Finding freedom through sharing your story: how speaking up liberated activist Lomaris “Lo” Diaz
In December, Sahiyo U.S. and TightLipped explored the power of sharing one’s story during our “Pain, Stigma, and Sexual Health: Healing Through Storytelling webinar. After recently chatting with one of the panelists, Grace Culqui, I had the pleasure of interviewing another participant: Lomaris “Lo” Diaz. For years, Lomaris struggled with vulvovaginal issues which caused her intense pain on both a physical and emotional level. Not even medical professionals were able to understand or sympathize with her plight, leaving Lomaris with a deep sense of isolation. In our interview, I got to learn about how sharing her story with others changed the game for Lomaris. Through talking about her experiences, she felt liberated from her pain – and indeed, it metamorphosed into a sense of purpose. What Lomaris had to say about the importance of speaking up and reaching out for support was incredibly inspiring, and I believe could be helpful for others also trying to free themselves from their own trauma and hurt – including those affected by female genital cutting (FGC). What motivated you to participate in the webinar and share your story? At the beginning of my journey with vulvovaginal pain, I felt this deep sense of loneliness, as if there wasn’t any place in the world I could truly belong to. While I wouldn’t wish for any other woman to go through something like this, the experience made me find others like me. Instantly, I experienced a freedom I had never felt before. The word “freedom” sounds so odd because, at that time, I felt like the pain owned me and there wasn’t any other way out of it— but community gave me hope. I wanted to help other women who, like me, were suffering from both physical and mental pain. After finding a community of people who understood my struggles [through my provider], something changed within me. I no longer felt ashamed about being open about my condition. Instead, I felt a sense of responsibility to share my story to find others like me and remind them that they are not alone. Looking back, what emotions or thoughts stand out the most from your experience during the webinar? During the webinar, I was reminded of the sense of isolation and discouragement I felt when I was ignored as if my concerns about my health were not valid. All the comments made by medical practitioners about my condition rushed through my mind, comments like: “It’s all in your head,” “You’re being overly dramatic,” and “Since no one can figure you out, you deserve a life alone or not to live at all.” That last comment was made as a joke to alleviate the sorrow I felt during the appointment, and to this day, I still can’t understand how someone would even joke about it. Were there specific topics brought up during the webinar that released these emotions? When Grace shared her story about her IUD anesthetic procedure, her practitioners forgot to inform her they left a large amount of gauze inside her vagina due to abnormal bleeding during her procedure. She then had to endure so much discomfort to moisten the gauze and slowly rip it out. I work as an animal anesthesiologist, and it shocks me to hear stories like this, even for my patients who can’t communicate. I thoroughly explain the process, side effects, what owners might expect, and how to prepare themselves to assist their pets better when coming home after an anesthetic procedure. Why would working with a human patient be different when they have lower standards? What message or insight do you hope readers take away from your insights about navigating sexual health challenges? For those at the beginning of their healing journey or navigating sexual health challenges, sometimes it’s all about a 50/50 roll of the dice— a gamble of sorts. Sharing could bring something that connects you to solutions or potentially hurts you, as with my community. In my situation, on a day marked by frustration and just overall exhaustion from my vaginal problem, I shared part of my story with a co-worker. She learned of another doctor familiar with conditions like mine because of her husband’s PT doctor. And that’s when my healing journey started. You see, for me, life is almost always a 50/50 gamble. Sharing can sometimes cause pain or shame, but there’s also a 50% chance it could bring answers and help. How can I limit myself to one side of the coin? I feel that if there’s a chance of experiencing hurt, there will be a moment when I will receive the help I need, and I did. I am so glad I rolled the dice again despite how painful it was in the past. Is there any additional advice or encouragement you’d like to share with individuals facing similar journeys? Every person’s journey is unique, and sharing our experiences can sometimes lead to negative emotions such as discouragement, disappointment, and hopelessness. When people don’t take the time to listen and understand, their words, actions, and advice can hurt us. But, despite these challenges, there are safe spaces and supportive communities for you. You are not alone in this. [youtube url=https://youtu.be/UHZD5UW_Fgw] If you want to hear more about Lo’s full story, be sure to watch the webinar here.
Finding safe people and protecting your peace is key, says activist Grace Culqui
By Sheena Vasani After Sahiyo U.S. and TightLipped hosted the webinar, “Pain, Stigma, and Sexual Health: Healing Through Storytelling” in December 2023, I spoke to Grace Culqui to learn more about her experiences as a webinar panelist and chronic pelvic pain survivor. During the webinar, Grace opened up for the first time in a public setting about her ten-year struggle with Vestibulodynia, Pelvic Floor Dysfunction, and Lichen Sclerosus. In our interview, we got to learn more about her process of connecting with others and sharing her story. I found her insights to be both inspiring and honest, and believe her lessons in protecting your peace and finding safe people could be helpful for others who experience pain, trauma, or harm, including those affected by female genital cutting (FGC). For Grace, it wasn’t as if she woke up one day feeling ready to share her story with the world. Rather, reaching this point was a slow process; a culmination of multiple conversations with what she calls her “safe people.” But first, she had to find them. “I learned in therapy […] that someone may not be a bad person, but they may just not be a safe person to talk to you about these types of things.” “If you’ve never shared your story before, with [safe] people you’ll get that validation and you’ll get the love that you should receive when sharing a hard story.” As a result of those conversations, she began to slowly feel safe enough to share her story with others who have gone through similar experiences. It’s in the TightLipped community where Grace found people who can empathize and truly understand. “I have always gotten validation and reassurance [from Tight Lipped]. When I joined, I felt finally I had found my community. Starting to hear other people’s stories, [I realized] that I’m not alone in what I was going through, even though I felt alone for so long.” Ultimately, that support inspired her to participate in the webinar. “When I was asked to participate [in the webinar], I immediately wanted to be a part of that,” she said. “I felt like if I could aid in helping somebody else feel the way that I felt when I’ve heard people sharing their stories, then I wanted to be a part of that […] change.” She couldn’t believe how people responded when she finally opened up for the first time in the webinar. “Once I finished speaking, the comments – the chat section – was just filled with people relating to me and thanking me for sharing – I was not expecting that at all. And I was like, oh my gosh, I’m trying not to cry on this recorded webinar.” Grace emphasizes that just because she was able to participate in the webinar, it doesn’t mean she’s no longer fearful about speaking out. “Sometimes it can seem like […] when you’re listening to somebody’s story and they’re giving this amazing advice, it [feels] like, ‘Oh, I need to get to that place.’ I feel like when it comes to things like chronic pain, it’s such a roller coaster type of experience though.” “For me, I want to find somebody who will validate and love me through my pain, which isn’t something that I’ve ever experienced before,” Grace adds. “I’m so scared for the next time I am going to have that conversation with a partner, so it’s all a learning process.” It’s her safe people that have, over time, changed how she relates to that fear and her pain in general. “I’m still young and I still don’t have it all figured out, but the biggest thing that’s really helped me is just to remind myself, “it’s okay for it to suck, it’s okay for it to be emotionally painful, and it’s okay to feel the emotions. At the same time, always give yourself that grace and protect your peace’.” She’s also learned tools and techniques that have given her strength. “[Give] yourself grace and [realize] that person’s response to something so vulnerable is not reflective of you or what you shared. That is entirely on that person to react in that way, and remind yourself that’s not a safe person to have in my life – at least in this time.” What’s more important, Grace says, is to honor where you’re at first though. If you don’t feel ready to share your story at all, you don’t have to – even if you see others doing so. “Protect yourself and protect your peace.” “Just keep implementing that positive self-talk,” she adds.“Because eventually you’re going to start telling more safe people, you’re going to start feeling more validated, and you’re going to start to believe that it’s true.” [youtube url= https://www.youtube.com/watch?v=5cnDnoQh9so] If you want to hear more about Grace’s full story, be sure to watch the webinar here.