Endo Year Reflection: #4

Welcome to EndoBattery, where I share my journey with endometriosis and chronic illness, while learning and growing along the way. This podcast is not a substitute for medical advice, but a supportive space to provide community and valuable information so you never have to face this journey alone. We embrace a range of perspectives that may not always align with our own. Believing that open dialogue helps us grow and gain new tools always align with our own. Believing that open dialogue helps us grow and gain new tools. Join me as I share stories of strength, resilience and hope, from personal experiences to expert insights. I'm your host, alana, and this is IndoBattery charging our lives when endometriosis drains us. Welcome back to IndoBattery. Grab your favorite cup of coffee, tea or whatever brings you comfort, and join me at the table as we take a moment to recharge together. Today we're diving into our Indoor Year Reflection series, a journey that will fill your speakers multiple times a week throughout the month of December in bite-sized pieces. This series is all about looking back, reflecting on the stories that moved us, the insights that opened our eyes and the moments that brought us hope, inspiration and empowerment to our community. Whether it's your first time tuning in or you've been with us all year. I'm so glad you're here to share in this space. I hope you're enjoying this reflection series as much as I am, so let's dive into today's episode and continue finding strength together.

Speaker 1:
1:26

Looking back at my time at the table with Natalie in episodes 68 and 69, I'm struck by how deeply her story resonated, not just with me, but with so many of you. Her story mirrored so many of ours the doubt in our pain, the way we gaslight ourselves into thinking maybe it's not that bad. The struggles to follow through with our education or career goals because of relentless pain and, of course, the complicated relationship we have with insurance. We're so reliant on it for our care, yet often left out in the cold when the treatments we need aren't covered. This wasn't just an episode. It was a mirror held up to so many of us. You could hear Natalie's vulnerability as she took us back through her story. The pain she carried, yes, but also the validation and being able to name it and share it.

Speaker 3:
2:17

I just couldn't get out of bed in the morning and I thought that it was like discipline and something's wrong with me and I don't care. Blah, I don't care, but it was none of that, it was. Nobody tells you, even when you get diagnosed, that fatigue is a huge symptom of endometriosis.

Speaker 1:
2:31

Yes.

Speaker 3:
2:32

So I moved out when I was 18. And I lost my health insurance because at the time there was no Affordable Care Act, so I was insurance lists. It was also. I started college in 2007. And you also. I started college in 2007.

Speaker 3:
2:46

And you know, the recession came right after, so it's not like I could get a job that would give me benefits and also I just I was a kid right, I didn't have the skillset to get like a real job. Quote unquote quotation marks. All jobs are real jobs and college was rough. College was rough because at that time, just period week was the worst. That was the worst week of the month, and then the week after recovering from the pain was pretty awful and I was just relentless. So when I was 20 years old, when I should have been finishing college, which I didn't, I didn't graduate until I was 24 because I couldn't afford some semesters. I was on my own. I was paying it for myself. I started experiencing pain all the time and then the Affordable Care Act kicked in and I was able to get back on my mom's insurance.

Speaker 1:
3:34

As Natalie shared her deeply personal story of being torn between two powerful forces the weight of familial expectations and the reality of debilitating pain. For Natalie, making her family proud wasn't just a goal. It was deeply tied to her identity and sense of self-worth. Yet her body, overwhelmed by the unrelenting pain of endometriosis, often refused to let her push through. Her vulnerability highlighted the invisible struggles many endure, not just physical but emotional and mental battles that this disease amplifies in every corner of our lives. Natalie's voice resonated especially with those in the Latina community who face the unique challenges of balancing cultural expectations with the isolating reality of chronic illness. But what truly stood out was her message of hope. But what truly stood out was her message of hope that love, both for oneself and for others, surpasses every expectation. Natalie reminded us that, even in the face of overwhelming hardship, we are not alone and we are so much more than what this disease tries to take from us.

Speaker 3:
4:38

I was the first one in my family to go to college. I was the first one to navigate the college system to begin with and there was all this pressure on me because I was the first one to navigate the college system to begin with and there was all this pressure on me because I was the first right and I was worthy. As long as I was in school and working, as long as my body was producing something, I was worthy and I was living out everybody's dreams of why they hid underneath me crates and a truck and crossed the border, of why my grandmother got student visas for her daughters to come here, right, but none of them went to college and none of them had the opportunity. None of them spoke English, but Natalie had the pressure of going to school and becoming something right, doing something, bringing the family honor. That's what people love.

Speaker 3:
5:22

That movie, I think it's called the Encanto from Disney. Yes, it gives me like instant PTSD Because that's what you know, it's cliche. But I was like, oh God, I was like you know, this is my life. It's hard. It's hard to be the first and I'm the oldest of 24 cousins.

Speaker 3:
5:44

So I'm not only an example to my sister, but I'm an example to 23 other kids. It was a nightmare, so that's all I cared about. I didn't care about me hurting because my mother worked. She was a single mom. She worked 70 hour shifts a week. I never heard a complaint about pain or being tired. She came home, cooked dinner, made sure we had food If she was going to work on the weekends and clean the house and did what she had to do. I never heard her complain. My grandmother works standing at a factory, also 60 to 70 hours a week making sweaters. I never heard her complain.

Speaker 3:
6:17

My father used his body to work Still to this day. He's a busboy at a restaurant and is on his feet all day, so don't hear him complain about it. And so for me to complain about pain to my family was ridiculous. Like how, how dare I, when I have all this privilege and all this opportunity that they didn't have? So I didn't really talk too much about how the pain was affecting me, and I didn't really ever want to talk about it because I didn't want to be seen as weak, because if I can't tolerate my pain, then I'm weak of character, I'm weak as a person and I'm not worth anything. My parents have been through so much worse than I. How dare I? You know, that's how I felt, and so I wanted an answer to the pain, just so that I could continue being worthy.

Speaker 1:
7:04

Much like Natalie's powerful testimony, arlie's story in episode 87 brings to light the staggering challenges those with endometriosis face, challenges rooted in misconceptions, mistreatments and the pervasive lack of understanding within the medical community. As I listened back to Arlie recount her journey, I couldn't help but resonate with her experiences. Like many of us, she encountered well-being but misinformed doctors whose lack of specialized knowledge led her to years of unanswered questions. Her story is a stark reminder of the importance of finding true endometriosis specialists. Arlie shared how her path to diagnosis took an unimaginable 24 years and two surgeries Let that sink in Two decades of living with pain, uncertainty and dismissal before she finally found answers. It's infuriating and heartbreaking, but unfortunately it's not unique. Her courage and opening up about her experience underscores just how critical it is to advocate for ourselves and seek out experts who understand the nuances of this disease. Arlie's story is a testament to the resilience of our community and the need for systemic change so that no one else has to endure what she did to finally get the care they deserve.

Speaker 2:
8:26

It took me 24 years to be properly diagnosed with endometriosis. And that was after having two surgeries, one for what was suspected cancer and then two was a hysterectomy. And my pain and issues actually became worse after the hysterectomy because I did not see a specialist. I really didn't know very much about the disease at all. It had been mentioned to me in my early 20s. I just remember somebody saying and it may have been my mom, because she also had endometriosis, but after she had a hysterectomy she never had any pain. So I think somebody said to me along the way you know, you might be, you might have trouble getting pregnant, but that was really the only thing that was ever mentioned. And then I remember being pregnant and literally in labor, about to push, and the nurse said to me oh well, now you'll never. You know, you don't have to worry about endometriosis because you had a baby. So clearly that's not the case. And it wasn't the case.

Speaker 2:
9:45

And my issues, like I said, after I had a hysterectomy with an oncology gynecologist, it got worse. It got worse because it was burned out and it wasn't excised. I started developing other sort of autoimmune issues and my inflammation was really high. I had rashes on my face. I had like burning in my eyes constantly, obviously like the abdominal dissension looked like six months pregnant on a regular basis, to the point where it didn't matter anymore about what I ate. You know, if I restricted pasta or rice or bread or you know carbs, that would help. And then it it was like, well, I just ate a piece of, or you know, carbs that would help.

Speaker 2:
10:31

And then it it was like well, I just ate a piece of chicken, you know, or I just had a tomato. I removed all like nightshades and inflammatory foods. I did learn a lot about diet and how that can worsen symptoms and contribute to bowel problems, but I knew that that was not like, that wasn't going to fix my issues. But it did definitely help. But it was so bad to the point where I did go see a specialist and I had stage four deep infiltrating endo with frozen pelvis.

Speaker 1:
11:07

So many of us can resonate with this story and so many of us have been in similar shoes as she has, but I hope, at the end of the day, her story leaves you with more insights to how to navigate your own journey. Thank you for joining me this week walking down memory lane. If you haven't listened to these episodes yet, I encourage you to do so. Natalie and Arlie's honesty and vulnerability are reminders that, while we often feel alone in this fight, we are anything but. Stay tuned for more endo year reflections as we look back at stories and conversations that recharge us. Until next time, continue advocating for you and for those that you love.