Introduction
This interview originally appeared as an Instagram Live between Solonje and Chelsea. It has been adapted for length and clarity. The original interview can be viewed here.
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Interview
Chelsea: Solonje, thank you for joining us today to discuss this deeply personal topic, we really appreciate your openness. We're here to discuss fibroids, and also to talk about the importance of voicing our experiences, especially regarding menstrual health conditions like fibroids and endometriosis. These conversations are crucial for educating others and breaking down the stigma surrounding these issues. It's also about letting people know they're not alone in their journey. Unfortunately, there's a misconception that these conditions are rare due to the taboo surrounding menstruation, when in reality, they're very common.
Before we delve deeper, let's briefly touch on what uterine fibroids are. They're growths of muscle tissue in the uterus that are mostly found to be noncancerous. They are very prevalent in the US, where a woman's lifetime risk of developing them is estimated to be as high as 75% by the age of 50 and as high as 80% lifetime risk for Black women. We know that they vary in size from practically microscopic growth to the size of a jumbo grapefruit or bigger, which is absolutely mind-blowing. While not everyone experiences symptoms, they can significantly impact daily life for those who do. Solonje, can you share how fibroids have affected you and your journey to diagnosis?
Solonje: Thank you. Fibroids have been a significant challenge for me since I started menstruating at 14. The pain was debilitating, leading to blackouts and vomiting. Despite trying birth control and various remedies, the pain only worsened as I got older. It took about 8 to 10 years before I received a diagnosis of three small fibroids. However, the medical advice at the time was merely to wait and see. As a Black woman, navigating the healthcare system was daunting due to intersecting issues of racism and sexism.
Chelsea: So, it took years before you got a clear diagnosis. How did you cope during that time?
Solonje: It was incredibly tough. I tried different medications and remedies, but nothing seemed to work. Eventually, while in Tunisia, I experienced such intense pain that I sought medical help there. Perhaps surprisingly, the healthcare facilities were excellent and my scans were free. On the contrary, accessing healthcare in the US, especially without insurance, was a constant struggle filled with uncertainty and financial strain.
Chelsea: It sounds like a challenging journey. Can you tell us about the next steps after receiving your diagnosis?
Solonje: After discovering the size of my fibroids, I knew action was needed. However, the treatment process in the US was disheartening. From doctors not turning up to my appointments and a total lack of empathy from medical professionals, it felt like an uphill battle. The whole experience was isolating and terrifying, navigating a system that often felt indifferent to my needs.
Chelsea: Your story is truly heartbreaking. What's even more astonishing is that your experience is shared by many other women, in particular Black women. It's harrowing to hear what you've been through and to think about how different your journey could have been with the right support from the beginning. Did your doctors ever suggest a hysterectomy?
Solonje: No, a hysterectomy was never offered to me. Instead, they only presented myomectomy as an option. This involved a robotic procedure where tiny arms operated inside my abdomen to shred or remove the fibroids. Unfortunately, due to the location and number of fibroids, they couldn't remove all of them during the several-hour surgery. So even after the procedure, I still had fibroids in my body. It's been about five years since the surgery, and I'm still dealing with them to this day.
Chelsea: Solonje, your experience resonates deeply with me, especially considering my own journey with receiving an endometriosis diagnosis. It's unbelievable how many women are affected by these conditions, yet diagnosis and treatment are often delayed for years. You've already touched on your exploration of alternative medicine. Can you tell us more about how it's currently supporting you, and what advice you'd give to your younger self?
Solonje: After my diagnosis and before my surgery, I turned to acupuncture and Chinese herbs. I found relief, although it was somewhat limited due to the size of my fibroids by that point. The treatment I was given was normally for people with fibroids under 4cm, whereas some of mine were around 12cm. However, I wish I had known about these alternatives earlier. Now, I continue to explore alternative options like CBD suppositories, THC-CBD blends, and botanical drops to reduce inflammation and manage pain. Additionally, I use specific teas with CBD and THC, along with smoking, to create a holistic approach to healing. Despite still experiencing pain, this combination makes it more manageable.
I also strategically plan my schedule around my menstrual cycle. Whether it's a client event or speaking engagement, I immediately consult my tracker to determine where I'll be in my cycle. With my busy schedule, the last thing I want is to experience breakthrough bleeding in public or endure the embarrassment and pain I faced in the past. So, I prioritize knowing when my period is approaching and mentally preparing for it with self-care practices beforehand.
Chelsea: You’ve touched on something we discuss a lot at Looni, the importance of cycle tracking, recognizing that it's not always feasible for everyone but can be so helpful for managing chronic conditions and difficult menstrual cycles. It would be wonderful to get to a place where discussions around menstrual health and chronic pain are normal and open.
Solonje: Before transitioning to full-time entrepreneurship, I made sure to communicate with my managers about my menstrual cycle's impact on my workdays. I told them off the bat: “hey, when my time of the month comes, I’ll probably need to work from home or I might not be able to work depending on the severity of the pain”. And, you know, there are some people who are insensitive but it’s about advocating for yourself in all aspects of life and raising awareness about these issues in every space we occupy. It's unfortunate that we have to do this extra work, but it's necessary.
Chelsea: Absolutely. You've alluded to how your condition impacts your daily life, particularly with travel and managing public situations, can you give us a insight into the most disruptive symptoms of your fibroids?
Solonje: The intense cramping and breakthrough bleeding, along with constant urination due to pressure, are the most debilitating aspects. It's embarrassing and humiliating, especially when in public or with a partner. The isolation and lack of understanding from others add to the challenges. Managing relationships and intimacy becomes a balancing act between needing support and feeling self-conscious about the symptoms.
You want to feel sexy. My period isn't just a simple three-day event where you wear a tampon and move on. It's more akin to wearing a diaper. I need to use both a pad and a tampon, changing them every two to three hours during the first two days of my period. You don’t want anyone around, yet simultaneously crave somebody near you for love and comfort. This creates a polarizing feeling of wanting to be alone and not wanting to be alone. The isolation can be challenging, as can the lack of understanding and empathy for what you're experiencing.
In my experience, primarily with male partners, it's important not to assume they cannot sympathize just because they don't personally experience menstruation. Some do have sensitivity about the issue, having seen sisters, mothers, cousins, or caretakers go through it. They understand the pain. Therefore, we should try not to hesitate to communicate about it.
Additionally, the fear of embarrassment and the pressure on productivity make it a constant struggle.
Chelsea: Thank you for sharing your experiences and shedding light on how deeply these conditions impact various aspects of life. It's crucial to have these discussions to raise awareness and support those affected.
I'd like to revisit a point we touched on earlier. Studies have shown fibroids are three times more common in Black women in the US compared with white women, and they often come with more severe symptoms. While we're still trying to fully understand why this prevalence is higher, there are some theories being explored. For instance, there's ongoing research into the possible link between fibroids and vitamin D deficiency, as well as the impact of environmental toxins, and even the idea that dairy consumption might affect Black women differently due to dairy intolerance.
Another factor we haven't delved into yet is stress and trauma, particularly the role of high cortisol levels. So, my next question is, could you shed some light on the causes of fibroids and share your perspective on why they might disproportionately affect Black women?
Solonje: Absolutely. Firstly, it's crucial to acknowledge that we lack comprehensive research and understanding precisely because fibroids disproportionately affect Black women. There's a reluctance to invest in studying conditions that primarily affect marginalized communities. Now, as for the causes, one factor that often gets overlooked is the use of relaxers and other hair treatments containing chemicals. Many Black women are conditioned to conform to certain beauty standards, which can involve subjecting our bodies to what I believe are harmful substances from a young age.
But perhaps the most significant cause to consider is stress. Black women face an immense amount of mental, physical, and economic stressors, from systemic inequalities to workplace discrimination. The chronic stress we experience undoubtedly takes a toll on our bodies and can contribute to conditions like fibroids.
We desperately need more research into these areas, but in the meantime, we must lead with empathy and listen to patients' experiences. It's not just about treating symptoms; it's about understanding the broader context of a person's life and how that impacts their health.
Chelsea: Absolutely. There's a significant power imbalance in the patient-physician dynamic that needs addressing. Leading with empathy and taking the time to truly understand a patient's journey can make a world of difference.
Now, as we're nearing the end of our conversation, I'd like to ask a very personal question. How have fibroids affected your decisions regarding your fertility journey, and what does maternal energy mean to you based on your experiences?
Solonje: Fibroids haven't directly impacted my fertility markers, according to the data. However, the societal pressure placed on women to bear children is something I've had to navigate. There's this outdated notion that a woman's worth is tied to her ability to have children, which needs to be dismantled. For me, maternal energy isn't just about biological motherhood; it's about nurturing and caring for those around me, whether they're family, friends, or members of my community.
Chelsea: Exactly. We need to redefine what it means to be a woman and a mother beyond these outdated stereotypes. It's about embracing all forms of caretaking and nurturing, not just traditional motherhood.
Thank you so much for your time, Solonje. Your advocacy and willingness to share your journey are truly inspiring. You're a real voice on important topics, and I'm grateful for the opportunity to have this conversation with you.
Solonje: Thank you, Chelsea. And thank you to Looni for shining a light on these conversations and inviting me to be a part of it. It's essential to normalize these discussions and let others know they're not alone.
About Solonje
Solonje Burnett is the weed auntie, co-founder and Chief Culture & Community Officer of Erven - a data collaboration platform facilitating sustainable growth for brands + retailers through access to actionable insights. A Caribbean-American multihyphenate, creator, brand strategist, spaceholder and experience producer, she focuses on creating inclusive and intersectional containers for holistic wellbeing rooted in connectivity and care while amplifying marginalized + melanated practitioners, creatives, and entrepreneurs in cannabis and beyond. Solonje speaks, partners, and consults on brand education + marketing, social equity, sustainability, self care, sexual health, racial injustice, gender discrimination, and community empowerment.
She sits on the inaugural Advisory Board of CUNY’s new workforce development program, Cannabis to Culinary. Solonje was a member of the 2023 Clio Cannabis Marketing & Advertising Jury and an advisory board member for Broccoli Magazine’s Floret Coalition. She performs with the creative protest group Resistance Revival Chorus. Solonje has been featured in publications like Marie Claire, Forbes, High Times, Instyle, Refinery29, Girl Boss, Black Enterprise, Atmos, Well+Good and VICE.