Transcript

 

Lauren: All right guys, thank you so much for joining us. We have a very special guest today to open up the New Year 2020, our one-year anniversary! We have with us Lara Parker. For those of you who don't know, Lara lives with endometriosis. She is also a chronic illness advocate. You might recognize her from BuzzFeed, from Hulu. She had a show with Kelsey Darragh called Can We Cure. She also lives with associated pelvic floor conditions to endometriosis. So Lara, thank you so much for joining us. It's such a pleasure to have you on the show!

Lara: Yes, thank you so much. I'm happy to be here.

Lauren: Yeah! And you've got a book coming out this year. So we're going to definitely talk about that as well. And but as many of our listeners know, we like to start these interviews by just finding out the basics, and I'd love you to tell us how and when you first realized that something was going on with you.

Lara: You know, I've been thinking about this a lot lately, as I've been writing my book, and as I talk more about my illnesses. I always used to associate it with when my periods started.

Because my periods were just really, really painful — from the get-go.

But I was actually thinking about it the other day, and I realized that I remember having chronic pain, of sorts, when I was in sixth grade. That's when I started noticing my abdominal bloat, my abdominal swelling, and my abdominal pain.

Lauren: Around your period?

Lara: This was before my period. So that's sort of been weird for me to think about. But I don't think I really realized that I had a chronic illness until maybe three years ago. I always knew … like, yeah, it doesn't have a cure. But in terms of really taking that in and learning what it means for my life, I'd say it's been only in the last couple of years that I've really been, like, okay, this is a thing.

Lauren: That’s amazing. Well, especially because people who know you, know you for being very open about what you've been through, and trying to find alternative methods to cure your pain and to manage it. So it's really amazing, because this really speaks to the idea of being a woman in the medical system and in the world, right? That it often takes time to realize that … actually, this isn't normal. And we’re not really talking about the stuff … which is exactly why you talk about it.

Lara: Definitely.

Lauren: So, what did you eventually get diagnosed with? What's the whole picture that we're looking at here?

Lara: So I've been diagnosed with about 10 to 12 different things at this point, but ...

I was officially diagnosed with endometriosis around six years ago.

You can only be, technically, diagnosed with endometriosis through surgery, for anyone who doesn't know. So it’s really invasive and cost prohibitive. But my surgery actually made me feel 10 times worse and I ended up with all of this unexplained pain. At that point in my life, I was very sure that the surgery was going to cure me. I thought, okay, I'm going to go in and I'll come out and I'll feel better — and I won't ever think about this again. I look back on that now, and I’m, like, God, that's sad. I wish. Not a reality for chronic illness — as anyone listening probably realizes. And after that I ended up having to go to Mayo Clinic, and I was diagnosed with vaginismus, vulvodynia, overall pelvic floor dysfunction. Since then, we've added PMDD (premenstrual dysphoric disorder), interstitial cystitis, vulva vestibulitis. So many different things.

Lauren: Can you tell us what some of these things are, for people who aren’t so familiar?

Lara: It’s all variations of pelvic pain. With vaginismus in particular, it’s really difficult to have anything enter your vagina, basically. Penetration for me as a straight woman is impossible, for a number of different reasons. The most being that it's f*cking painful, and I just don't do it. And then vulvodynia is more like the opening of the vagina and it's a burning and fiery sensation; it’s more of a nerve situation. Pelvic floor dysfunction is when your pelvic floor just isn't working. You can have incontinence, and always feel like the urge that you have to pee — which, people sort of brush that off as a side-effect, but it's the most annoying thing if you deal with it.

Lauren: It’s super annoying!

Lara: It’s horrible, and I hate when doctors say, “Yeah, you just feel like you have to pee.” And I’m, like, “It keeps me up at night; it is miserable”. It's like interstitial cystitis, but it's more commonly referred to now as painful bladder syndrome. It’s something that is associated with pelvic floor conditions, and also with endometriosis.

But it's not something that's really taken seriously, in my opinion, or is recognized often. They say, “Oh, you have endo.”

It's like a cause-and-effect, in my opinion. It's not proven that having endometriosis means you also have pelvic floor dysfunction. Not every single one that I have, by any means. But they're often associated with one another when there's trauma.

Lauren: You've talked about this a lot, and you're really open and have helped a lot of other people realize that they have more going on than they think they do. So, how does it change your relationship to your body as a woman — and you're a sexual person, you're a sexual being, right? How does having pain and discomfort in the place where you're supposed to feel good, change your relationship to your body?

Lara: It's interesting that you say that I'm a sexual person, because for so long, I didn't feel like I was allowed to be. I've always wanted to have sex. I've always wanted to enjoy it. But because of my conditions, I've never been able to have pain-free penetrative sex, in my entire life. For a really long time, orgasms were really painful. So to answer your question, it destroyed my self-esteem. I just felt betrayed by my own body — especially like you said, the area that's supposed to bring you pleasure. It felt terrible. I just avoided everything all together. I hated my body for what it did to me. And you know, it still does. I’m just trying to get to the place where I can realize that my body and I are actually on the same side, and we're fighting this trauma and this pain together. It just doesn't always feel that way.

Lauren: And there are a lot of new coping techniques and devices out there, things like the O-Nut and dilating devices that you've talked about a lot. Is it helping, using these tools?

Lara: So that's another thing that I've had to reframe.

I used to think that if I didn't get to a place where I could have pain-free penetrative sex — or even have it at all, let alone be it pain-free — that was my end goal.

And now it's sort of like, oh, my God, the fact that I can orgasm, the fact that I can talk to you about orgasming without bursting into tears, wanting to leave the room and talk about how much of a failure I am or how unlovable I am … I've just changed my goal, I guess.

Lauren: Which takes a lot of work, because it's not just the physical stuff that you're dealing with and the prep work, just to have sexual encounters … it's also a mental battle, isn't it.

Lara: Absolutely. Going to the doctor, if you have a chronic illness … you're anxious, I can't do this, this is going to be terrible. I only associated very, very painful experiences with any sort of sexual encounter. So, for me going into it, of course I had to fully talk to my self and talk myself down and be, like, it's not going to hurt. I still do that, though. I still have that problem.

Lauren: Well, because it's so hard to separate that when you've spent your whole life anticipating pain and managing pain. In, again, this area that's supposed to be a center of joy and pleasure. And to be able to separate the two. I don't know how you get to that point where you can actually make that separation, because it's a part of your existence at this point, right?

Lara: Absolutely. My MO is always to just reframe things. I guess that's what therapy is really! What I've learned the most is: It sucks. But how do I reframe it so that it sucks less?

Lauren: And I guess also having partners that you can communicate with really well.

Lara: I think that's key, to just be able to allow yourself to talk about it and give yourself the confidence to say, “You know what, I'm not going to apologize for this. Because (a), if it's a deal breaker, then sorry, you're really bad at sex. And (b), whatever … it is what it is, everyone has something, and I'm not going to apologize for something that I did nothing to cause.

And even if I did do something to cause this … whatever … I’m not apologizing.

Lauren: It’s really interesting, because you say that now. But even a few years ago, when you started talking about this stuff, being able to say ‘I can't apologize for what my body is doing … it's not my fault … ” You couldn't say that without getting emotional when you first started talking about it publicly?

Lara: No, absolutely. It's sort of been interesting, I guess, to open up about this and sort of cope with it publicly in some ways. Because I look back on some of the stuff that I've made … even in my last relationship, I was sort of open about that in some ways. And I look back on it now and I realize how much I was projecting, and how much I was … not lying to myself, but just sort of how you get with certain things. And it's just been interesting to sort of watch my journey with my illnesses in particular … and my relationship was sort of tied into that … and just see where I am now, versus where I was.

Lauren: Do you think it makes relationships … I hate to use the word ‘easier’ … but because your chronic conditions have taught you to communicate more, do you think that it's made you more forthcoming in relationships at the very least?

Lara: I think so. I used to always say … and I guess sometimes I still do … that my inability to have penetrative sex in particular, and the fact that orgasming for me is painful sometimes … I used to say that it was like a blessing in disguise. Obviously, I would never choose to have this … let me just get that out of the way! If I did not have it, that would be great. But with my partners, we can never rely on one thing. And so it's always about finding the new thing that works, and the new thing that's going to bring us pleasure that day.

And in some ways, I am thankful for that, because it has taught me how to communicate my needs.

And I'm not afraid to do so. And I think sometimes it's hard, whether or not you have a chronic illness, to say, “Hey … ”

Lauren: I think it is. And I think people really look to you now, particularly through your social media feed, because it's so unapologetic. Of course, some of what we put on social media is a projection. It’s editorial in that sense. But it sounds like you've really gone through a journey, in a very short amount of time, where you've been able to articulate, more and more, what's going on and what you need. And as you say, not apologize for it. So that’s exciting!

Lara: Yes, it is. And it helps that I have a community of people living with things similar to me, there to support me. Because I know when I go in and I have to talk to a doctor, and they're treating me like sh*t, and I feel like I need to say something to them, I do think about that. I think about, what would these people online say? Would they be, like, “You need to stand up to him”? What would I say to someone if the roles were reversed? And it's sort of weird but I feel like I have this community of support. I think that's what has given me the confidence to stand up and say, “You know, what? No.” Sometimes I feel like I'm not just speaking for myself. I can't speak for everyone, obviously. But when I talk about these things, I do it so that people who follow me, who maybe don't have a chronic illness, can see this and understand the next time they meet someone in their life who does have it. And remember certain things that we have to deal with on a daily basis.

Lauren: Absolutely. Did you think that you would become that person? Or was it all just total happenstance?

Lara: No. It just came naturally because I had the platform. I still work for BuzzFeed.com. At the time, I was a writer. I'm not a writer now; I just don't have time to write as much for the site.

Lauren: You're still a writer. You're just writing your book.

Lara: Yeah, definitely. Thank you. But I was writing about my life. And I had this thing, which was my chronic illness, eating away at me. And mentally. And I was just struggling, and I just wrote about it — because that's what I do, I guess. It just sort of became this thing where other people related. I don't feel like I have to do it. I enjoy doing it, and I'm happy to do it. And I'm very honored that I have the opportunity to do it.

But I do feel a certain sense of responsibility sometimes. Because I do have a platform, and this is important.

People are suffering way worse than I am. Yeah, I definitely feel like I didn't expect it. But I'm honored that I have the opportunity to hopefully help change the way people perceive chronic illness and chronic pain.

Lauren: I mean, it's very interesting, too, because you were writing at the time and in a workplace that was sort of an exception to the rule, I guess, right? Most people are living with chronic illness and going to work and can't necessarily bring it up with their boss …

Lara: Totally.

Lauren: … or express anything about it. So, I suppose you had that sort of gift, right, in that you were being called to write about personal stuff. And you're not the only one at BuzzFeed who's asked to do things like that. It's kind of Kismet that you ended up in that position, right?

Lara: Yes, it does feel that way sometimes because I didn't go to school for it like a lot of people these days. Not that you have to go to school for your profession these days. But I was in school for communication and public relations; I really thought that I would work in that field. I never saw myself as a writer. I never thought that was something that was in my life. And it just became a thing because it was a way to express the feelings that I had around having this chronic illness, and being diagnosed with it, and all of this pain that I was experiencing that I couldn't say out loud.

A lot of the reason was because I was embarrassed. Because it's vaginal pain, it’s painful sex.

It's all of these things that I don't want to talk about, and I don't know how to talk about it. So I wrote about it.

Lauren: Yeah. And that's probably good advice to people listening. If you can't talk about it, write about it!

Lara: You don't need to share it. I totally get that. I overshare, a lot. But I'm fine with it. But I do think that it is helpful if you're trying to sort through something.  What I found helpful was writing a letter to myself when I first started experiencing the symptoms. And letting her know that adult Lara is on her side now, and that her pain is real. It sounds crazy, and that maybe I go to therapy too much. But it really has been helpful for me to sort of go back in time and relive that, knowing that I have myself on my side. Does that make sense?

Lauren: Yeah, I think that makes total sense — especially to fellow Spoonies who are listening in. So, you talked about your community a moment ago. I want to sort of circle back to that, because I'm wondering if, at any point in this healthcare journey, all the different doctors and specialists that you've seen, whether you found that you needed a personal advocate outside yourself — to bring to these appointments, to talk through things before and after the appointments. Or whether that was you, whether you've become that person, too. Has there been anyone who's been with you along the way?

Lara: You know, my parents are very supportive, but I've lived in a different state than them for six years now. It's not that I couldn't have had someone. I don't want to make it sound like no one in my life supported me.

I don't know that I knew what kind of support I needed, and I didn't know how to ask for it.

So I definitely was that person for myself. But I will say that I have decided to pursue a surgery. And for that appointment with the surgeon, I had a friend go with me. Because it had been a long time and it was a very emotional thing, and I wanted to make sure that I was making the right decision.

Lauren: So you brought this friend with you to the pre-op appointment and to the surgery. Have you had the surgery yet?

Lara: I haven't had the surgery yet. It's in January. I'm actually very anxious about it. As anyone would be. But yes, I brought a friend, and it was so helpful. Because when I walked out of there, I was absolutely overwhelmed. And she was there to be, like, “This is what's happening.” And also to say, “Hey, I really liked that doctor. I think it’s a good one.” That's important, because I don't even trust myself sometimes with doctors. I always think that they're against me.

Lauren: Because it sounds like you've experienced a lot in the medical system. I guess you've come across doctors who didn't believe you for a really long time.

Lara: For sure. That’s like 90% of my experience. So of course, I don't think that they're on my side — because, quite frankly, they haven't been. But it's hard because then when I find one — like I think my surgeon now is a really good egg —  but I don't know that I would have felt that if I hadn't had my friend reassuring me.

Lauren: You would have been more cynical.

Lara: I still am. When I go in between appointments with her, leading up to the surgery, I'll find myself questioning … Was she good? Does she believe me? Is she in this for the long haul?

What if this doesn't work; is she going to just discard me like the rest?

Lauren: But it's interesting because it seems like maybe that narrative has shifted, from you questioning yourself to questioning other people. Which is probably more productive in some way.

Lara: Totally. I used to have so much anger for my body … which I touched on a little bit earlier … hated my body, felt betrayed by it. Now I have anger toward the medical professionals that I saw, that treated me the way that they treated me. That disregarded my pain, that gave me inadequate treatment. That's where I channel my anger now, And quite frankly, I think that they deserve it — because I don't believe that I would be in this amount of pain or this sick had I been given adequate care the 27 times I tried to get it.

Lauren: Wow. Now, what would you say to people who are listening who are going, “Yeah, but if you shift your mindset and move that energy …” F*ck those people?

Lara: Yeah, I would literally say, f*ck off. I am 100% on board with the concept of mental pain.

I am 100% aware that a lot of my pain is rooted in trauma.

And I know that I need to work through that. But guess what, I am working through it. And when you have the addition of physical pain, it's not realistic to tell someone with chronic pain, “Oh, just think your way out of it.” Because it's f*cking chronic. If I only had one day of this and stubbed my toe — like you, Joe — I’d be fine.

Lauren: It’s always Joe!

Lara: I know. Anyone who says that just doesn't understand … congrats … that must be nice.

Lauren: Yeah, absolutely. So, I'm wondering … prior to arriving at a place like BuzzFeed, for example … as you were navigating your career and your education, how are you managing life with chronic pain day to day — particularly as this was probably well before you had your diagnosis and had started experimenting with treatments.

Lara: I got diagnosed with endometriosis right before my senior year of college. And then I went to study abroad.

I had had that surgery, and when I came back, my pain was 100 times worse.

So I actually barely graduated, because my second semester of my senior year, I was failing all of my classes. I was never going to work — I had an internship at the time. And the boss sat down with me and talked to me and said, “I can't recommend you to any jobs after this. I can't write you a letter of recommendation because you've been absent too many times.” I ended up graduating because my professors, quite frankly, felt sorry for me and gave me a D.

Lauren: So they knew that you were going through something?

Lara: They knew I was going through something, but I didn't talk about it to anyone. And quite honestly, no one would have known what endometriosis was. People still don't really take it seriously to this day. But then, they would have been, like, “I don't know what you're talking about.” So I definitely didn't talk about it. And I also didn't have the concept for what it was. I thought, oh, I was diagnosed with this thing. I had surgery. I'm okay now. After I graduated, I just sunk into a very deep depression. I didn't know what to do with my life. I didn't know what I could do with my life, because of pain. I got diagnosed with all this pelvic floor stuff, because I ended up going to Mayo Clinic because I was so desperate. That was in the summer after I graduated. I was able to go to pelvic floor physical therapy with a really good therapist in Indiana, where I was living at the time. By the time that I got to BuzzFeed, I was not having pain, like I'm having today. It was much less severe. It was definitely there. But it was not on the level that it is today. Endometriosis is a progressive disease. So I believe that it's only gotten worse, on top of not having an adequate care like physical therapy. When you live with chronic pain, your body starts to adjust to having that pain, and it sort of overcompensates and causes you more pain because you're not walking correctly, or whatever. So when I started working at BuzzFeed, I started as an intern; I wasn't fine, but I wasn't taking the amount of sick days that I have to take now. So I don't think that BuzzFeed necessarily created a workspace for me. I think I created that workspace, because I chose to be really honest about my experience. And I had really understanding bosses at a company that has unlimited sick days for everyone. And I think when companies make that, they don't make it with the intent of someone having a chronic illness. But for me, it ended up, obviously, being extremely beneficial.

And now, I am just very open and honest about my pain.

I have told all of my co-workers and my bosses about my upcoming surgery, and about all the things that I have to do to prepare my body. And so they've been very understanding, and I appreciate that. I think it's because I present it very matter-of-factly and I don't ask for permission. Which again, I understand how privileged this is, and I don't want to sound like I think everyone can go to their boss and say, “I need this time off.” I completely understand that's just not how the world works. For me in particular, I'm very fortunate that it is how it works and that I was able to go to them and say, “This is my situation. And this is what I need in order to get better and be an employee that can work 40 hours a week.” Because quite frankly, I can't right now.

Lauren: Well, it's interesting because it really shows you the argument in favor of unlimited time off from employers, first of all. But second, as you do wisely mention, of course, you're speaking from a position of privilege to be able to go to your bosses and tell them what you need. But there are people who are listening who probably have that privilege and haven't exercised it yet.

Lara: It's so hard! I always tell myself … if my boss had this pain, what would they do? The answer is that they probably wouldn't even f*cking be at work as often as I am. And that's no shade against them. It's just that when you have chronic pain, you have this certain level … you can just deal with things that other people wouldn't be able to deal with. I think we put ourselves through so much, because we're so worried that someone's going to notice and say, they're not working hard enough because they have a chronic illness. That's just not true.

I think we work harder than other people because we know that we have to.

Lauren: Well, when you have a full-time job managing your pain, aside from actually working to get paid. So, you're really doing twice the amount of work of anyone else when it comes down to it, right.

Lara: Yes.

Lauren: So do you think that there is any way to find balance when you live with chronic pain, then? Or is that something that's just out of reach, the way our system’s built? It's a big question!

Lara: I think it is possible, but I have not figured it out yet. And I think that it's only possible if we have empathetic workplaces, which is rare. So many of my closest friends are teachers. It breaks my heart to hear how hard it is to take  a f*cking sick day, as a teacher. It's terrible.

We just need to stop having the mindset as a whole that you need to work, work, work, work, work — or you're not worth anything. Because that's just, (a) not true, and (b) dangerous. For everyone. Not just people with chronic illnesses, but especially people with chronic illnesses.

Lauren: Yeah, well, we talk about the concept of burnout a lot. It's kind of a buzzword. But the idea of it actually comes from being overworked and being overstressed. So it starts with the way we're designing our lifestyle, doesn't it … and whether or not that structure works for people.

Lara: Totally. There's no like one-size-fits-all for anything. And that includes work. I think employers need to be more understanding. As long as you're getting the job done, why does it matter?

Lauren: Yeah, absolutely. So, you mentioned the many, many doctors who didn't believe you. I'm wondering if you have any specific experiences that you can recall that aren't too painful to discuss. Or maybe use it as an excuse to get that anger out … that you can tell us about doctors … or not even doctors but anyone, even employers, friends, family, that you were forced to justify your pain and your illness to? People who just didn't believe you because they couldn't see it?

Lara: Yeah. There's a lot. I've ended up in the ER, in an ambulance from passing out — from how extreme my pain was. And had the doctor tell me to take ibuprofen, literally. Didn't run a single test, didn't talk to me about my symptoms, told me it was my period and to take ibuprofen — even though I had told him 10 times, I wasn't on my period. And also, if I was on my period and I was passing out, that still wouldn't help me. Actually, just this week, I had an experience with one of the specialists that I'm seeing now. It’s hard because you think those people would never make you feel this way. But really, it's like any doctor, ever.

And I think doctors really don't know how to handle chronic illness.

Lauren: I think that's very well observed.

Lara: And I think they just get sort of frustrated with themselves, and frustrated that they can't do what they want to do — as this professional and as this expert in their field. You know, I had an experience this week with a specialist that I've been seeing for a few months. He's a pain specialist. He's very well respected and knows a lot about endometriosis. And I'm not responding the way that he had hoped to some of my pain management, prior to my surgery — we're trying to get my pain levels down so that I recover easily. And I felt like he blamed me for it. It was really, really, really difficult. Because I felt like, at this point in my journey, when I'm paying for all of these specialists who know so much about my disease, that they, of all people, would understand what it's like. And that I've done nothing wrong and that I'm doing everything I can, and that this isn't my fault. But I think unfortunately, like I just said, their pride sort of gets in the way sometimes. And he looks at me like a problem to fix. Maybe that's the way his brain works. And when he can't fix it, he gets frustrated and turns it around on me and is, like, “Well, you need to do this … or you need to do this … or you're not doing this …” And that's not fair. That's not fair. And I'm tired of it being turned around on me. Instead, I would much rather a doctor approach me and say, “You know, I don't know why this isn't working, but let's try something else, or let’s see if we can refer you out to someone else.”

Lauren: That's the removal of ego there, isn't it.

Lara: It's impossible for some doctors.

Lauren: And I think also to understand that people with chronic pain … when they've been through what you've been through … your ego doesn't exist anymore. You've been battered by your own body from the inside. And there's no way to have an ego about “Please just make me stop hurting.”

Lara: No.

I would beg on my knees for someone to help me and to take me seriously.

And I don't think that doctors understand how important bedside manner is. That's what he was lacking. So it goes from an experience of where I'm ending up in the ER room after passing out and being offered ibuprofen, which is f*cking insulting … to almost 10 years later, here I am. And while the doctors are supposedly taking my pain seriously, will still sit there and be, like, “I don't know; it seems like you're doing something wrong.”

Lauren: Not the right kind of ‘I don’t know.’

Lara: No. And I just wish that they would understand how detrimental that is for us.

Lauren: Yeah. Well, and it’s interesting, too, because I think there are also different kinds of personalities and different kind of kinds of minds, right? We like to think that people who go into medicine have logical minds, because they're trying to connect the dots. But sometimes that also means that there's a lack of empathy or bedside manner. It's funny, because the more I talk to people, the more I think, okay, so how do we offer solutions? And the more I think: It’s an extra year of medical school — and it's all about bedside manner, and learning how to be a nice person. Because not everyone learns that, do they.

Lara: No. No! You would think that it just comes naturally, but it absolutely does not.

Lauren: Because a lot of people can't read the room. Some people are like that, right?

Lara: It's so weird. Sometimes I wonder … Do I understand this stuff because I have a chronic illness? Or would I be more understanding in general? I feel like I'm a pretty understanding person. I feel like most people are.

Lauren: “How can I help?”

Lara: Of course. I just don't understand where the impulse comes to be, like, “You’re lying.”

Lauren:  Do you think this is a male/female thing?

Lara: I don't. I've been treated terribly by both. I would rather see a female doctor, I’m not going to lie to you, because a lot of my problems are associated with the female anatomy. It makes more sense to me. But I will say that I've been treated horribly by both.

Lauren: It’s really amazing to me. But despite that, have there been some people in there who've really treated you well?

Lara: You know, this is what I talk about with the intersection of holistic and Western medicine. The most affirming, kind, caring, compassionate people that I have seen, who have actually tried so hard to help me and have believed me from day one, have always been holistic doctors. People who aren't considered real doctors or aren't covered by insurance. Again, privileged to be able to see those people. But I think that is what was such a turning point in the journey for me, in many ways.

Because never once did they ever question me. In fact, they would spend hours trying to make me feel better.

They would research things. They would read studies. And I go in to see my f*cking pain specialist, and he asks me what I do for a living — for the 10th time in a row. The difference is astounding. I think I'm at the place now where, personally, I'm in the intersection of both. I need Western, I also need holistic. I think that whatever works for people is what they should do. But I think that anyone who is fully Western, science-based, evidence-based is missing the fact that evidence-based and science-based is very discriminatory and doesn't care about women's health, quite frankly.

Lauren: Yeah, absolutely. And this is the thing that it comes down to, isn't it … that when you don't believe women when they tell you that they're in pain, then you're endangering their health. Full stop.

Lara: 100%. People have died, a lot of people. It’s dangerous. It’s very f*cking dangerous.

Lauren:  And I think to myself, if this were 100 years ago and you were going to a doctor with the same symptoms, they would have said, “She's an hysteric.” And either put you in a sanitarium or tried whatever therapy — shock therapy, whatever — none of which would have actually targeted the issue that you're having.

Lara: You know, it's interesting …and I don't talk about this very much … but I had a great-grandmother that was in a mental institution, and she ended up committing suicide. She was experimented on a bit, she was called hysteric, she had shock treatments.

I think about her a lot because a big part of me wonders if maybe she had similar symptoms to me.

Lauren: Wow.

Lara: Because, you know, it runs in the family. It’s genetic. So I think about that a lot. I don't know. I didn't know her. I can't speak to it. But I've always wondered about that.

Lauren: Gosh, I'd be curious about that, too. I think that's a really interesting observation. And I wonder also, because you were talking about these holistic practitioners … and this is just something that I've been super curious about, and maybe I've missed the update somewhere … but when you did Can We Cure a few years ago with Kelsey, you guys went to a clinic in Florida that did laser treatment, right? And they gave you — to take home with you — basically a laser dildo, for lack of a better term, right? That you were actually able to use to penetrate yourself, and you were actually able to keep it there for longer than you'd ever experienced.

Lara: Yes.

Lauren: I’m wondering if that's something that you're still using in your treatment protocol? Or if there are opioids that you're using now, whether you’re been offered those? Sort of what it looks like for you as you manage everything.

Lara: I'm not on any opioids. I use medical marijuana.

Lauren: Yes, this is your big thing.

Lara: I use it for pain management. I’m a big believer. I'm like that annoying dude that’s always, like, “CBD!!” I understand also that it doesn't work for everyone. I just believe that everyone should have the opportunity to try it. But I do still use laser therapy, I do. I believe that it's helpful. But I think it was presented and what I tried out, was laser therapy by itself.

Now I take a much more integrative approach.

I'm in pelvic floor physical therapy. I'm seeing a pain specialist, chiropractor, acupuncture, laser therapy … all of these things that I can do … my diet, getting surgery.

Lauren: It's really a combo of everything.

Lara: And that's what I'm learning about chronic illness and what makes it so f*cking hard to have one … on top of it just being terrible … is that the treatment for it, I really believe, is a big approach of a lot of different things. And that’s, unfortunately, not how most Western doctors approach it.

Lauren: I think you're absolutely right. And you've hit the nail on the head, because I think most people who are really successfully managing their issues are doing it with a number of different approaches. It's never just like, “I take this pill and it's fixed.”

Lara: No. God, no. And when you have chronic pain, even if it's just in your f*cking arm, it's going to affect your whole body. You're going to walk differently, you're going to sit differently, you're going to adjust around that arm.

And any doctor that comes in and just looks at your arm is just being negligent —because your whole body is affected.

That is what I've learned. I believe it wholeheartedly, and I don't know many doctors that share that sentiment. And that really bums me out, because it makes perfect sense — of course your whole body would be affected. Yeah, of course, we need to look at it as a whole body approach. Why wouldn't you? But they don’t.

Lauren: Absolutely. Were you ever offered opioids and just decided to focus on the medical marijuana approach?

Lara: Medical marijuana just happened accidentally when I moved to California. I was offered opioids early on … that and a hysterectomy were the things … which, by the way, is not a cure for endometriosis.

Lauren: Say it louder for the people in the back!

Lara: I know! I was also 21years old at the time.

Lauren: Well, it's lucky that you did your research.

Lara: I didn't even. I had no clue. I would have fully believed that.

Lauren: So you could have had a hysterectomy at 21.

Lara: For sure, I would have, and it would have done nothing for me. And I would have been worse off. That's what they offered me. The opioid thing, I don't know why I didn't take it. I don't know. I had been on a couple of different antidepressants that they had prescribed me for my nerve pain, and I had had really bad reactions to them.

I was just very scared of taking another prescription pill.

Lauren:  I suppose this was also at the height of the crisis, too, when all you hear is, people who take them become junkies.

Lara: Totally. And I just didn't know. I didn't know anything about endometriosis. I've learned so much.

Lauren: And you’ve learned it because you started talking about it, right?

Lara: Yes, which is sad. I didn't learn this really because I went to go see a doctor. Ninety percent of what I know about it is because, (a) other people in the community have taught me, or, (b) I've read it myself in an article. You just learn as you go when you start talking about it. But, yeah, opioids … I'm very lucky because I do believe that if I still lived in Indiana, a state where weed was not legal, and I was in the amount of pain that I'm in now, I probably would take them. And I understand why someone with chronic pain would. It’s unfortunate that it's really stigmatized. I understand, I get that.

Lauren: But a lot of people need them.

Lara: Yeah, a lot of people f*cking need them. I would never shame someone for that. And I'm lucky that I'm able to live in a state where I can use marijuana. Not everyone can do that. So yeah, I never ended up taking them. But for the record, I support anyone who needs them.

Lauren: I think that's extremely open-minded of you, too. We've talked about a lot of ways in which the health system hasn't worked. What about ways in which it does work?

Lara: Oh God, that’s hard.

Lauren: Are there any redeeming qualities?

Lara: I think that there are good eggs out there. I think that the surgeon I am seeing now is great. I love my physical therapist. But here's the thing: I have to pay out-of-pocket to see both of them. I mean, they're just inaccessible. So it's hard for me to be, like, ‘This is great about the health system” when 90% of people can't see them because of the cost. It’s $900. When I think of them, I’m, like, yeah, that's great, love that. And then I remember, oh, yeah, by the way, pretty much no one can see them because they're accessible. I think there will be good things if they listen to patients.

So many of us have chosen to speak out and are so brave about sharing their stories … I think it will make a difference.

I really believe that. So I think I'll say that I don't think it's really good now, but it will be.

Lauren: I think that's very hopeful. So there's a positive spin on all this! What about media representation, too? Do you think that there are limitations on the chronic illness community because of the way that they're represented in the media? Or that representation itself is limited?

Lara: Listen, if I ever have to watch another f*cking commercial for a medicine for some chronic illness that depicts this person as the most boring person, buzzkill to be around until they take their magic pill that makes them go hang out with their family again … I'm gonna lose my f*cking mind. It's so damaging. And I think that every time I see it.

Lauren: That's the fault of pharma though, isn't it?

Lara: Oh yeah, for sure. F*ck Big Pharma for that and for many other things. But yeah, we’re often portrayed as, like, if we're not whining about something, then we're just like a buzzkill. I think that's bullsh*t. I would like to see that change and I will do everything in my f*cking power to change it for my specific condition, but also hopefully chronic illness in general.

Lauren: What does that look like … restriction on advertising budget? Is that something that has to come from the federal level to pharmaceutical companies, and we have to sort of pull money and things?

Lara: I think that we take power away from Big Pharma, yeah, and not let them have so much power. And sort of monitor their advertisements. But I think, on a bigger level also, more people are speaking out about chronic illness — which means that it's easier for media outlets and media companies, and places like Netflix and TV producers and whatever the hell they do, to find someone to accurately represent something if you're going to talk about it. I mean, that's what you should do for everything.

You shouldn't write about an identity without consulting someone in that identity, in my opinion.

Because then it's just messy. If some dude is going to write about a girl who has endometriosis, and he has never had endometriosis and can't have endometriosis … I'm sort of rambling.

Lauren: Not at all! That makes total sense. You're really saying that to fully understand it, in order to properly represent it, you need to speak to the people who are the experts, who are the patients.

Lara: Or just listen to them. We’re here, we’re talking, there’s a lot of us. There's power in numbers. Just listen to us; it’s not that hard.

Lauren: You would think it would be so much easier, but a lot of the time it’s, like, where's the money, right? Is there money in me listening to you?

Lara: Absolutely. I was talking about endometriosis for a long time, and now that it's sort of a buzzword, all of a sudden the different opportunities come. It’s, like, you care about this now because it's a thing, and I'm glad that it's a thing, and I will be on board for this.

But also, like, where the f*ck were you four years ago? People were still suffering, you know.

Lauren: So, okay, we know that you are an advocate. Tell us about the book that you're working on right now. Because I bet everyone listening is really excited … because I am super excited!

Lara: Thank you. The content is done, which is really exciting, and it will be out on October 6, 2020.

Lauren: And what is it called?

Lara: It’s called Vagina Problems. And it'll be essays about endometriosis, painful sex. But I also have a lot of stuff just generally about living with a chronic illness in there. I'm going to plug myself a little bit here … I do hope that anyone with any sort of chronic condition or who is dealing with chronic pain can find something in there for them. I hope. That’s my goal.

Lauren: I would think so. I mean, even talking to you now, and talking to the people who I've talked to before on the show, it's very clear to me that there's overlap in experience for sure.

Lara: Absolutely.

Lauren: When you're a Spoonie, you’re a Spoonie. Those experiences may be different. But there may be similarities within them. And it sounds like you're definitely going to address that. And I'm super excited. So it's a collection of essays.

Lara: Yes. The idea is, having vagina problems and the way in which that impacts every part of your life. So there's essays on friendship, essays on dating, essays on being in an actual relationship with someone — and what that looks like when you have a chronic illness. Essays about work. I wanted to depict how this really does affect every f*cking part of your life.

Because I think a lot of times, with my issues in particular, people are, like, “Oh, your periods hurt?” And I’m, like, “No, I wish, b*tch. I wish that was the only thing.”

Lauren: And that's the thing with endometriosis in particular, and with the comorbidities that you've discussed as well. It’s not as simple as basic pain. It’s constant pain. It's constant adjustments in your body and other systems of your body in order to cope with the pain. And endometriosis … you can't just have a laparoscopy and have the endometrium removed. They continue to grow back, particularly if you have adenomyosis and they start fusing organs, and things like that.

Lara: Yes, and the stuff that I've learned about endometriosis in the past six months, and the way that it attacks your body, it creates its own blood supply. I mean, it's a f*cking doozy, and people really act like it's like stubbing your toe. I don’t know why … I keep going back to that example, for some reason. I think I stubbed my toe recently and I keep talking about it! (laughs). I don’t know where it’s coming from!

Lauren: I like it.

Lara: It really is such a serious and debilitating, progressive disease. And the earlier it's found in young people, the better. And the more informed they are to make decisions and to get diagnosed, the better.

And I will never shut the f*ck up about this until people understand how dangerous this is. It's a public health crisis.

Lauren: Yes, absolutely. And it's one in 10 women who have it. That’s the people who've reported it.

Lara: That’s the diagnosed. There's probably people today sitting there, trying to talk to their doctors as we speak, saying, “I’m in so much pain.” And the doctor is probably, like, “Take ibuprofen.” So it’s very much still a problem.

Lauren: Or hand them The Pill. That's what happened to me when I was younger.

Lara: Yeah, I was on The Pill for eight f*cking years.

Lauren: And that does a whole host of other things to your body. I'm not against birth control. I'm like, go live your life …

Lara: But we should be able to freely admit that it can be improved a lot.

Lauren: Well, and the fact that your doctor never sits down with you when you're 15,16 years old and first being prescribed The Pill, to say, “Here are the good things it does. And here are the bad things." There's never a discussion about that. You're expected, as a teenager, to read the insert in the pamphlet. And you’re, like, I’m not going to read that.

Lara:  Right, I’m a 28-year-old and I’m not going to read that sh*t. No one reads it. Whoever wrote it didn’t read it. It's not real, and they also just hand it out like it's f*cking candy now. They’re, like, “Oh, do you have acne? Take birth control. Does your back hurt? Take birth control. Did you stub your toe? (laughs). Take birth control! It doesn't affect everyone the same way, and it didn't agree with my body.

Lauren: You're probably lucky that way, because you didn't have to f*ck around with it for too long.

Lara: Well, eight years.

Lauren: Yeah, too long. It’s relative.

Lara: People ask me this a lot on Instagram … why I don't take birth control. Because it just doesn't make sense to them. It can help your period pain, a lot — and I get that. But it f*cked with me a lot.

As crazy as that may sound, my period’s definitely terrible. But birth control made other things really, really terrible, too.

It’s sort of, like, okay, which one am I going to deal with? And I didn't want to be on birth control anymore. I just couldn't do it.

Lauren: Yeah, good for you. I mean, it sounds like you're so aware of the side-effects of these different things because you've, again, done your due diligence. It takes time, but you do learn these things from your community, and as you speak out and reach out more about this kind of stuff. So if that's not an advertisement for being informed, I don't know what is. And it's interesting, too, because I talk with my friends about how the male birth control pill was invented years and years ago — and never went to market, because there were too many side-effects. So it's our responsibility as women, right, first of all. But then also, we have to deal with side-effects. Some women have adverse health side-effects; you obviously did when you had to stop taking The Pill. So there are two sides to every coin, right.

Lara: My biggest thing with anything around that stuff is, whatever works for your body is what you should do. And I would never judge someone else. And I know you feel the same way. But I do feel that oftentimes when we talk about the problems with stuff like that, people who do rely on that stuff can feel ostracized. I think that's what's missing from the chronic illness community sometimes … this idea that if it works for me, it should work for everyone else with this illness. And that's just simply not how it works. I just like to mention that because it makes me, personally, feel better, too. Because I don't always fit in this box of what has worked and helped other people. And then I sort of end up feeling like a failure.

Lauren: So, we’ve covered so much today, and I like to wrap up my interviews with a couple of Top Three lists. And I was wondering if we could start with your Top Three Tips for someone who maybe suspects they've got something off, needs to go to the doctor and get stuff checked out. Or maybe they've already been diagnosed and they're living with chronic invisible illness. What would you recommend to these people to manage their way through it?

Lara: Let me think … Okay, number one … try and get someone on your side. We talked about that earlier. I think having friends who understand that now  … because I do have a lot of friends who have chronic illnesses now … but also just having a friend in general, who will be there for you and attend doctor's appointments with you if need be, and just advocate for you when you can't advocate for yourself. That would be one of them. Another one is to remember that doctors work for you.

Lauren: I love that one. That's great.

Lara: It’s literally, if you're not doing your job, bitch, I will fire you. I will find someone else. Again, I recognize it's a privilege.

But if you have the opportunity, remember that your doctor works for you — and it's not the other way around.

Lauren: And I suppose that goes hand-in-hand with: You're the boss of your body. You make the decisions.

Lara: Yes. And I think that would maybe tie in with my third one … which is, be on your own side and be kind to yourself. Because life, having a chronic illness … it's really tough sometimes. And it's way tougher when you don't have your own back. When you are mean to yourself and think, if only I had done yoga today, or if only I drank my juice or whatever, then maybe I wouldn't be feeling this way. Don't do that to yourself. I know it's way harder to put that into practice. But be on your own side.

Lauren: I really love those. And also, you mentioned a lot during the interview … this is tied in with finding people who are on your side … find your community also. Not just your personal advocates that you can turn to when you need a friend to go to a pre-op appointment with you, but also having that community that you can learn from and grow with, right?

Lara: Yeah, it’s having that community that you can go to and say, “What's up? My vagina hurts today.” And they're not going to be weird about it. They're gonna get it. “Oh, like what kind of pain? Would it be like, have you stuck your dilator in yet, or what's the situation?"

Lauren:  I love that. Okay, last Top Three list. Top three things that give you unbridled joy, that you are not willing to compromise on despite lifestyle changes that you may have made to manage your chronic illness. They could be comfort activities when you have a flare-up. They could be guilty pleasures, secret indulgences. Or they could just flat out be sh*t you aren't going to not do because you love it.

Lara: This is hard because some of this stuff is tied in with what makes me feel really good with my chronic illness now. But either way, if I suddenly woke up tomorrow and didn't have chronic pain anymore, I would still get high off my ass. I'm not giving up weed. It makes me so f*cking happy. I love it. Everything’s better with weed. So that's something I am not f*cking giving up. My second thing:

When the Earth ceases to exist because of global warming, I will still be taking hot baths.

And if it's my fault that the Earth ceases to exist, that’s something that I'm just gonna have to live with because I love a good, hot bath.

Lauren: I don't think it'll be your fault. Don't worry!

Lara: I’m contributing a little bit, but it’s okay.

Lauren: We all contribute by existing. You're born and you’re a contributor.

Lara: Yeah, for sure. My third thing is this giant almond marzipan croissant that I get at this bakery down the street from me.

Lauren: What is it called? And where can we get one?

Lara: It’s called Cafe Los Feliz. It’s amazing. My favorite in the world. And it's like $4, maybe $5. It's giant. I'm talking like, giant. It's amazing. Sugar sort of makes my inflammation worse. Gluten makes my inflammation worse. I’m not supposed to be having these things. But guess what, bitch, I don't care. I'm still gonna eat that. It's so f*cking good.

Lauren: It's a good treat.

Lara: Oh, it's amazing. Anytime the guy that I'm seeing comes to visit — because he doesn’t live here — we get 10 of them.

Lauren: And you just lock the door, lock yourselves in, and just gorge yourselves.

Lara: Yes, it’s so good. It's the best thing.

Lauren: Probably also to add to your list, to enhance your list … just based on how I know you from social media, which is not at all … but I think also masturbation and sex?

Lara: I was just going to say that!

Lauren: These are things that could potentially cause you pain …

Lara: They do!

Lauren: But you found ways to give yourself pleasure, and to make sure that you are getting something good out of your body.

Lara: 100%. You are absolutely correct. My ideal situation would be: I'm high, in a hot bath, with my croissant, masturbating.

Lauren: Oh, yeah! (laughs)

Lara: Perfect thing. That's all I want out of life. And you know what? I can get it. You're so right; that is very important. Those things do cause me pain, and you know what … I don't f*cking care because I still want to orgasm

Lauren: And sometimes you just need it for a stress release, or just to remind yourself that your body can still give you good things.

Lara: Yes! My favorite thing to do is to just take hot pictures and then masturbate.

Lauren: Basically you're posting the hot pictures … Guys, every time Lara posts a hot picture of herself, she's masturbating.

Lara: I just get so turned on by this confidence that I never thought I would have. It sounds crazy, but I look back five years ago and I’m, like, oh my god, Lara never thought she would get here and b*tch, I'm here. I'm gonna celebrate it.

I love it; I love the person that I've become. I don't care if people think that's conceited, I don't care because I just love myself.

Lauren: And who you are is not chronically ill. That's part of who you are.

Lara: Yeah. And I've just chosen to embrace it. There are so many times when I wake up and I'm absolutely miserable and want nothing more than to be free of this. But there are also days when I wake up and say, you know what, what the fuck ever. I have this thing I'm just gonna be me and I'm not gonna let it like make me feel self-conscious or make me feel any less cool. I’m f*cking great and my chronic illness isn't changing that, you know?

Lauren: Well, I second that motion. You are f*cking great.

Lara: You are f*cking great.

Lauren: It has been such a pleasure to have you on the show today, and I'm really excited for everyone listening to get to know you a little better. Because guys, If you're not already following Lara  … and please tell everyone listening where they can find you and your work.

Lara: Yes, the easiest place is to follow me on Instagram. It's @LaraEParker. It's not Laura. That is my name. It’s not Larae. Oftentimes, people do think my name is Larae. Which honestly, that's fine. You can call me that.

Lauren: That’s actually not a bad name. I kind of like it!

Lara: Yeah, I mean, it's pretty chill. I don't know any Laraes. If you want, just follow Larae Parker. That’s my new thing! (laughs)

Lauren: (laughs) That's great! And then, also, people can find your writing on BuzzFeed. And your book’s coming out October 6.

Lara: Yes. Please buy Vagina Problems, October 6, 2020. It's coming out from St. Martin's Press. And I hope that you like it. And if you don’t, well, that's fine, you know?

Lauren: Absolutely. Well, Lara, it has been such a pleasure. Thank you so much for being on the show, and Happy New Year.

Lara: Thank you so much. Happy New Year.