Endo Battery

Navigating the Emotional Terrain of Mental Health and Endometriosis: Casey Berna, LCSW

• Alanna • Episode 78

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TW* Pregnancy loss, infertility, suicidal ideation 

When Casey Berna, a fierce clinical social worker and endo warrior, graced our podcast, the air buzzed with the spirit of advocacy and the unwavering strength of those battling endometriosis. Her story is one of transformation—from personal trials with endometriosis and infertility to a beacon of hope and guidance for thousands. Join us as we navigate the often unseen trials of chronic illness and mental health, spotlighting Casey's remarkable journey and her tireless work in patient advocacy, including her influential role in shaping the National Action Plan for Endometriosis.

The support that cocoons us in our darkest moments can be as crucial as the air we breathe. This episode sheds light on the silent warriors—the caregivers who stand by those grappling with endometriosis. We share invaluable resources and insights to aid in understanding and managing the emotional weight that caregivers shoulder. Through candid conversations, we reveal the emotional toll on those caring for loved ones, and how fostering empathy within support systems can build resilience and understanding in the face of chronic illness.

Empowerment threads through our discussion as we underscore the importance of educating young people about their bodies and conditions like endometriosis. By dismantling the barriers of secrecy and shame stitched into past generations, we pave the way for open dialogue and community support. Our exploration culminates in recognizing the solace that communal bonds provide to those feeling isolated by their condition, and how discovering purpose through advocacy can reignite a sense of control and belonging. Casey and I invite you to pour a cup of tea and join a table ringed with shared experiences, understanding, and an ironclad community spirit.

https://www.caseyberna.com/

Website endobattery.com

Speaker 1:

Welcome to EndoBattery, where I share about my endometriosis and adenomyosis story and continue learning along the way. This podcast is not a substitute for professional medical advice or diagnosis, but a place to equip you with information and a sense of community, ensuring you never have to face this journey alone. Join me as I navigate the ups and downs and share stories of strength, resilience and hope. While navigating the world of endometriosis and adenomyosis, from personal experience to expert insights, I'm your host, alana, and this is EndoBattery charging our lives when endometriosis drains us. Welcome back to EndoBattery. Grab your cup of coffee or your cup of tea and join me at the table. Today, I'm joined by Casey Berna.

Speaker 1:

Casey is a clinical social worker that began her work in endometriosis, fertility and pregnancy loss communities after experiencing these difficult health struggles herself. For over a decade. Casey has supported thousands of patients through counseling, support groups and her role as a patient advocate. She collaborates with global nonprofits and community leaders to challenge the systemic issues that are causing patients harm, while also being a leading voice on the impact these issues have on mental health. Over the years, casey has presented her work at national endometriosis conferences and has been part of many panels as an expert mental health provider. Her documentary Endotruths the Impact of Endometriosis and mental health provider. Her documentary Endo Truths the Impact of Endometriosis and Infertility on Mental Health was accepted into the Unmentionables Film Festival in New York City. Casey is proud to be an assistant producer of the film Below the Belt and was honored to collaborate with EndoWet to help craft the National Action Plan for Endometriosis, which was presented to members of Commagurus in 2023.

Speaker 1:

Please help me by welcoming Casey Berna. Thank you, casey, so much for joining me today. I'm excited to have you on. You've been doing so many great things within the endometriosis community and it's just an honor to have you join me today at the table.

Speaker 2:

Oh goodness, that is so kind. It is truly an honor and privilege to share space with you today and thank you for all that you do for our community.

Speaker 1:

Yes, absolutely Takes a team to make it happen. Right For sure. You work in the social work arena, but you are also an endo warrior. How did you marry those two to do what you're doing with advocacy and awareness in this community?

Speaker 2:

Absolutely. It was around the same time, I would say, that endometriosis started impacting my life, although it would be many years, like many patients, before I received a diagnosis or knew what was going on. And also around the same time, in high school, I really became interested in social work. My high school that I went to had a lot of social justice classes and I really enjoyed talking to my school counselors and learning about what they did. And I decided to go to a college that had a five-year program for social work where I could get my MSW, you know, just a year after graduating undergrad, which I was really excited about, and at the same time I started having.

Speaker 2:

In high school I got my period and started having a lot of stomach issues. By the end of high school, and certainly like by the time I was in college, I was a regular at the gastroenterologist, having all these tests and procedures which I know a lot of patients can relate to and you know them just saying oh, I think it's anxiety or oh, I think it's stress. I'm like you would have stress too if you had horrible periods and were prone to like if you had horrible periods and were prone to like, you know, chronic diarrhea. That would also be stressful. So then I graduated and started working in a school setting where that was all girls and actually now that I look back on it probably had a lot of students who also had endometriosis, but I didn't know at the time.

Speaker 2:

And then my periods became worse and worse and eventually I got married and started having fertility issues, which is when I was diagnosed, finally, with endometriosis. And yet still they kind of said, oh you have a little bit of endometriosis, that the reproductive endocrinologist still didn't really have a grasp on my disease. So it took me even years after that I had appendectomy, I had my gallbladder out, I had years of fertility treatments and it really wasn't until I was probably about 30 years old that I finally saw an endometriosis specialist. And after I learned more about it and also went through recurrent pregnancy loss and infertility, I was kind of like goodness my social work skills could be used in the community, that it absolutely had impacted my mental health and there were so many unique things about endometriosis that made it incredibly challenging, whereas mental health support was so needed. So then after that I just started working, doing counseling with patients, working with endo warriors, to start doing support groups in my area and then also started doing a lot of advocacy, and that's kind of how it all came together.

Speaker 1:

Can you define the role of a social worker, because I think you know a lot of us are aware of therapists and counselors and other mental health support people, but they're not aware of the social work aspect of it. Can you tell us what the role is of a social worker and what they do?

Speaker 2:

Yes, I was drawn to social work because I love how it's sort of all encompassing, like you can sort of, as a social worker, be a licensed clinical social worker and focus on clinical social work, which is that of a mental health provider similar to other mental health providers in the field. But what I also really love about social work is, by nature it's kind of a multidisciplinary approach. By nature, social workers look to resources and the community to help support patients. They look at the systemic issues that are happening in the community that can. What are the patient's resources, what are their strengths, what is their family dynamic look like? But then you also look at how do the ACOG practice guidelines impact patients?

Speaker 2:

How does health insurance impact patients? How, you know, do the education that providers get impact patients? What are, like, community resources that can help support patients? So that's why I've always been passionate about social work, because it just encompasses not only mental health but also you have to look at like how does racism impact patients? You have to look at all of these broader issues that absolutely have an impact on their mental health and well being as well.

Speaker 1:

Absolutely. What are some of your biggest challenges that you face in doing what you do? I?

Speaker 2:

think you know, when I lived in New York City, I lived. Well, I didn't live in New York City, I lived just outside, but I had a practice in New York City for a long time and I felt like there were more options for multidisciplinary care. Now I'm in Wilmington, north Carolina, so one really big challenge that I have when I meet with a patient is the fact that there is no endometriosis excision specialist in Wilmington, north Carolina. Not a shocker, not a shocker even though there are providers who may think they're specialists.

Speaker 2:

So I think that's a really big challenge for my patients in particular is I'm sending them hours away to try and get care. Another big challenge I think for all patients is finding a provider that is accessible, right, affordable, accessible, like takes their particular insurance. So that's like a really big challenge. But then you also have things like I have patients, multiple patients who say they have a parent who's a narcissist, you know, suspected, has narcissistic personality disorder and sort of trying to navigate their disease like without that support. Or you know patients who are feeling a lot of anxiety.

Speaker 2:

I think I forget what the statistic is, but a lot of patients with endometriosis experience anxiety, depression and also sometimes suicide ideations. So I think that's also a really big challenge for patients is having those challenges like on top of chronic pain, although they're often like woven together and interconnected. You know, finding them other multidisciplinary care is really hard, like finding them a pelvic floor therapist in town who like understands. So I mean I think that's just like some of the challenges that a lot of patients that I see face for sure.

Speaker 1:

Absolutely. I mean, I feel like all of us do at one time or another right Like I don't really know an endometriosis patient that hasn't experienced roadblocks in care and in support. And I think what's interesting is, you brought up a really interesting point about the support people piece and I think it can kind of go usually two ways you either have really good, strong support people or you have the support people that kind of perpetuate what you're already feeling in the medical system. So when you're dealing with a patient that has lack of support, how do you manage that? How do you approach that with those patients? Because that's really hard.

Speaker 2:

It's really. It's really really challenging and, like you said, especially because a lot of patients struggle to find providers who really understand what's going on. So often patients will go to providers and their symptoms will get dismissed or they'll get, you know, misdiagnosed and then they'll they've been gaslit, they. You know all of these things sort of like happen and the same thing is, you know, happening like within their family. You know it's interesting, like we've learned that endometriosis has a genetic nature and so if you have like a mom or sister, aunt or a family member that has endometriosis, like you're more likely to have it. But what's so fascinating what I found too, that can be generational as well is the ideas behind like menstruation, the ideas behind having chronic pain and those sort of like beliefs on how to treat it or how to address it or how you get empathy for it or comforted for it are also passed down.

Speaker 2:

So often, you know parents were dismissed for their puberty and they were telling, being told, oh, just suck it up or you just have to like get over it or your stress that's causing it, all these things. And then you know, when they're teen or even like grown adult, like child, is dealing with it. They are saying the same things, you know, like, oh, you just have to suck it up and, you know, just get out of bed like, do what you have to do, which then can make patients feel so isolated when they don't have someone in their life who really understands or at least provides empathy, you know. And then often patients will internalize that voice so they'll be like really hard on themselves and say the same things to themselves and blame themselves because that is what they've grown up hearing. And that's something in therapy that I work with patients to sort of unravel that internal voice and make it filled with a lot more empathy and grace and love.

Speaker 1:

Yeah, when you're working with those that maybe live within an underprivileged community, how do you help them navigate that with the support? Because I know in talking to other people about this very thing, it's hard for certain communities to be able to reach out or find a way to support their loved ones because they themselves don't believe in the medical system or they've gone through trauma of their own and they kind of back away from supporting in effort to protect themselves. You know, I think that that tends to be a really real outcome for some people who've been through that medical trauma. How do you help people navigate through that?

Speaker 2:

I think that's really hard in that sort of. There's a lot of talk about intergenerational trauma like that can be passed along and I feel like Lauren Cornegay from End of Black speaks about this so beautifully and often she talks about. One community that struggles is the African American community due to racism, right, systemic racism in the medical industrial complex, as well as racial bias with providers. You know they are more likely to be dismissed, like for their pain. They are more likely to be misdiagnosed. They're more likely to be undertreated for pain. Lawrence talked about how often in certain neighborhoods this goes for you know, even like rural neighborhoods too, I've worked with rural patients that the healthcare access available is not equipped to treat endometriosis patients Like there aren't the supports that are needed, so patients don't often have that access to care and then, because of the trauma that a lot of patients have experienced, they do not trust. You know medicine in a lot of different ways.

Speaker 2:

So I think working with patients and finding providers well first of all like finding their people right, like their. You know, endoqueer has a private Facebook group. Les Henderson started endoqueer. They have done a phenomenal job being a leader in the community, so they have a private Facebook group. So you know directing, you know, trans patients to the EndoQueer group where they could find other folks who need care that is culturally appropriate and sensitive, and you know, sending them to Lauren's private Facebook group, also her conferences.

Speaker 2:

So I think, like finding other folks in the community within the end of community that you can relate to and like bond with and see yourself in is really important. And then also finding providers who you know give culturally competent care and who you know are going to have paperwork that offers access to all pronouns right, that you know are able to sort of hold space and validate any patient who comes through their door. So I think like that's really important. And just for me as a provider, understanding I make sure I go to training where I equipped and educated to hold space for all sorts of folks who have endometriosis, and then really what I found is just holding space, believing people, believing their story, believing their pain, sending them for resources that are appropriate can help lower anxiety and lower depression so much. Even within that first session it could be so helpful.

Speaker 1:

Absolutely. I think all of us want to feel that sense of validation and when you have people that often get invalidated within society norms, it becomes even more challenging. And I want to come back to the support piece in just a second for the community aspect of it. But I want to camp on this because I think it's important. How do you help support people who are supporting chronically ill people? Because this is a whole ball of wax that I think that we often overlook in the endometriosis community. We can look at the endometriosis patient, but the support people are going through it. I mean, I don't know those who are wanting to support so much this person that aren't themselves needing the support. How do you walk families through this? How do you walk the support people through getting support for themselves while also supporting the chronically ill person?

Speaker 2:

Yes, a lot of what I do is provide education, right. So I am sending out a link to Shannon's Below the Belt documentary and I'm saying, like, watch this so you can learn more. I have done so many sessions with parents, like, invite your parents in, like we'll do, we'll all do a telehealth session and this way they could ask questions and get more information and get more resources. Also, you know, sharing books. I have like a list of books on my website that I know would help. I encourage them to join, like Nancy's, nook or other Facebook groups. I think you know, just like with patients themselves, validate how hard this is and that it is stressful and that you're probably feeling like you're not in control and you're probably feeling helpless and that is how your loved one with the disease is feeling.

Speaker 2:

So, like validating that, educating them, like I said, by giving them a lot of resources, and then also sort of like challenging them to think about their own anxiety. How does feeling helpless, does it trigger your anxiety? And then what does that look like? Does it make you feel irritable? Does it make you feel angry? Do you get short? Do you disconnect?

Speaker 2:

And sort of helping them be aware of when they sort of like this part of their brain, the emotional part of their brain, gets triggered. How are they showing up, like, what is their fight flight freeze response? And trying to be mindful of that, because often that response isn't helpful to the patient, right, and it doesn't help the patient feel regulated. So just sort of also giving them some awareness about like, how are you feeling Like and how are you showing up for the patient? And is it helpful, like, is it kind If you give a suggestion, is it a helpful suggestion? Is it a kind suggestion? Did the patient ask for a suggestion? So just sort of like going through all those things and just recognizing like this is really hard and it's not going to be solved within a day. And you know, many endo patients also have other chronic illnesses too. So you know, just to like give that awareness as well.

Speaker 1:

Absolutely, I think, one of the things that my husband has pointed out to me in discussion like we have talked about this on the podcast before, but we've talked about the need for community, even for the support people, and he didn't recognize that he was walking through some of this or that he bottled certain things up or that this was common amongst those supporting chronically ill people, and so when he started having these conversations he was like it actually created a community for me and it validated what I was going through and it really helped me walk through it and see it very differently. The podcast hasn't aired yet the one that he recorded with a couple others, but they talked about this. They talked about what it looks like from a husband's perspective to support a spouse that has been going through a chronic illness, an endometriosis, and then what it looks like to be a dad or a potential dad, or to have a desire to be a dad, but are struggling with infertility issues and just going through all their emotions that they had and all the things that they've bottled up, because they are the ones that feel like they have to be the strength behind the people they're supporting. And what he came back with was. I needed that more than I realized and it allowed him to release some of the pain and the frustration that he has felt over the years, because he acknowledged it and I think that a lot of support people forget to acknowledge their pain and forget to acknowledge or choose not to acknowledge their struggles and their anxieties and their depressions and supporting these people that are really going through it, because they make their situation less than what the other person's going through.

Speaker 1:

Well, I have nothing to complain about because my loved one is going through this and they can't get out of bed. But really you have a lot to complain about too. Not to complain, but you have a lot to worry about because you're seeing this happen and there isn't anything you can do and the trauma of that on the support people is intense. And then you get the doctor situation on top of that. You know being dismissed and not finding a good doctor or feeling hopeless and for those who are fixers, you really struggle with this.

Speaker 1:

And so it's a really hard balance and that's why I want to bring it back to the community, because as much as we with endometriosis need community, those who are the support people of chronically ill people need community.

Speaker 2:

Yes, for sure. I think just as patients feel isolated, the support people also feel incredibly isolated because society does a really good job in sort of having awareness around other diseases and illnesses. Like you know, if your partner has cancer it's really horrible. But I feel like then the community like for example, recently someone in my neighborhood was diagnosed with like a terrible cancer and the neighborhood, everyone like came together, everyone's supporting the family, even for things like the flu. Folks in the community know to drop off soup, they know to leave it at the doorstep like can I go food shopping for you?

Speaker 2:

But a lot of things with endometriosis and infertility or pregnancy loss, folks don't know what endometriosis is.

Speaker 2:

A lot of the times they don't know how to help and often the person not only the patient but the support people going through it there isn't that sort of rallying that like automatically happens, like for some other things, or that understanding of needs.

Speaker 2:

So it absolutely can make a partner feel incredibly isolated and I think anytime they can reach out, as Sally Sorrell with the Endometriosis Summit I think it's still on their YouTube page they have something called like how to support a loved one and we interviewed it was Les Henderson and their partner.

Speaker 2:

It was like a mom and a daughter and I think it was like another patient and her husband, like it was a group of people and we sort of interviewed them all and it's a great resource for you know partners or loved ones out there to sort of listen so that they don't feel alone and they don't feel so isolated. And I wish you know a lot of my patients. I was like what if, like, your family had gone to therapy to understand this better, to be able to support you better, like how much better would you feel? And often it's a lot better. You know, like having that belief and that support and that foundation can really be life changing for a lot of patients who it's just like another obstacle if family members don't know how to be present or be supportive.

Speaker 1:

I also think it would be helpful for those who know that they are absolutely supported but feel the guilt of it, because, I mean, I know for myself, I often feel guilty for the strain, or perceived strain, on my family and I think that it would be so helpful for us to sit down and talk through that. And I know for my husband and I, when we sat down and had that conversation, it was very enlightening to me and the amount of guilt that I was holding on to wasn't necessary. You know, it wasn't something that he wanted to put on me and I think that if you sit down and have those conversations, I think there's something to be said about how it impacts your overall health too right, so that would be something that I would encourage anyone to do, but just to be able to open up that conversation, if you have the ability to, because there's so much healing to take place in that.

Speaker 2:

Absolutely Often patients feel guilty and guilt tends to be also something else that can be passed down from generation to generation for sure, like a culture of guilt, also like a lot of self blame.

Speaker 2:

I feel like endometriosis patients, myself included, are some of the people who are like the most hard on themselves, and often patients would give others the world right Like and not think twice about it right, except like when they're in need, that guilt does like arise. So in therapy that's absolutely something that I work on with folks. And then also like replacing guilt with gratitude, because if you think about it, if, like your husband's doing these things for you and you feel guilty, like then he feels guilty or you know, then, like both people start feeling bad. But if you could sort of replace the guilt with just gratitude, then that feels good for you to give gratitude and that probably feels better for him to receive it. You know, and then it just like is such a more healthy exchange of energy. You know, it's definitely something that can be transformed and also something that has been ingrained with us probably since we were younger, that feeling of guilt.

Speaker 1:

Absolutely. I agree with that. Why is that so second nature?

Speaker 2:

I like, come from an Irish Catholic background, so I know where my guilt is. It's probably a part of my culture, as it is a part of other cultures, but yeah, but it can be, it can be transformed, for sure.

Speaker 1:

Absolutely, and it can be healed. I think that there is space for that and, as a support person, you have a daughter and we don't have to talk a lot about this, but you are a support person. What are some ways that you've navigated yourself walking through that?

Speaker 2:

Yes, I absolutely encourage parents, as I, like I, have now experienced firsthand which is a nightmare, I think, for every endometriosis patient. Their nightmare is that this is something that they pass on to their children, and just that in of itself is really difficult, right, it's a worst case scenario it feels like and you know, I think what I tried to do, what I encourage parents to do, is to again, like, be active in therapy yourself, talk about all of their big emotions that come with parenting a child with endometriosis. Like when you have gone through it, we hold a lot of trauma, a lot of anxiety, a lot of unpleasant thoughts, obviously, about endometriosis. Some of us are still battling chronic pain or adenomyosis or other chronic issues, while now also trying to take care of a child who has these similar things.

Speaker 2:

So, I think for a parent to be in therapy and talk about how, like, wow, this is scary, wow, this is really sad, wow, like I'm grieving a lot, like that, this is going on, wow, I am feeling really triggered by all of this so that when you're dealing with your child, you can be calm, you can be regulated, you can be supportive, you can be grounded, you can just sort of be like the anchor that they need to get through this really difficult process.

Speaker 2:

You know, be mindful not to pass on any anxiety, like whether it's missing school, whether it's are you going to get your assignments in, whether it's missing practice. Be clear that your mission is I need to be 100% supportive and understanding, not make them feel bad for feeling sick. If you were growing up with you know like, oh, just go to school and you'll feel better. It's like no way you're feeling really sick right now. So, yeah, stay home, I will fight for you, like I will send notes to the principal. So I think really just staying regulated is incredibly difficult and but also like crucial to helping your team navigate it.

Speaker 1:

Absolutely. I mean that's good for me to know, cause I have two young girls and the likelihood of them having it it's increased Right. And so I just recently went through the puberty talk with my oldest, and a lot of this puberty talk entailed endometriosis and empowering her to understand and have the knowledge, and I think, as a parent, that will potentially not a guarantee walk through this. I wanted to prepare her the best I could. I wanted to prepare her with knowing that I was going to support her and advocate for her the best I absolutely could For her.

Speaker 1:

It was interesting because I, you know, I talked about this all day long. We'd made a period pack for her, I'd shown her how to use pads. I, you know, reinforced that this is nothing to be ashamed of, this is nothing that you need to be fearful of, but that finding myself and ultimately my neighbor she was talking to her about it too but finding those safe people to talk about what you're going through is so important. And opening up that dialogue and opening up that conversation to something beyond that moment, I don't know I think there's something freeing as a person that will potentially have to support a child. There's something freeing about opening that up and being on the same page, and I feel like I am preparing her the best I can without creating fear. That's huge right. We don't need any more fear, but she went to bed that night and she goes. Mom, thanks so much for helping me prepare for this.

Speaker 2:

And.

Speaker 1:

I was like stop it, stop that right now. But it does make an impact, even for me, just walking through my journey and helping others do the same. But when it's a family member, it's totally different. I don't know if you've ever experienced that where you're like, just information is power and equipping you is so freeing.

Speaker 2:

Information is power and it's again like such a generational shift. Whereas, you know, I was going through infertility and my mom was like I think you just want it too badly, like why do you have to look for problems? Like things will just work out themselves. And I'm like why do you have to look for problems? Like things will just work out themselves. And I'm like I'm not looking for problems, I'm having problems and but it's just, it's a whole. We have two completely different ways of tackling you know medical issues, two completely different ways, and there is a culture of secrecy, a culture of stigma, a culture of shame that I didn't really want any part of, because of someone who often has felt anxious.

Speaker 2:

Throughout my like journey with endometriosis and infertility and pregnancy loss, what I found most empowering was education.

Speaker 2:

You know, and you know folks may be like why are you telling your daughter about this so young?

Speaker 2:

Like at different times, we've always been open and age appropriate ways of you know infertility, like how she was conceived, about endometriosis, about you know our struggles, like to have her and then why she doesn't have any siblings, right, like because of our continued struggles.

Speaker 2:

And then also being open about, like my symptoms and my surgery, but none of it scared her. You know, she it was all because I was very calm and, like, matter of fact, when talking about it and just again, like I think it's great like educating them early about their body, looking out for different symptoms, you know, like painful periods are not normal, stomach issues are not normal, pain with ovulation is not normal, you know, and so it wasn't. When she had her first painful period, it wasn't like, oh goodness, like you have endometriosis. It was more of like, okay, you know, let's keep an eye on it. And you know, let's see, keep listening to your body, oh, rest during this time, and like, oh, it could be this. You know, I'm here to support you, I'm here to listen, so that it sort of, you know, unfolded in a way that wasn't scary, in a way that she was informed, which I think is really important.

Speaker 1:

Absolutely. I mean, I couldn't agree with that more. I think that's one of the things that I'm really striving for with my girls. I'm making poster children out of my children for endometriosis advocacy. Because we were talking about this and I said, lily, I said you may not have endometriosis and I'm going to be so excited if you don't. I told her I'm like, you may not, you may be just fine, I'm like, but maybe your friends will and your friends are missing school because of their period or your friends are asking for pads or tampons all the time and you will have the ability to say have you ever considered endometriosis? There's some signs, here's some symptoms of how it most commonly presents.

Speaker 1:

But we went over the whole thing and she's sitting there wide-eyed, mama's a lot, but I did it as much age-appropriate language as I can, you know. But it was interesting because she was like I think it's important we talk about this mom. She goes why do people not want to talk about it? And I said, well, I think it's a generational thing, I think there's a lot to it that people maybe feel uncomfortable talking about. She's like well, I'm gonna, I'm going to talk about it. I said, okay, do that.

Speaker 1:

But I think the other part of that, too, is that we've talked a little bit about finding a place to talk about it and I think community and support communities and support groups have so much value and myself being part of a support group and starting a nonprofit with others, it has made a massive difference in how I navigate endometriosis, how I navigate my post-excision endometriosis, which is a whole nother ball of wax, how I navigate having hysterectomy and going through the hormone replacement therapy and everything that comes along with that. It has given me some of my best friends and I think because there's that group that validates where you've been and where you're at, understands it and doesn't hold you to a standard that is unattainable in care and the way that you should function, and if you're tired one day, it's okay that you're tired, it's okay.

Speaker 1:

Can you speak to what you've seen in patients that are in support groups, who are in a community to help support them in their journey?

Speaker 2:

Oh, it makes a huge I mean it makes a huge difference. I run currently I'm running two free support groups a month, like I have one group that I just run on my own that there are folks all over the country who are in. And then I just teamed up with Lhasa the Lhasa app Margaret, who's awesome, and so I'm doing a Wednesday evening monthly support group through that. That's also free for patients. My first support group I had, you know, I've had my appendix out. I had to have my gallbladder out and still hadn't had like a endo diagnosis. My RE did like a really quick surgery that left the majority of the disease. You know, and I know a lot of patients can understand that. And I still was feeling sicker and sicker, and sicker and I just wasn't well. So I started Googling and I found Jill from Endo Warriors in New York City. Like had started a support group, one of the original like Endo Warriors meetings, and it was in her apartment in New York City. And like I didn't know Jill, I don't usually show up to apartments in New York City. Like a lifelong New Yorker, that's not usually something you do is like show up to an apartment you found on the internet and knock on the door, but I was so desperate for support and guidance and resources that I'm like all right, here we go. Like this is against my better judgment, but we're gonna. We're gonna do this. And I showed up in Jill's apartment. She opened the door and April Christina, who is an amazing advocate and has been an advocate she's on Instagram and really has done so many things for his community she showed up and it was the three of us in the apartment and they were the first people I'd ever met with endometriosis, the first people I connected with, and it was incredible like to sit with them and to hear about their gastrointestinal issues, about their chronic fatigue, about how they get up in the night to like urinate as well. We shared our stories and our pain and it changed my life. And then from then on, I started a group, like in Westchester.

Speaker 2:

I've lived in Yonkers and so for myself it made all the difference being connected and then the support groups I've ran over the years, especially now I find, post COVID too, that people are even more isolated. So endometriosis patients, who are isolated in general, are even more isolated. A lot of them also, if they're lucky, have worked from home jobs, where they're not really in an office, like connecting with others, connecting with people. So I feel like the loneliness that patients face is even more pronounced, somehow, than before. So having them connect with others has been life changing, and just being able to sit in a group and not have people invalidate you, not have people like dismiss you, actually have people say, oh goodness, I know exactly what you're saying Just really can cut the edge off of the isolation and the loneliness and just make you feel connected In your experience.

Speaker 1:

What's the impact of isolation on chronically ill people? I can only imagine it's not only a physical impact, but emotional, mental impact. What's been your experience with that?

Speaker 2:

Yeah, I mean, I think it absolutely can increase anxiety because, especially for folks who are living alone, it's like what if I pass out? What if I'm too sick to get to a doctor? So I think there's an increase in anxiety that can happen. And then I also think the lack of social connection can also increase depression, and to feel like you're all alone in the world absolutely can make a patient feel more depressed.

Speaker 1:

Yeah, I've experienced that as well, in moments where, in really the beginning stages of my journey, I felt very isolated, and part of that was because I went to a provider who made it sound like it was a very rare thing to have endometriosis. Behold, it is not. We all know that, right, we know it is not rare, but that was the feeling that I was given and it felt very isolating in those moments of like. I have this rare disease that no one understands. There's not research behind it which is valid, but it's very isolating when someone puts it like that.

Speaker 1:

I was recently married and then had a miscarriage and then a kidney stone which led to my diagnosis. And when you are going through a lot of different changes in life and then you're handed another diagnosis or handed something else you have to navigate. The isolation plays a part in how I feel, because I think it exacerbated this feeling of sickness in my body and it was harder for me to cope, which then turned into a cycle of depression. But the depression manifested in my inner thoughts, it manifested in the quiet moments and the isolation would just perpetuate that even more. And so, like when we're talking about support, and we're talking about support meetings. I think it's important to find a group that makes you feel less isolated and I can guarantee if you find an endometriosis support group that's legitimately there to support you, you won't feel isolated the instant you walk in.

Speaker 2:

I'm so sorry for your loss and when I heard you speaking about your pregnancy loss and then kidney stone and then diagnosis like that is your pregnancy loss and then kidney stone, and then diagnosis like that is major trauma and like like so many things right there, like a lot of pain and there's so much that we as endometriosis patients have to grieve. There's so much grieving that goes on on so many different levels and doing that in community can be helpful. And then also those inner repetitive thoughts and that often is anxiety right Like those sort of, like you know, repetitive thoughts that keep coming, like is this ever going to get better? Am I ever going to feel better? Am I ever going to be able to feel normal again? Am I going to be able to have a baby? What is my life going to look like?

Speaker 2:

You know I'm working with folks who had to change jobs because they just can't work, you know, on their feet. So there's just so many things that endopatients have to adapt to and part of the adapting process is grieving that you have to adapt in the first place, which is really difficult, and there are. You know Peach Corpse is doing like a great job with support groups and the Endometriosis Coalition has the monthly support group.

Speaker 1:

There are a lot of like really great groups out there right now and a lot of different opportunities for folks to get support Absolutely, and I do think that it's important that, when you're finding a support group, that it is founded and based in facts and good, informative information, because I think that's something that could be very misleading as well, as, if you don't have a support group that has a good foundation, it could lead to further trauma.

Speaker 2:

Oh yes, oh yes, for sure. I was just working with a patient. She found an online support group for she had a pregnancy loss that was pretty advanced, which was devastating, and someone in the group told her it was her fault that it happened, but which talking about like adding to trauma, and you know the feelings of guilt she was already feeling which there is no reason right, like it just happened, so yeah, and and also like bad information is out there too, so it can be a nightmare if you stumble upon like a wrong group, absolutely.

Speaker 1:

And I do think part of that, too, that is helpful is finding purpose within the support groups. Part of being in a community is doing things together, and so if you're not sure where your advocacy lies, I think it's important to understand that we need you. If you don't want to be the face of advocacy, we're still going to need you to help, support us and lift us up, and that is sometimes the greatest support you can give, and some of the best advocacy are supporting those who maybe have a face of advocacy. You know you're putting yourself out there. It's hard when you're in support groups sometimes to do it all because you're passionate about it. So I encourage people to step alongside those who are doing these groups and become part of that and belong in that group, because that is healing to be, long.

Speaker 1:

For sure you know and be part of something.

Speaker 2:

Absolutely. We talk about in our groups that. You know there are many ways to advocate Like. A lot of us are really in crisis.

Speaker 2:

I really feel like when you are in tremendous amount of pain with endometriosis, if you are feeling really unwell like and struggling to get care, you are 100% in crisis. Same way, if you're going through infertility and pregnancy loss, you are 100% in crisis. And I think what's really challenging is, with something like endometriosis, you don't know how long you're going to be in crisis for right Like. You don't know. Like in that it's exhausting and it's but you can feel empowered, connecting with others right and advocating in your own way.

Speaker 2:

So we talk about like even if you are looking on your local Facebook group, like Wilmington, I have one patient who's so wonderful and part of her advocacy is whenever endometri up in our city's Facebook group, she like puts really good resources and directs folks. You know advocacy is like if you have a friend who's having issues, you know sharing like what resources have helped you, or like it's joining groups or it's connecting with your local nonprofit and I agree with you about not reinventing the wheel nonprofit. And I agree with you about not reinventing the wheel. I feel like someone who's really mentored me and who is wonderful. Um, there would own from you know the center of endometriosis care. She's just amazing.

Speaker 2:

I feel like you can't, you can't even talk about advocacy, really like without talking about her, and she's taught me everything I know she taught me that too. Like, don't don't start something new if it already exists. Don't reinvent the wheel. There's power in numbers and you know you know support folks who are already doing great work If you don't have something new to bring to the table, which is really, I think, such an important point that you know you brought up as well.

Speaker 1:

Yeah, it's been really impactful for a lot of people who feel like they don't have the time to, or the capability or the health to be able to give as much as they want. But doing a little bit makes them feel better too. They feel like they're part of something and that's healing. And it's so good for depression and anxiety to feel like you have purpose, and I don't know.

Speaker 1:

I think maybe that should be our talking point is finding the purpose in our pain and and there is purpose in this pain, even if we don't understand it and we can be mad at it. And, like you said, we can grieve what we've gone through, what we're going through, what we have potentially coming our way in the future. And I think grieving is a big part of that. But purpose is another part of that. And and putting our pain into purpose, that's how I function. Not everyone's probably going to do that and not everyone's comfortable with that, but I do find that there's healing when I do that.

Speaker 2:

Yeah, I always say too which I think is the same vibe or feeling is like you know there's so many things that endometriosis takes away like and there are so many things out of our control. So I found that advocacy has made me take some of my power back. Endometriosis, it feels sometimes it like steals all of your power. So I found that advocacy and being a part of the community trying to help in whatever way I can, gives me some of my power back, makes me feel more in control of things you know that really I don't have control over. So I think that's sort of really why I first started doing advocacy work in the infertility community before I really understood endometriosis and you know how it impacted me fully. I did a lot of work with resolve and infertility is another thing that makes you feel like you have no power, like you have no control, so that it really was very empowering to and healing to take control of trying to make things better for sure.

Speaker 1:

Yeah, oh, that's so good. I feel like we could probably talk for hours because there's so much to cover when it comes to mental health and when it comes to advocacy, endometriosis, you name it. We could talk for hours because that's what us, as endometriosis advocates and patients, do. But you are such a wealth of knowledge and if someone needs support and help and they've connected with you, is there a way that they can connect with you outside of this platform?

Speaker 2:

Yeah, absolutely. My website is wwwkcbernacom and on my website there's a ton of my favorite resources. I have to update it because I haven't updated it in like two years, maybe three years, maybe longer, but there are definitely a bunch of resources on there that are free that patients you know if they want to sort of understand more about endometriosis. I also did sort of like a video this was now goodness, like six, seven years ago now on like infertile endometriosis, infertility and impact on mental health. So again, it's free. It's on YouTube. Folks can watch it. There is a husband on there who talks about it as well. So reach me through my website or you know my email address or I'm on Instagram. I'm endo social worker.

Speaker 1:

Perfect. What are some nuggets of wisdom that have really helped carry you through this journey that could help impact other people's journey?

Speaker 2:

Yeah, I mean I just want to validate the pain that folks are feeling. I want to validate the sadness and the grief that they're feeling and that validate this is incredibly, incredibly difficult. Endometriosis is a really challenging disease that often comes with other comorbidities, like in other chronic illnesses, and that it's really hard. And so I want to validate that and also say that going to see a mental health provider can absolutely help with the anxiety and depression. Like, obviously, there are no quick fixes to endometriosis or the chronic illnesses that come along with it, but talking to a mental health provider can absolutely help lift some of the anxiety and depression that's going on. Connecting with others in the community who understand what you're going through can be so validating and reassuring and that I see and feel like other people are going through and know how difficult it is.

Speaker 1:

Yeah, oh, that's so encouraging to hear and if you're really struggling, there are resources out there, there's helplines out there. I want to encourage anyone that's walking through this journey to not do it alone, because it's a very isolating journey to be on and, like we said before, isolation breeds depression and anxiety a lot of times. So I encourage you to just reach out to someone.

Speaker 2:

Yes, and there's importantly, like and if you're, if you are having suicidal thoughts which the BBC did a survey and I think it was more than half like of endometriosis patients that they surveyed have had those thoughts before that there is a suicide and crisis lifeline. You know you can go and like call that and then there'll be like someone or you could text like if you're feeling extremely depressed. You know it's 988 lifelineorg. You could go there and get immediate help and support If that's something like that you're struggling with.

Speaker 1:

Yeah, that's excellent. So thank you for bringing that to the table. Thank you, casey, for coming and joining me today and just sharing your wisdom and your compassion and your passion for endometriosis patients and the support people. I feel so refreshed after talking to you and validated and part of my journey and what many people go through. So thank you for taking the time, thank you for having the heart to do this and put yourself out there and work tirelessly on the advocacy front, because we need more people like you to help lift us up. So thank you.

Speaker 2:

Oh, that's so kind. Thank you so much again for having me. It was such an honor to chat with you and thank you for all you do to make our community better.

Speaker 1:

Absolutely. I'm so happy to do it Well, until next time. Everyone continue advocating for you and for those that you love.