Episode 14: How to Support Someone with Endometriosis

Endometriosis doesn't just affect the person living with it — it also impacts the people who love and support them. But knowing how to help isn't always easy.

In this episode of The Endo Edit, Katie and Ragan share practical ways partners, parents, siblings, friends, and caregivers can better support someone navigating endometriosis. From listening without trying to "fix" the problem to offering grace when plans change, they discuss the small actions that can make a meaningful difference.

Whether you're living with endometriosis or sharing this episode with someone you love, this conversation is designed to strengthen relationships and help build a better support system — because no one should have to navigate endometriosis alone.

💛 New! Join The Endo Edit Community Chat on Instagram for episode discussions, encouragement, educational resources, and a supportive community that truly understands the endometriosis journey. We can't wait to connect with you there!

#endometroisis #womendiagnosisstories #endometriosisawareness #womenshealthpodcast #womenshealthstories #womenswellnessstories #endometriosispodcast #endometriosiscommunity #endometriosiswarrior #EndoWarrior #TheEndoEdit #endocommunity #endometriosissupport 

Transcript

SPEAKER_00 0:00

You're listening to The Endo Edit, where real stories about women's health and lived experiences immediately. I'm Katie Turner, an Endo Warrior over ten years in the making, a believer in clean living, and proof that your diagnosis doesn't define you.

SPEAKER_01 0:14

And I'm Regan Hubbard, a registered nurse, holistic health coach, and fellow endo warrior.

SPEAKER_00 0:19

If you've ever felt dismissed or unseen, you're not alone.

SPEAKER_01 0:22

This is where we talk about what's been silenced. Welcome to the Endo Edit. Welcome back to the EndoEdit. Today we're gonna dive into what it looks like to be a family member or a friend of someone with endometriosis and the best way to encourage and help and just be there for them. We know that endo is very confusing and it's very hard to see. Um so we just wanted to kind of have an episode dedicated to the people around us and around those with endometriosis to give them some support. Um, because we know that it can sometimes feel like uh like a lot. So we just want to, yeah, provide support for the entire community. So, Katie, I'll let you take it away with the first view. What do you think really helps support you as far as like what your family and and friends do?

SPEAKER_00 1:12

I think the biggest thing is when they just listen to me and don't try to dismiss whatever I'm saying that I'm like feeling or experiencing. I think like the toughest thing about endo is that it is an invisible disease. So it's like, you know, when I was like in the throes of endo before I even knew I had endo and going through the whole diagnosis process. I think there were times where I started to get questioned on the validity of what I was feeling and like, you know, maybe take a walk, get out of the house, try to think about something else when it's like, no, like I need you just listen to me and take what I'm telling you seriously and not try to write it off as like it's nothing.

SPEAKER_01 2:01

Yeah, yeah. I agree a hundred percent.

SPEAKER_00 2:03

Like if I like broke out into a rash every time I wasn't feeling good, I wouldn't be dismissed. You know, they'd be like, oh, I can see it. Like I can see that you're going through something and you're in pain and you're having a flare where it's like I might just be bloated, you know, when I'm in like immense pain and no one can see it or like put like a visualization to what I'm trying to tell them. Cause I think it can be like you've gone so long not feeling good. Like, how much longer can you really go without feeling good? Like, come on, you know, when it's like I don't know. Yeah I'm still figuring it out.

SPEAKER_01 2:36

I know, yeah. I think this is where a diagnosis can be so helpful. Like, don't don't let your diagnosis define you. But I do think when you have a diagnosis with something like this, it makes it a lot easier for like the people around you, because you can name it. You can be like, I'm having an endo flare right now. And they can, even though they don't see it and they don't understand necessarily, they can be like, okay, I know it's invisible, I know it's painful, and then you know, go about however they would help from there. But I think the at least for me before I got diagnosed with endo, it was hard for me to name. I would just say I'm having a bad day because I didn't know, you know, like I was in pain so much that I'm like, maybe this is just how everyone feels. I don't know. And I'm just having a moment or whatever. So it was all it was harder back then to be like, hey, I need support. Cause I'm like, I almost to myself would be like, you're fine, even though I wasn't. Whereas now it's like This is my new normal. Yeah. Like this is just how I think everyone lives. Maybe I don't maybe I'm just being a baby. I don't know.

SPEAKER_00 3:38

Yeah.

SPEAKER_01 3:39

That's at least where my brain went. Whereas now it's like I'm having a bad endo day, and my mom or my husband or whoever knows, like, okay, she's in pain, she needs to rest, or whatever it is. Yeah. I a friend recently asked me, like, what's the best way to support you? I was having like a bad day. I don't remember what was going on. I was having a bad endo day. I was just in pain, and she was like, How can I support you in this? And I it was honestly a really hard question to answer. I was like, you know, I don't really know. And so I did some like reflection, and I think the biggest thing for me when it comes to how family and friends can support me, which it sounds horrible, and I don't know how I'll say it, but let me be flaky. Let me cancel last minute and don't take it personally. Because 10 times out of 10, I can promise you it's not personal. It's my body. Like it's like I can't show up, or or if I do show up, kind of let me show up and not talk, or you know, just like kind of let me be there as a fly in the wall. Yeah. I think the other hard part about Indo is there are days where I feel really good and I can be very social and I can do a lot of things. But then literally the next day I could wake up and like feel horrible. And I, at least at this point in my journey, I can't figure out when those days are gonna happen yet. So I was just explaining that to my friend, even my husband, I was telling this too. That's one of the most frustrating parts about Indo, is I can have a great day and be like, I'm doing so many things and I'm working out, and I'm you know, I feel like a normal person. And the next day with no notice, I am down bad, and I have to cancel all the plans that I made. And then I feel really bad about that. So Yeah.

SPEAKER_00 5:15

Cause it's like it's nothing against you. Like, I do want to see you. I do want to hang out with you. It's not that I woke up and was like, I just want to do this today. It's like I woke up and it's like I physically can't, and I can try to make it work, but like it's not gonna be an enjoyable time for anybody. Like, because I'm gonna be in pain and quiet and kind of shut down. So can we brain check?

SPEAKER_01 5:35

Yeah, yeah, yep. And that's sweet friends, she's awesome. She was like, she took that to heart, and and that's kind of what I've told people that was months ago, and now I'm like, okay, that is the thing that I need. And it's actually been really helpful too for my husband, at least I hope so. Where yeah, like he sees the ebbs and flows more than anyone else. And so I think it's been helpful for him to like kind of you said, like, he just believes me. When I'm like, hey, I'm having a bad day, or like I physically cannot stand and cook dinner right now, like I need to lay down for a second. He's like, okay, like I understand it. So yeah, I think endo is so hard. We can't really do much outside of just encouragement and prayer.

SPEAKER_00 6:15

Because most of the time I'm like, I don't know how you can support me when I don't even know how to support myself right now. Like it can be difficult for sure. Yeah. And like once I started feeling better in my endo and was like having more good days than bad days, and I was figuring things out and I had a routine, like, I kind of found myself falling into the pattern of like making all of these plans while I was in like my follicular phase, and like, oh, I'm feeling really energetic and social and I'm not bloated, I'm like not on my period. So that's when I'm like reaching out to all my friends. Like, you want to do something next weekend? And then when the time comes to have those plans, like I'm about to start my period, or I just started my period, and I'm like, sorry, I'm not, I can't do this anymore. So I'm like, I recognize that because I I hate being the person, like I hate last minute flakers if I'm like, whether it's me or someone else, yeah. I'm like, okay, that's so annoying. That's like the 10th time you've done that. But then it's like, you know, I've like fallen into the trap myself of like no ill intents whatsoever. Like, I really did want to hang out with you when I made these plans. I'm just now that the plan has come, I just physically cannot like do that right now. And I would rather save it for a time when like I we can all enjoy it. Yeah, yeah.

SPEAKER_01 7:31

Something that was like pretty helpful for me is I kind of shifted the plans, at least to the best of my ability. Like, you know, if it was plans to go out to dinner or whatever, then hey, why don't you come over for a movie night? And I can sit with my heating pad and yeah, and that's been really helpful. The other part of this too, though, is which is can be kind of hard for some people, is like being open that you have endometriosis, which is kind of like a weird conversation when you're making friends. It's different if you have a long-term friend and it's like they know you, they know you have endo. For sure. But I've honestly just had to kind of suck it up and get more comfortable with being like, oh, I have endometriosis, I'm I'm in a flare, uh, or whatever, whatever it is, like I'm about to start my period and I feel terrible. And like, you know, just being open about that. And I feel like I've just reached this point where, you know, if they're meant to be in my life, then they'll be okay with that. And if they're not, that's totally fine. But I'm not gonna stress about hiding, hiding this chronic illness that I have. Yeah. With also the boundary of I'm not gonna make this my identity, you know. I'm like, yeah, it doesn't describe it doesn't describe me, it doesn't define me, but I'm gonna let you know that I'm gonna cancel because I have endo and having a flair, not because of you or because I don't want to hang out with you. So I think that's an aspect that can be a little bit hard if you are more of a private person.

SPEAKER_00 8:45

Like, cause I was like my whole high school experience was navigating endo and getting a diagnosis and like the worst pain, the worst, you know, over the last 10 years, those were the worst four years of my life.

SPEAKER_01 8:58

Yeah.

SPEAKER_00 8:59

So it's so different talking to my girlfriends that I was in high school with that literally lived it with me every day. Because I'm showing up to school every single day. They've seen like all of the changes that I went through from like going every single weekend to slumber parties and doing all the things to like my senior year, I hardly left my house. Yeah. So like it if I were to like cancel on them because I'm in pain, they would be like, no questions asked because they've seen me like at the lowest point of my indo journey, as opposed to like adult friends who I've like now navigated it and they're used to me having more good days than bad days. So when I am having a bad day, I think it's harder for them to be like wrap their minds around like Katie does such a good job at like hiding it or like whatever, because there is like it's not like you don't just meet someone be like, Hi, my name's Katie, I have endometriosis. Yeah, what do you have? What's your biggest fault?

SPEAKER_01 9:58

What do you have? Oh, I'm dead. That's yes, 100%. Like it's and I feel like when you meet people as an adult, it just gets more and more awkward, and you kind of just have to be like, Yeah, once you're making plans, you gotta just rip the band-aid off, you know, with the first time. Just like, hey, I've got a chronic illness. Let me be let me be a little bit flaky. And then like we have the responsibility of like genuinely when we're not feeling well, that's the only times that we cancel to the best of our ability, kind of yeah, yeah.

SPEAKER_00 10:28

And I am someone who is type a planner. I love to have a plan. I love to like plan things in advance and know like hour by hour what is our weekend gonna look like. But there's definitely like if I'm if I know I'm about to start my period or gonna be on my period, and like my husband's trying to make plans with friends, I'm like, just hold, please. Yeah, like it's gonna be a day of decision that will reach out and see if anyone wants to hang out. Like, I can't because I hate flaking. Like most of the time I will try to make it and be there, but then I'm sitting there accidentally with like a resting bitch face because I'm in pain, you know? Yep. And it's to it's to the point where I know that about myself. And I'm like, I don't I don't want to meet your coworkers for the first time when I'm starting my period. Like, I'm not gonna make a good first impression. They're gonna think that I'm just this like isolated biatch when I like to think that I'm a pretty nice social person, but not when I'm about to start my period or having like a terrible moment of pain.

SPEAKER_01 11:28

Yeah. I actually have a kind of a funny story about that. Back when we were early figuring out the best way for my husband to support me through this journey, and like I didn't even really know what I needed or wanted. But I remember we were we were with a group of friends, and I was about to start my period, and I was in literally the worst pain. Like it was so bad. I was having a terrible endo period. And I had told my husband, like, hey, I'm about to start my period, I'm in pain. And it was it was just not good. I wasn't mean or anything, but I just like didn't speak and had resting, you know, resting or what is it? RBF? Yeah, RBF, thank you. Why not to curse? Yeah, and then afterwards, my husband was like, What like what is wrong with you? Why were you not engaging? And I was like, I I didn't even notice. I genuinely that was my best effort. Could not, all I could think about was breathing through the pain and trying to focus on whatever they were saying, but most of it I couldn't even process because I was just in the pain. And it was one of those situations where we couldn't cancel, you know. So part part of what I did too was I kind of did remove myself a little bit, not completely, but I just like kind of stopped talking because I wanted him to enjoy his time without having to like focus on me. And so I thought I was helping the situation, and then it didn't really. So all I have to say is like this is messy and it's really hard to navigate sometimes. And you have to stumble through it until you find what is helpful and what's not, and then just be transparent and open about hey, this is what's helpful, this isn't helpful. We've come a long way since then. But but I remember having a conversation with him, and he was like, Wow, I didn't I didn't understand that you were like actually in a ton of pain. Yeah. And I was like, Yeah, I'm always yeah, like I don't know. It's hard to explain. It's hard to explain that. Because I tend to be like, oh, it's like I'm in pain, but it's fine, it's fine. And then we just you know, but you kind of have to stop yourself and be like, I'm in pain, it's not fine, and I will do my best.

SPEAKER_00 13:18

Yeah. And yeah, right, for sure. And there's, I mean, similar experience of like, I think that I'm like actively involved in whatever the setting is because like I'm there. I might not be talking, like contributing to the conversation, but it could just come off as I'm just listening, you know? Like I'm not trying to look like I'm like uninterested in just sitting there. But like it was like it took my mom and several of my very close friends kind of like calling me out in situations of like, like not like rudely, like quietly and being like, you don't feel good, do you? And I'm like lovingly, yeah, you know. And they're like, You just shut down. And it's like sometimes you're not aware of it, you know? Cause like you think you're like, Oh, I'm good at putting on this front and they'll never know. But it's like people who really know you, they can totally tell, like, when that switch is just like, oh, Katie isn't not feeling good today, like she is quiet and for sure, like just a different person.

SPEAKER_01 14:11

Yeah. And it's it's almost kind of sweet when people that you love can recognize it. You know, when my friends or family are like, Are you okay? I'm like, You see me, I can kind of relax a little bit more. Cause I think there is it almost makes the pain worse when you're trying to hide because you're just I'm gonna be tense and no one's gonna be able to see it, and I'm gonna push through, and that just makes it so much worse.

SPEAKER_00 14:35

Yes. I feel like once someone like verbally recognizes that I'm not feeling good, I'm like, thank god, I can like actually look miserable now. I wasn't fooling anyone, so now I'm just gonna go full on like I'm in misery, but I'm here. Or like your feelings won't get hurt because I'm gonna like just go home now. Like, I'm gonna leave early.

SPEAKER_01 14:56

I'm gonna go.

SPEAKER_00 14:57

Now that we're all aware that I'm not acting like myself, I think I'm just gonna excuse myself. Like I tried.

SPEAKER_01 15:02

Yeah. I do feel a lot for family members and friends with I mean, with any chronic illness across the board, we just have direct direct experience with endometriosis. But it is really hard. I mean, and I remember being not for you. I didn't know I had endometriosis and you were walking through it, and we were roommates. And I remember being like, I don't understand, and I don't know how to help. Yeah. So I yeah, being on both sides, it's hard. It is really hard. I think another big one that can be very frustrating is don't try to think about the word this like, don't, don't tell us what to do. Don't don't tell us what to do.

SPEAKER_00 15:34

Act like you know what's best for us.

SPEAKER_01 15:37

Because chances are we've tried. Like, I can almost promise I've done everything that you're about to suggest and I know what works and what doesn't. And I need you to just listen to what I need without you being like, well, maybe this would help better. Or maybe, like you said, like you should just not think about it, or you should just go for a long walk. And it's like, can you just let me do what I need and just listen and not tell me what to do? And like the most loving way possible. But yeah, just don't tell us what to do. That's pretty cool.

SPEAKER_00 16:06

It's like, please just trust that I know my body best.

SPEAKER_01 16:09

Yeah.

SPEAKER_00 16:09

So if I'm in a flair and I'm telling you I cannot eat anything, don't try to force like even a piece of toast down my throat. Like, that'll just make things worse. Like, thank you. I appreciate you trying to actively do something, but it's not working. Or like, go for a walk, get out of the house, like put a show on, like distract yourself. It's like that's great. That's not gonna like that's not what I need right now. Right. Yeah. I think that falls a lot. I love my husband. He's learned a lot over the years. Yeah. But I think like for boys, it's really hard because they don't even have a period. So they don't they already don't know what that is like, let alone put it on steroids with endometriosis and like your whole body just hurts. Yeah. And they just try to be like, let's go for a walk, let's do something. Like, this always helps me if I do this. It's like, that's great. You have no idea what I'm going through right now. So please just be quiet and sit on the couch with me and support me in having a lazy day until I'm like, I feel better. Yeah, yeah.

SPEAKER_01 17:13

And then let's go. I think that's a yo-yo. I feel so bad sometimes because I I do notice I do that to my husband too, where it's like a yo-yo of like, I'm having a bad day, so we're gonna do nothing. And then tomorrow we're gonna do everything.

SPEAKER_00 17:26

But yeah, it is like I can tell when my body just needs a break. I'm like, please just give me a day. Yeah. And then, like, I promise once I get good night's sleep and a restful day, I will be back to like almost my normal self tomorrow. Like, it's usually just like I just need a day to not and to just wallow in my pain and just like accept it and embrace it and welcome it and not try to do a bunch of things to like wish it away, you know. Like sometimes it is just like maybe my body's just telling me that we need a break.

SPEAKER_01 18:00

Yeah, yeah. And I feel like an endo body will tell you very fiercely when it needs to sit down. Yeah, I think boys have such a fix it mindset, which is wonderful, like they're made that way. But this is definitely a learning curve for them for sure. I don't know for you, but for me, at least offering is a little bit better. If you're like, hey, what do you think about going a walk? Okay, let me say yes or no. But I think when it seems like, oh, I know what you need and this will fix you, and let's do this. It's like, wait, let me tell you. Just ask, just be curious, just ask. And then that helps you feel heard, and you know, there's a whole plethora of how that's really helpful.

SPEAKER_00 18:37

But for sure. Cause there's definitely times where it's like we had fun plans with friends, and I wake up and it's a terrible day, and I cannot do that. And it's it's always kind of like trying to encourage me of like, okay, we'll have a slow morning and then you'll shower, you'll feel so much better. And then I feel like there's like this pressure on me that now, like, I have to feel better, so we're not canceling these plans. Cause it would be hard if you're not the person not feeling good and you've been looking forward to this and you're like, you're great and energized and ready for it. Yeah. Your partner or friend, roommate, whoever is like, I can't do that anymore. I could see you wanting to be like the encouraging of like, yes, you can. When it's like, no, I can't. So please stop telling me that I can because you're just making me feel worse. Yeah. Because like now I feel like I'm letting everyone down because I just don't feel good. And I had no control over this. Like, I didn't wake up and tell my body, like, oh, let's have a terrible day today and cancel all of our fun plans.

SPEAKER_01 19:35

Yeah.

SPEAKER_00 19:35

And you know, like, are there times where I'm like, please go without me? Like, maybe I'd rather just be alone. And or I know you've been looking forward to this, and I'm just gonna be on the couch all day anyway. So, like, you should go. Like, you still go, have your fun, do your thing, yeah, check in on me.

SPEAKER_01 19:50

Like, I have horrible FOMO. I need to grow in this way, and I know I do, but I have horrible FOMO. Usually when I'm making plans, I want to do those things. So I'm like, I want to do them. So just feel good so I can go. Yeah. I started giggling because I I just almost verbatim. I had this conversation recently over uh it's called a Via Ferrada. Do you know what those are? It's it's a European thing, but they it's this intense hike and it involves climbing and you have to hook in and climb up this mountain. Anyways, it's on my bucket list to do one. I really would love to do one. At this point in time, my body's I'm gonna go player for for all of our listeners, in case you didn't know. So I'm in this season where I'm not able to do a lot of the activities that I like to do, which include very intense hikes. So, anyways, my husband was trying to be so encouraging and was like, you can do it. I know you can do it. Let's just plan it and we'll go. And you'll you got it. And I got so frustrated because I I was like, no, I can't. And he's like, No, no, no, you can't. I know that he was being so sweet and so nice, and thought he was being really encouraging.

SPEAKER_00 20:56

Yeah.

SPEAKER_01 20:56

And I as soon as I reacted in frustration, he was like, Oh, okay. Can't take this. So hard because I'm like, I get that. That's confusing because genuinely, that is a good thing to encourage your partner. At times is really helpful and does work for me. Yeah. At that point in time, though, was not helpful. I was back starting a period too. So I was already feeling so defeated. And you know, you have those wallow moments where you're like, my body is falling apart. And so I was kind of in that headspace, anyways. And then he was like, No, you got it. And I was like, No, I I don't. I can't do these things. He is so sweet, he's so kind, and okay, now that that was weeks ago, and we're we actually are gonna do a Via Ferrado. We found one that's very easy. And I'm like, Okay, I got this. And he's like, Okay, now we're encouraging it. Yeah, now we're encouraging. It's really hard. And like he doesn't have anyone in his family that has this, so he doesn't have any examples. We're flying by our bootstraps right now, and we're figuring out together, which is great. It's creates really funny and sweet moments to look back on. Now I can laugh in that at that. But yeah, it I was just giggling because you said something like that. And I was like, oh yeah, I just had that issue.

SPEAKER_00 22:07

Like, please always be my biggest cheerleader. But if I'm saying I because of like an endo thing, trust I can't. Like, I do not, I need you to be a cheerleader in the sense of like, you're right, you can't, so we're gonna stay home. That's like, thank you. That's right. Yeah, I know, which is very important. I can probably benefit from having some FOMO. I really don't. I really don't. I have like Jomo, the joy of missing out. I'm like, ooh, this got me out of that. All right. Like we could, I'm like such a homebody these days. It's bad. Like, luckily, my husband is the complete opposite. Yeah. So like if I'm in it, yeah, he's like social energy bunny, like doesn't know a stranger. We go on dates and he's like always doing talking.

SPEAKER_01 22:52

He always makes a friend. Every time I'm with her husband and her, like he is making a friend elsewhere, and he brings them to our group, and it's the funniest thing. But so and so. Like, what? Yeah, yeah.

SPEAKER_00 23:09

Yeah, that's my husband. So yeah, my FOMO comes from like if I have to miss out on something, but like he still goes, and I'm like, don't even tell me about it. Like, I hope you have I hope you have a terrible time. That's so funny. I'm toxic. But you know, I know that about myself. And if I am skip if I'm missing out on something, it is because I truly just like cannot physically make it there. But I do get upset when I'm like, you should still go, and he does. And I'm like, how dare you? Why don't they go with me and wallow and self-pity together? Like the Grinch.

SPEAKER_01 23:44

Yeah. Well, it does get lonely. That's a part of it. It does like, yeah. That I think that's where a lot of my FOMO. I mean, I will say my husband's really good and about like if I'm not feeling good and we have to cancel plans, he's typically out with me. Also because he's exhausted from work anyways, but yeah.

SPEAKER_00 24:02

I think we I think my husband knows that I don't mind missing out on things unless he's going. So I think sometimes he'll test it and be like, is it cool if I still go? And then sometimes that has me thinking, like, okay, Peter really wants to go, knowing that I'm not gonna go. How bad is my pain right now? And can I really not go? Like, I think sometimes it's like, ugh, or like he will go, and then I'll like sit on the couch for an hour and be like, okay, well, this is worse. So then I'll get ready and like Uber to wherever he is. I'm like, you know what? I'm coming. Like, yeah. I almost feel like I'd rather just be with you, you know. Like I'd rather be wherever you are than sitting at home by myself, just like making things worse. So yeah.

SPEAKER_01 24:42

There are days where it's like the pain is too much that I literally can't go. But yeah, I I almost feel if it's borderline, the loneliness is worse. I don't want to sit at home all day by myself. And so I'm gonna like push through. Yeah.

SPEAKER_00 24:56

Right. I'm like, at least you know that I don't feel good. So like if I look at you and say we need to go home, you don't question it. Like you're like, all right, we tried, we gotta go.

SPEAKER_01 25:06

Yeah. That's another good point. Like, I will push through if it means that I'm gonna sit at home alone. And the people around me that know me very well know that. So then I think changing the plans can be a really good way to help support someone with indo so that they don't get left out, but they're also not because I don't think pushing through the pain is good either. That's just gonna make the next day worse. And so there is that fine line of push to a certain point point so you're not like just doing nothing, but don't push too far. So it's hard to figure that out. But I do think recently what we've been doing is just altering plans, and that has been really helpful. So it's just much more chill. We were supposed to go rock climbing, and I called him the night before, and I was like, I like I am not gonna be able to rock climb tomorrow. And we went to the beach instead. It was relaxing, but we still got outside and we still did something fun together. And so, yeah, I think that's a huge hack. Just because you're gonna not do the thing doesn't mean you have to sit at home by yourself. Even if your husband or spouse or boyfriend was doesn't want to go with you, ask a friend. Don't sit at home by yourself unless you want to. But for me, I don't like to be alone. If anyone doesn't know I hate to be alone, so it's it's rare. Unless I am in dying pain and I genuinely need to go to sleep, I don't like to sit at home by myself.

SPEAKER_00 26:19

No, I'm the same way. And that's how you know, like, if I am canceling something, like I thought long and hard about how bad is how bad is my pain and can I even make it for an hour? And I for sure take into consideration like how much does this mean for my husband if we do or do not go? Or if it's like a baby shower for a friend, it's like how how important is this for the other person if I show up or not? And I'll always try to go. But there are times where it's like, I can't even get in the shower today.

SPEAKER_01 26:52

Yep.

SPEAKER_00 26:52

I'm not leaving the house. Yeah.

SPEAKER_01 26:56

I agree.

SPEAKER_00 26:57

I think it is like the biggest thing in a so poor per in a support person is to find someone who will listen to you and be patient and show a lot of grace and and just be willing to be flexible. Yeah. Yeah. Because it is like we're not in charge of this. Like we're not trying to be mean in like changing things around or canceling things or you know, whatever. And that comes from a very type A person who I don't like when plans change, but it's like I realize that plans sometimes they just have to change. And like you have to be flexible and be like, I'm I'm doing the most that I can right now, and then find someone who is going to encourage you to advocate for yourself. Yeah. Yep. Like I think something different, like a difference in our journeys is that I was in high school when I was going through it. So I'm still on my parents' insurance and like not want I'm I mean, I'm like, you know, 16, 17, 18 years old. Like, I'm not standing up to doctors and advocating for myself. Like I'll probably be kind of quiet and minimize the pain. Yeah. And then like apologize to my mom. Like, I'm sorry, we just had to go through, like, go do all of that. I think I'm fine. Like, I felt bad. Yeah. Tried to like minimize what I was feeling and going through because I didn't want to like put my parents through that and pay for the doctor's appointments, and my mom is driving me around to all these different specialists, and I'm missing school and like all these things. I feel like a burden. But like my parents were never like, okay, this is enough. We need to take a break. Are you really not feeling good? Or are you just trying to get out of school? Like, they were never like that. Like, my parents always listened to me and they were always advocating for me when I wouldn't do it myself. So I'm like so grateful for that. Yeah. Whereas, like, you're going through it as a grown independent adult, married on your own insurance, and you're kind of like, okay, screw you for not listening. I'm gonna go find someone else. You know, whereas like I leaned on my parents a lot to do that for me. Whereas if I was going through it right now, I would be like, You're not listening to me, I'm gonna find someone who will.

SPEAKER_01 29:04

Yeah, that is actually a really good point to make because I I feel like probably a lot of our listeners are older. I would assume, probably a lot of high school. Yeah, probably on their own insurance. And that is, yeah, that's an aspect that I didn't really think about because it is true. Right now, I'm walking through trying to find someone to listen to me. Which you know is really interesting. I had this thought earlier today. This is kind of my first, my first time doing this in the sense of like my first surgery was no questions asked, emergent surgery. Like I didn't have to fight for it. This time around, yeah, I'm having to do the fighting. And this is this is horrible. And it it does make you feel crazy. Like there have been times where I'm like, is it this bad? Is it this bad? And then I have a bad day, and I'm like, yeah, it is. It is. I have to continually remind myself that the pain's really bad again. And all that to say is advocating for yourself as an adult is so hard, and it takes so much mental energy and time. The amount of doctor's appointments I'm going to right now is insane. Just so I can find a specialist that my insurance will take that will listen to me and that will not tell me that nothing is wrong. And take Katie knows this. I've had so many tests done in the past since March, is when all this has been going on, and everything has been coming back normal and normal. As they do with Indome. And you know, all the doctors are like, You're okay. But I'm not. But I understand that the labs and everything look normal, but I can promise you it is a night and day difference from last year, which even last year I was would have flares, but it was never as bad as how it has been since March. And so if I did not have the encouragement from my husband and from my parents and my friends and other family members who just know what I'm walking through, I would have given up a hundred percent.

SPEAKER_00 30:51

Yeah. I mean, if the people that you love and look up to are dismissing you, you're gonna dismiss yourself too and just live in it.

SPEAKER_01 30:59

Yeah, you're like gaslight yourself. And and I will I almost have to have the people around me to be like, you're one of these people where it's like I'll I'll call text you or call you or whatever, and you know everything that's been going on. So I re-perfect example was this week I had a test come back negative, and that was supposed to be the test to see if I was gonna have surgery or not with a specific doctor, and it's normal. And I texted Katie and I was, I don't like, I don't know what to do. And you were so encouraging. Keep advocating, go to a second opinion, go to a specialist, find someone to listen to you, just keep trying. And you know, I didn't have to do that before, and now I'm doing it as an adult, and it is so discouraging. So if anyone out there is in this process of advocating for yourself and everything is normal, and you know that it's not normal, keep going, keep going. Text me, call me, DM me on Instagram. I will be your supporter and help you advocate.

SPEAKER_00 31:52

And you are not crazy, and there is nothing wrong with you if you get upset because you got good news. Yeah. The amount of times that I finally got like bad news and something was off and they found something, I like burst into a smile. I was like, Yes! There's something wrong with me. You can see it, you can finally see what I'm feeling. Yeah, as opposed to be like, well, your labs look great. Like, I would probably cry and be like, Why? Why do they look great? Like, some they're not great. Something is not right.

SPEAKER_01 32:25

Yeah.

SPEAKER_00 32:26

So, like, you're not crazy for being upset for looking like a perfectly healthy human on the outside and in your labs and scans and stuff, because you are the only person living in your body and like you know when something is wrong. And I know Reagan for I mean, 10 years now. Okay. Crazy. And I can tell you when she's not acting like herself. Yeah. And that's why it's like you need to find people who know you and can notice that change in you to help you advocate for yourself to be like, no, you're right, something is wrong. Like you are not acting like yourself, or this hasn't always been an issue for you, or if it was, it's never lasted this long, or new things are popping up and it's getting worse, or whatever. Like, you definitely because you can get to a point of having done all the things and exhausted the options and the tests, and everything's still coming back normal, but you still don't feel good. And then you start to be like, maybe I am just a hypochondriac. Like maybe I need I've had those thoughts. Yeah.

SPEAKER_01 33:26

Yeah, I'll have a good day and I'll be like, okay, maybe this is in my head. I don't know. And then I will have a very bad day. You know, I've always known that the only way to die definitively see, I mean, I'm already diagnosed, but like definitively see and remove endo is through surgery. And it's like I never ever thought I'd be wishing that I would get an approval for a surgery, but please, please open me up and look and take it out. Or, you know, it could be scar tissue, it could be a number of things that come with endo, even if it isn't a ton of lesions or could be adenomyosis, like it could have been could be a number of things, and I'm like, something is not right, and I know that. Please open me up. I never ever thought in my life I would want a surgery. I just want to get my life back together. So yeah, I hope that's encouraging to people listening who are in the throes of that. Like, you're not alone. I'm also an RN. I have had my fair share of working for difficult doctors who don't listen to their patients and like built a backbone for that in my own career, and I still struggle with advocating for myself and I need encouragement.

SPEAKER_00 34:33

Yeah.

SPEAKER_01 34:34

Yeah, you're not alone and keep going. Do not give up. And and eventually there will be someone.

SPEAKER_00 34:39

Absolutely. And if you feel like you just don't have anyone in your corner, anyone in your life who is going to be like a good listener and someone who's just gonna be patient with you and adapt with you and encourage you to continue seeking help. Like Reagan said, please message us. Like we can be pen pals. We'll always encourage you to advocate for yourself. Yeah. So you can at least like everyone deserves to have somebody in their corner that is going to encourage them to just keep fighting for answers because it can get defeating. Yeah. And you start feeling lonely and you start questioning yourself of like, am I really experiencing this or not? So sometimes it does help to just talk to somebody who is gonna listen and try to understand. I mean, me and Reagan are great, great listeners and great people to be like, oh, I've been there. I totally get that. Like, yes, keep going. There's something wrong, you know. Like, you just gotta find people who will be that support. It doesn't have to be a group, just find one person. Like, I know I can always go to Reagan when I am like having a bad day and we share a doctor, and like it's always just like sometimes you just need to talk, talk to someone who gets it. And that's not usually my husband because he's not a girl. He I talked to him about everything, but if I need just a little bit more, I'm going to Reagan. Agreed, yeah. Yeah. And I think just having one person can make a huge difference in your journey of just getting answers and fighting for yourself and knowing that there's always gonna be someone in your corner that's like encouraging you to keep going and seeking out answers, and someone who is going to tell you that it's not in your head and like believe that there is something wrong. And I mean, I'm Googling and Chad GPTing stuff when Reagan's telling me stuff. I'm like, okay, what is the combination of this, this, this, this, this. And I'm like sending her paragraphs. I'm like, here's what I found, you know. Like, you you just need someone who's gonna like ride the waves with you and like kind of wanna get you better as much as you want to get better.

SPEAKER_01 36:40

Yeah, absolutely. Yeah. It can feel very overwhelming as the person walking through it. And, you know, I fully believe in community and like leaning on your community. Um, because you're not meant to do it all, and you're not meant to do it alone.

SPEAKER_00 36:52

No. So and on that note, we did just create a community group chat on our Instagram at the endo edit. So you don't even have to just DM me and Reagan. You can DM the whole community of Endo warriors, and we just wanted to create a space where people who don't have a support person or they feel alone, or people around them just don't get it, and you're feeling lonely and isolated, or maybe you have a great support person, but they don't have endo, you know? Like, I think there is so much power in a community of women fighting the same disease, yeah, coming together and like just talk about life, talk about what you're going through, talk about your flair, see if anyone else has experienced it or gone through it, is on the other side of it, what helped them, connect with other women that are in the same area that have great doctors they can like, you know, refer you to. So join the group chat. It's just it's an open invite community group on our Instagram. So we'll keep sharing the link on our stories and stuff so that you guys can join it. And I think that'll be a great resource for everyone to just a great starting point of at least just you're not feeling alone anymore. Like there is a community of women going through very similar things. Yeah, I agree. Yeah.

SPEAKER_01 38:10

Join our community. So if this episode resonated with you and you have endometriosis and you want your friends and family to listen to this, send this episode to them. Or if you are a sport person for someone with endo, I hope that this was really encouraging and gave you some good tips. And if you guys have any tips and ideas for what helps you, feel free to share within our community so that we can have a plethora of options and tips and tricks for our family and friends. Yeah, thank you for listening and tune in in the next few weeks for the next episode. See you next time. Thanks for joining us for another conversation on the endoedit.

SPEAKER_00 38:44

If this episode resonated with you, share it with a friend, a sister, or anyone who needs to hear they're not alone.

SPEAKER_01 38:51

You can find more resources, stories, and community at theendoedit.com or on Instagram at theendoedit.

SPEAKER_00 38:58

We'll see you next time, and until then, take care of yourself.