me that's going to stand, 1000%.
Melissa:
Yeah. I definitely feel like I've been able to just connect with so many more people. I do miss the in person events and actually hugging humans, but the connection has been ... You know, easier to connect.
Kylie, what about ... ? So you left your job just recently. You had a post that went crazy on LinkedIn. When you posted that, first off, were you nervous about posting about endometriosis on LinkedIn? And then did you expect it to literally go viral?
Kylie Gomez:
Yes and no. I definitely did not expect the reaction that we got. It really showed me how many people are craving these conversations as obviously you all know doing all this work. But I was really surprised at the amount of engagement I got on such a professional platform, you know? I've pretty much stuck to mostly Instagram, Facebook and then doing my own personal blogs and stuff, so this was the first time that I'd really posted on LinkedIn. I wanted to make it clear that tech does not make it accessible.
The accessibility in tech, it has a long, long, long way to go, and I wouldn't even say the place that I was at was one of the worst, I'd say it's one of the better, and that's how I know we have so far to go because I, as a privileged cis white woman had that kind of experience with having a disability. I was like, well, what about my coworker that's the Black trans woman? What is her experience like if mine is this bad? So I had this realization.
And then so many people started reaching out to me about it of like, "I struggled with this. I struggled with this." All of these people started exchanging doctors. We all know how hard it is to find an excision specialist, right? I was like, oh yay. My excision specialist that did mine in November was listed out like seven times. I was like okay, that's good, people know him.
It was kind of this amazing little community and people were very supportive. One of the things I was surprised by was actually the level of male engagement. There's actually a ton of men that were getting involved which really surprised me. I've always felt like women have more of a natural empathy, and then obviously it's primarily women that have this disease ... Of course not exclusively ... But I was surprised at the amount of cis straight men that were part of the conversation, and so many people. It just shows, I think, how pervasive health is, regardless of what it looks like, right? Because I felt like that was really what started happening with that post, was everyone was talking. I had people reach out to me where they had cancer, or they had a mom with MS. It was a huge spectrum, it wasn't just endometriosis.
It was a really cool, interesting experience, and I've gotten connected to ... I'm speaking with a woman who's writing a book about why people leave great jobs and it's specifically through the lens of health, which I think is awesome. I'm so glad she's writing that. And then I'm speaking on a podcast about it as well because I think that ... And I spoke with a reporter at Bloomberg about it too because she's trying to look into chronic illness within the workplace, because I really don't think that specifically has been talked about very much and we all struggle to balance it.
Melissa:
100% we do. I couldn't agree more. For anyone who's watching, are there any tactics ... Maybe like one or two or three tactics that you could provide that they could at least maybe try and talk to their HR or their employer? Some people work at family businesses that are really small, or even like what Les was saying, in a warehouse where no one's willing to listen to you. Do you have maybe one or two tactics or phrases that people could maybe use to hopefully help their employer understand?
Kylie Gomez:
Yeah, totally. I've found a lot of power ... And the hard part is that all of this is dependent on you. It's a lot of work, right? We all know how much we all have to do just to live comfortably in our own chronic illness and to get other people comfortable with it, so I kind of want to state that first.
I've found a lot of success in going actually directly to a lot of my coworkers, a lot of my peers, and working with them to be like, "This is what this is. This is what this means. When I say I'm fine I'm at a four. When I say I'm not fine I'm at an eight." So trying to kind of walk them through what this disease actually meant so that I could have other advocates on my personal team that ... You know, you don't want a teammate that's going to throw you under the bus or assume you're lazy or anything like that, and unfortunately I think that America kind of creates that assumption a lot of the time with people with disabilities.
I felt like, okay, I need a bunch of people that are on my team, people who know I'm smart, who know I'm good at my job, who understand that I have this really challenging situation. I think that we should do that more in general because we all have different layers of privilege. So as a person with a disability but also as a white woman, I have a big leg up in comparison to a lot of people as well and I still felt like I had got no resources. So I got a lot of coworkers together. We started a Slack channel about it. And then I started gathering data as to what's everyone struggling with? Even outside the endometriosis community specifically, but for anyone who's chronically ill or really struggling with something like this. What's the consistencies of the lack of care? Do we have the right benefits? You know, those pieces. And then I took that and I brought it up to ... This is going to depend on, obviously, the company that you work for ... But I brought it to our head of benefits, I brought it to our head of sustainability, and I brought it to our head of diversity along with my managers because I was like, "First of all, I want you to have to record that I did this, and even if nothing happens that I did it and nothing happened," because I think that's important. Then it was to the point where it kind of got up to our chief people officer and stuff like that. And so I think you have to get advocates around your level, similar level, just to back you up and make you feel better in the day to day. And then I also think you really need executive advocates. I know a lot of you guys mentioned when directors were helpful to you. Obviously that makes a huge difference in our experience. And then I also think giving feedback regularly is really, really important. They have to record every time you give feedback to either your employer relations team or your HR team, and so if you maybe can inspire a few other people with chronic illnesses to do it too then they're hearing it from different directions and I think they almost can't ignore that stuff when they hear it from different people.
That was kind of what I was able to do. If you're comfortable speaking publicly I felt blogging internally at my company was super helpful, because I'm a writer by nature, that's just how I can best communicate, so to be able to list out endometriosis is like cancer, yes, it's getting worse. Just explaining that in writing and directing people to it when they're asking me about my illness was really easy and then I didn't have to do it over and over again, you know?
Melissa:
I think those are extremely helpful tactics. I agree with you. Always going back to empathy. I mean, everything that we're talking about, nobody knows what's going on behind closed doors in anyone else's life and I just think that if we can get more empathetic as a community and as a world it will help, but it takes amazing advocates like all of you to speak out about something that may not be very comfortable but you put yourself out there to help other people. Kudos to all of you for the amazing work that you do. As we wrap up I'd love to just hear one thing that you want to say to the community about what's something that they can do to advocate for themselves when they have endometriosis? Lauren, I'll start with you.
Lauren Kornegay:
I think one thing is the research. It is imperative for us as advocates, or being your own advocate, is to do proper research to figure out what works best for you. A lot of times we talk about what works. All of us have endometriosis, and I know for a fact that everything that you may do, Melissa, or everything Samantha may do may not work perfectly for me, and that's perfectly fine. I think it's important for us to just make sure that we are aligning ourselves up with people that are doing the research, the proper research, and not passing judgment across the board to anybody for choosing their type of treatment because that's them. So again, like I say, the first thing and the most important thing you can do is advocate for yourself, or if you want to be an advocate for other people that have endometriosis or whatever, is to do research. That is the key to a lot of things that we do.
Melissa:
Agreed. Sam, what do you think?
Samantha Denae:
I think ... Or at least one piece of advice I can offer, especially if you're unsure if you have endometriosis but you feel like you have the symptoms that are associated with it, I think the first thing ... Or at least for me ... Getting in front of the mirror and looking at yourself and telling yourself, "I'm not crazy."
For me, I thought I was going crazy for the longest. I thought I was making up the symptoms in my head, and that stopped me from being able to tell the doctors what was really going on because I didn't believe myself. I think that to advocate for yourself in the best way possible you have to not only believe yourself but you have to trust yourself and what's going on with your body, and that comes with really knowing your body and knowing yourself because nobody can tell you what you're going through but you because you're going through it. Doctors will try to tell you, "This isn't happening," or, "This is the reason why it's happening," and you feel like it's something totally different than what the doctors are telling you or projecting onto you, really know within yourself what your body is telling you and don't let anybody else try to deter you. You can always get a second, third, fourth, fifth ...
Melissa:
Yes.
Samantha Denae:
You can get however many opinions there are, don't just stop at the first person just because they don't believe you. As long as you believe you that's all that matters.
Melissa:
Yeah, absolutely. Les, what about you?
Les Henderson:
Same thing, piggybacking off of Lauren and Samantha. Definitely the first thing I would recommend is when you feel funny, if something don't feel right, even if you can't go to the doctor ... We know there's issues out here with insurance ... And especially the queer community, even be able to have a job with benefits to even really access decent healthcare, which is a whole nother conversation ... I would be on this all night talking about that ... One thing is don't let people tell you, like they said, how you feel and what's going on with you.
I was listening to a lot of people. I mean, if I had listened to several OBGYNs or even doctors I would be dead. I had one OBGYN that gave me a syringe and a little bottle of liquid and was like, "You take this and you'll be fine and then I will see you in a week," because in a week I was scheduled to have a hysterectomy with this doctor, and when I took it over to the CBS pharmacy the pharmacist was like, "Well, I'm glad you brought this over here because you would've accidentally killed yourself if you had did what he said."
I mean, of course disciplinary measures happened with that doctor. I mean, I was still in shock. And then another OBGYN I had ... And I'm not knocking any medications, I'm not knocking Luprons, it's definitely not an attack on that or anything else. Whatever works for you works for you, but I know it didn't work for me. And I just said, "Are you sure?" But at that time I knew I still had to go to work. This was another job where by then I had gotten some write ups and everything for being absent, so I was like, okay, I need to do what I need to do, so I allowed this person to just give me the Lupron even when I had concerns. To keep a long story short, I had to go back to that doctor within a few months to say, "Get me up off this Lupron," because it was just hell. I don't even want to go into it. But just keep speaking up for yourself. If you have bad periods don't just allow someone to do what people did to me and throw a box of BS Powder or have you taking 10 Advil. Definitely do what you can. Definitely continue to be heard, even if it's just ... May I give everybody permission here just to message me if you feel like you just need somebody to talk to about it? I mean, have hopefully someone around you that you can even talk to because suicides have happened over endo and continue to happen over endometriosis with depression and with your pain, and then people losing relationships. Just a lot of BS happening behind it. So definitely be ... There's some situations you're going to have to be your own advocate for a while, but definitely reach out to us. You can reach out to me especially in the queer community. Just definitely reach out to somebody and know you are not alone. We can come up with a plan together, because even if I don't know then maybe I can be like, "Well, hey, Lauren, so and so, do you have any advice for this?" We can all do that with each other. So please, I am begging all of y'all out here today to please reach out to somebody. Even if you don't have a doctor somebody can help you.
Melissa:
I love that, Les. I just want to piggyback on that and say yes, this community is so much larger than when I started to go on my endo journey. Reach out to somebody, find people on Facebook, find people on Instagram, find anyone that's on this panel right now. We will be able to find a way to help you. Don't give up, even if you don't have access to medical care or something like that. There is a huge community standing behind you willing to support you. And so, Kylie, what about you? Any piece of advice? I'm sure you'll want to echo all of the wonderful things that were said.
Kylie Gomez:
Yeah, definitely. I mean, everything you guys have said obviously. The only thing I would probably add is your doctor or parent or boyfriend or manager's ego and uncomfortability is never more important than your health. I think that it's really hard because it's such an uncomfortable taboo situation that we have, so I think that there's a lot of times where we feel like we're not getting through to other people or people aren't understanding us. I think that you're getting through more than you think and they need to get more comfortable with uncomfortable conversations.
Melissa:
Absolutely. Thank you all so much. This has been an incredible chat. I really appreciate all of the work that you all do. Thank you for helping the endo community, it honestly means so much to me struggling through this for so many years myself, so thank you again and I appreciate you chatting.
Kylie Gomez:
Thank you, all. You are all awesome.
Melissa:
Thank you all so much. That was a wonderful chat.
