Global Patient Symposium
Together for Tomorrow
March 18-19, 2023 - Einhorn Auditorium, Lenox Hill Hospital, NYC
Okay. So how to advocate for yourself. I thought about this a lot. I worked on this presentation for a while, and last night at one 30 in the morning, after talking to some Endo friends, I decided to pivot and make this a little bit more of a breakout for all of us. So, are you all ready to be a little uncomfortable with me this morning? Okay, good. How does this clicker work?
Big Green. Green. Big one. Big one. Okay, so here I am at Patient Day in 2019, but the first time I came here in 2018, I didn't know anyone. I live in Michigan. I flew here and I was like, I just, after five surgeries and struggling with endometriosis for so many years, I was like, I just need more information. I saw an Instagram, I'm like, endo found, who's this? And they're doing this patient day. I need to go. So I got on a plane, came to New York in 2018, sat in a chair back there, didn't talk to anybody. I'm an introvert. I was like, I, I don't know anyone here, but I wanna learn. And so I took a bunch of notes, didn't meet anyone all day. Came back in 2019 and I spoke on stage. So I met so many people at Patient day in 2019 that I was like, everyone in this room needs to meet somebody else that they don't know.
Because those people have become the reason why I'm an advocate. They've made me a stronger person. So we are gonna break out, and everyone's gonna find someone they don't know. And you're gonna talk about your endo, tell each other your endo story and connect. We're gonna have five minutes to do that. And then I want you as a team to tell me how you've learned to advocate for yourself. And we're gonna walk around the room instead of me lecturing you for 10 minutes. What do you guys think? Are you into it? Are you nervous? Okay. My yoga teacher does this all the time, and she makes me introduce myself to the person next to me. And I'm, I'm an introvert, so this is hard for me, but I will come help. So raise your hand if you're a patient. Okay? Find a patient you don't know. It's gonna be crazy. I know. Look around, find a patient you don't know. Go sit with each other for five minutes and introduce yourself and give a snippet of your story. Go get out there. Patience. Come on. Who, who needs a partner? I'm coming down. I'll be someone's partner. Who wants to be my partner?
Who needs a partner? Partners. Good, good.
Our, our support systems. You can be okay. So excited.
I love this.
You better than talking. I
Mean, I feel like they're both fantastic, but this is also very fun. What? It's,
This is my, hello?
Three more minutes. Three more minutes. Get ready for your advocacy. One more minute. All right. Who's ready to share? Anyone ready to share? They're having such good conversations. Anyone ready to share something that they did to advocate for themselves? Anyone wanna share outta your group? I'm coming over. I'm just getting out here in the crowd.
Hello. Um, I'm Adrian with my group, Adriana and Sam. Um, I think what we learned kind of like, like is that we advo we learned how to advocate more so from our parents, our mothers, um, they kind of were the ones that pushed us and let us in the way that, you know, we weren't really familiar, aware of. But also, we also kind of learned kind of to trust ourselves and not really trust doctors fully and completely cuz they may not know. And to learn when to push back when you know, things don't feel right. So I may not have learned it in this whole process, but towards the end now, going forward I know what to do and what's best for myself and that I can't just complicitly just put all my faith into just the doctors.
Thank you. Do
You guys wanna add anything? You
Got it. Such a good point. One thing, like knowing endo and researching Endo yourself, you have to be an expert, right? Like, you have to know everything about it. So you can go in and advocate and fight for yourself. Anyone else wanna share what in their group of how they learn to advocate?
<laugh>. Hi. That was very loud. Um, and like we, cuz we didn't really get to it, did we? We just talked about our, our ourselves, but at the end I kind of looked at you and our, our thing was just don't stop. You just cannot stop. You just have to, you can take a break. It's good to take a break from endo. I take endo breaks, but um, you know, do not stop and be just really true to yourself. Um, that was it really.
Anyone else wanna share something that they, how you've advocated for yourself? I'll share,
Uh, like, like she just said, we kind of didn't talk about that <laugh>, but one way that I did advocate for myself is I f I found that sometimes, um, when you see doctors, and this is no slight to any doctor in the room, but they are focused on the one issue they're focused on. And there has been times when I've had, when I've had to say, can you stop and listen to me? Can you hear what I'm saying? This is what I'm feeling. Yes. I called you last week and said, I'm in pain. I am calling you again because I am in pain again. So I just not being afraid to speak up for yourself and not taking your pain for granted, your pain is there to speak to you. It's a gift. So just listen to that.
That's a really good point. I'm coming.
Hi everybody. It's so interesting that we all have such similar stories. It's just, it blows my mind every time I talk to someone. Um, we didn't really discuss this, but I think part of advocating is also raising awareness. I know that through just posting on social media my journey, I have connected with multiple friends or even colleagues or friends or friends who've been like, this is really what I'm feeling. Who did you talk to? How did you research? So part of that advocating is sharing how you advocated for yourself so others can do the same. Um, I feel like there's a lot more awareness now than when I was in my early teens, and I just hope that it continues to spread with this incredible community.
Hey everyone, I'm Anne. Um, I have a question. How many of you have a hair stylist? Do you really like, I I have a point. I probably promise <laugh>. Okay. All right. So my role with a hair stylist is that I use the same hair stylist until I get a bad haircut and then I find a new stylist because I've outgrown that stylist. I've done this throughout my entire life and I've decided to do that with doctors. If I have a bad appointment with the doctor, I fire that doctor and I get a new doctor. I have done this multiple, multiple times. <laugh>, <laugh>, <laugh>, you're not fired yet. <laugh> <laugh>. But I've done this with doctors who I felt like weren't listening to me or weren't listening to my pain. And if and if I can't get through to you in, in an appointment and you're not gonna listen, then I will find a new provider. I will not feel bad about it. And also both of us found Dr. I'm, I'm sorry, I'm gonna say your name wrong. Doctor, section se Seth. Say that to me. The doctor over there. <laugh>, that guy <laugh>, I had to find him online. I actually went through a gynecologist, a pain specialist, and my pelvic floor occupational therapist was the one who told me that she thought I had endometriosis. I googled endometriosis doctor. Boom, here I am. But I like, isn't it crazy that I had to Google that? Yes. Did everyone else had to Google this? Yeah,
Oh my gosh. Well, I can't wait to hear all of your stories and talk to you about hairstylists. Okay. <laugh>,
That was awesome. Thank you. I'm coming. I'm coming. Oh my gosh, this is so great. How much time do we have?
Her doctor Googled endometriosis.
<laugh> in front of you? Yes, he got fired. Oh my goodness. We had one over here. Kim coming. Hi.
Hi. Hi everyone. How are you? My name is Amanda and my wife here is Alyssa. She is, yeah. Woo. She is, um, a patient of Dr. SK and Dr. Chu. We're groupies for Dr. Chu <laugh>, um, <laugh>.
Um, so as the partner, um, I have someone who suffers with endometriosis for, uh, we've been together for about 13 years, so as long as I've known her. Um, so just wanted to, first and foremost, everyone in this room that's struggling with endometriosis, you are badass, you are a true warrior. Um, because I've seen it firsthand. Um, I know my own experience as a woman and, um, to see, you know, your partner struggling is, is really, um, I think important as a partner, um, to advocate for her. Um, so I would encourage you, you know, in your own lives, if you have partners, friends, parents, whoever it is that is your support person, I think it's really important to have them in your corner. Um, even just a maybe a week or two before her surgery, um, in December we were in the emergency department and a doctor came in. She was in excruciating pain. And I know a lot of you probably have had moments like this. Um, and you know, in that state, it's hard to think clearly. Um, I work in healthcare and, you know, as a partner to step in and say, this is what's happening. We have this scheduled, she has stage four, boom, boom, boom, boom. Um, I think just having that person around you that's educated and, and can speak for you when you're unable to, uh, is really powerful. So thank you. Thank you guys.
Thank you for being that support person. I'm really lucky that I'm married to an incredible Anyone else though, before I go back up here? Oh, incredible man. Who's supported me.
Hi everyone. I'm Ashley. I just have one really quick thing to say. If you're in this room and if you have had the pleasure of being treated by Dr. Sukin, and if you want other people to continue to get his name when they search endometriosis on Google, just write a Google review and that helps bring him to the top
So much Google Talk. Did they sponsor this talk? Okay. I know I only have like a minute, so I just wanna fly through these slides. We've already talked about a lot of this stuff. I just wanna touch in case we missed anything, so I won't read through them all. I built this support system here at Patient Day. Like I said, you all changed my life. I felt, I came here after five surgeries and I felt like in Michigan I led support groups there and I was the person who was supporting everyone. But when I came to patient day here and met people in New York who were as sick as I was, I was very sick, very bad endometriosis, they helped me. And they're sitting here right now and we can text each other one word and be like, I can't do it. And, and they get it.
So it's really hard to get that from a friend. So having a right support network, a partner that understands is they're advocating and fighting for you is incredible to have. So that's just such a big part of advocacy. Chatboards there's support groups online. This is a, just a great start being here. Um, we talked about advocating with medical professionals. So come in armed is what I always tell people. Be clear and assertive about your symptoms. I would always be like, it's not that bad. When I was like laying on the floor at work, rocking back and forth, my coworkers are like, what is wrong with this person? Oh, I'm fine. I just have cramps. Like, no, go in and say I can't walk. Like I can't walk around the block. I'm 23 years old, why can't I walk around the block? So go in, be clear, be assertive.
Describe how it's impacting your life. I missed my high school graduation, I missed this family event. Be really detailed. You have to come in armed. And I always tell people I keep this little mole skin notebook next to my bed and I just track my symptoms. You, and, and then go in and here you go. Like, I'm sick. So know your treatment options. Go in educated, go unarmed. Know what you want treatment wise too. You know, if someone's offering you something you don't want, you can say no, they're not in charge of you. You're in charge of your body. So, um, come in prepared. Like I said, I just wanna fly through these really quick workplace. If you were here yesterday and the, you taught the lawyers that were here that did the talk about your rights and knowing your rights, I thought that that was really a great talk.
I know it was free New York State, like I said, I live in Michigan. It's totally different. But do the research. Know your rights, ask your work for accommodations. I had a heating pad at work. I asked to work from home when I was really sick. Those are things that you can ask for and fight for. You may not want to tell your employer that you have endometriosis. And I have a great example. I used to work at a retailer and I told them I had back surgery. Like I didn't even tell them the truth in the beginning. And then as I started to advocate more at, in 2017, I started just telling everyone, I have this disease, endometriosis. So it's up to you what you wanna tell them, but you can tell them that you have a chronic condition and then taking care of yourself.
That's so important. I feel like most of the endo warriors I meet are the most incredible, hardworking people and we have a really hard time taking care of ourselves. And maybe part of that is guilt or shame because we're in pain all the time or we feel like we're burdened on these other people in our lives. But taking care of yourself so then you can give back and be good for yourself. Like every Sunday to take an epon salt bath. Like I just do it. Like, and it's, it's a me thing. If you need to take a break, you need to take a break from appointments, you can do that. So remember yourself, be compassionate to yourself. That's something that's so important that I am very historically bad at high achiever and just give myself a really hard time. So I hope that this was helpful. I really wanted us to have some engagement. I hope that was fun this morning. Thank you for listening. Thank you for being here. And if you wanna check out my podcast, I have to do a little self-promotion here. I just interview people about their stories and try to talk with people in the community. Thank you so much for listening. Thank you for being here. I appreciate it.