“When people have chronic medical concerns, they carry the emotional burden but there is a way to share the burden, including with people at work. There’s no shame in what’s happening with your body,” Dr. Charmain Jackman, Author, Clinical Psychologist and Entrepreneur.
Women’s health has lacked sufficient research and funding for decades so many face a slow diagnostic path, to untangle mysterious symptoms. Most of us know at least one friend or family member with “really bad periods” and despite how common that is, pinpointing the cause, whether that’s uterine Fibroids or conditions with similar symptoms like, Endometriosis or PCOS, takes an average of 7 years.
Scheduling appointments, chasing specialists, and waiting is like an unwanted part-time job while handling the rest of your busy life. So how can you manage a chronic condition or serious illness without losing your confidence, or your career? There are steps you can take to emerge with greater agency, clarity and support.
Women’s Health is Emerging from the Shadows
Uterine fibroids are extremely common, it’s estimated most women (70 – 80%) have these benign tumors by age 50 and for many women, they don’t require clinical intervention. But they’re more prevalent for women of color, especially Asian and Black women. Nearly one third of women with Fibroids, including most Black women with Fibroids, experience complications that require clinical or surgical procedures. Including debilitating pain, fatigue, fainting, nausea, high risk pregnancies or fertility difficulties.
The path to relief is rarely clear so mental health strain can match the physical distress. Thankfully, this is changing and I’m sharing insights from last weekend’s Fibroids Awareness event, hosted by The Resilient Sisterhood Project and Boston Medical Center to learn about steps women can take to emerge strong and supported while navigating reproductive health conditions.
Policy is Catching Up
Intense symptoms, like fainting or doubling over in pain, aren’t really conducive to business as usual at work. And there’s growing momentum to have paid leave for reproductive health conditions, like miscarriage and severe menopause or menstrual symptoms. Policies to protect women from losing earnings or sick time. Recently, a group of US lawmakers introduced the Reproductive Healthcare Leave Act bill.
A small number of companies already offer paid menstrual and/or menopause leave for their employees, and several states are expanding existing disability and employment law to address the need. It is also public policy in a handful of countries, including Japan, China and Spain. Critics, however, cite that until cultural norms address stigma about discussing anything involving the uterus, policies will remain underutilized by women worried about compromising their careers.
Navigate Disclosure at Work
Charmain, Author of The Black Therapists Guide to Private Practice, said, “It’s something you’re going to want to address with your employer when you need more flexibility in your schedule. The Americans with Disabilities Act provides allowances if you need accommodations, and you don’t have to initially disclose your diagnosis. If you are looking for changes in your work schedule, get a letter from your physician and use that to self-advocate.”
Although sharing personal information about your health with managers or colleagues feels vulnerable, Charmain explained there’s also risk if people misjudge your situation. Especially if you have unexplained absences, lateness or the need for frequent medical visits. Providing some context can ultimately make it easier to get the support you deserve.
Get Mental Health Support
Motherhood already requires a lot of mental and physical energy so, having support for our health journeys and challenges reduces the sting. Charmain said, “high rates of depression and anxiety come along with the physical diagnosis of fibroids. There’s also the fatigue, and some of that is the lack of sleep when you have to get up in the middle of the night several times during your period.”
Therapy is a great option if it’s available to you. She added, “what I often say to people, once they have a diagnosis is to really think about what are the things they can do, to make shifts? For example, if there are challenges around sleep, what we can start to do to improve their sleep quality. If it’s a social isolation problem, how do you make sure we take care of that? So, it’s understanding what the primary symptom is and sometimes it’s also advocating with their medical provider to ensure they’re in the right treatment and receive the right support.”
Find the Right Medical Team
You also need thoughtful doctors, with the experience to help you find answers. If you’re interviewing a potential healthcare provider, ask questions about their backgrounds, training and experience with symptoms you’re experiencing. Fibroids Expert, Dr. Nyia Noel, OB/GYN, Assistant Professor and Medical Director said, “one of the challenges we face as physicians, is that even with the best intentions, we are short on time. So, to explore everything and make the patient in front of us feel heard, we’ve done a few things at Boston Medical Center to improve. Including, participating in community events like this for time outside of the hospital, to talk in more depth. And to spread discussions with patients, across several visits, so there’s space to cover their needs.”
Talk with Your Female Relatives
If you are lucky to have your mother, grandmother, or aunts to speak with about their experiences, many of these conditions run within families. You gain insight and another supportive person to ease the stress. When Lilly Marcelin, Executive Director of the Resilient Sisterhood Project asked personal trainer Darlene Charles, how she navigated the emotional side of her diagnosis, she bravely shared her story of two surgeries to become Fibroids-free. “…When I told my mom I was having the surgery, she said, ‘oh, I had that and your great aunt had a hysterectomy.’ And I said, ‘why aren’t we talking about this within the family?’ When clients share their stories, I can now help them clients advocate for themselves, because I don’t want anyone to go through what I went through.”
Preserve Your Fertility if You Are Family Planning
As Dr. Yvonne Gomez-Carrion, OB/GYN and Fibroids Expert shared, “one woman came into my office and said, ‘I’m ready for my hysterectomy now’ because every woman in her family had to have one. So, she assumed it was a rite of passage after menopause.” However, as the doctors in the room shared, there are many alternatives and if a healthcare professional pushes for you to have a hysterectomy, without discussing your options, that’s not the right doctor for you. Learn about the full range of different treatments and tradeoffs, especially if your family is not complete.
Find a Village Through Pregnancy and Beyond
If you’re navigating Fibroids, or other conditions that make your pregnancy high risk, it helps to have other moms who get it become part of your community. Nyia said, “Through a grant, we had created a series of sessions and curriculum, centering pregnancy, where people with similar due dates would come together in groups of 10 – 12. Each session had time for mindfulness and patient’s stories about the impact of their clinical and home situations on the journey to fibroids. We’ve discussed how to take that model, for high-risk pregnancies, where there’s chronic pain and replicate it more broadly. It’s thinking outside of the box and with an open mind.”
Reevaluate Your Childcare Needs
Most chronic conditions require ongoing scheduling for visits, scans and screenings, which may take place outside of traditional childcare coverage hours. If you are partnered, start there to plan for sudden changes in your childcare needs. If that’s not an option talk with your friends, neighbors, parents, daycare, nanny or sitter to make sure you have coverage options through unpredictable seasons and appointments. You will also, like with all things childcare related, want to have an alternative plan for when coverage plan A falls through.
Chronic Health Conditions Take You on a Journey
Whether it’s reproductive health, mental health or other conditions that may be ongoing and/or slow to diagnose, know that you can still flourish, and that many others are navigating similar needs.
You can build support in the form of conversations with trusted friends or colleagues, patient support groups through your medical provider, self-compassion, seeking workplace grace, added childcare coverage, and ideally, therapy to manage the logistical and emotional roller coaster.
Learn more about the incredible nonprofit organizers of this event.
The Resilient Sisterhood Project, Boston Medical Center, and Our Bodies, Ourselves.
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Many thanks to the incredible speakers and experts who shared their wisdom!
About Dr. Yvonne Gomez-Carrion, MD, FACOG
Yvonne Gomez-Carrion is an assistant professor in obstetrics and gynecology at Harvard Medical School and director of Boston’s Beth Israel Deaconess Medical Center’s (BIDMC) Department of Obstetrics and Gynecology Resident Surgical Service. She completed her residency training at New York-Columbia Presbyterian Hospital and joined BIDMC in 1987.
Yvonne is a gynecologic surgeon who performs complex procedures via both open and minimally invasive approaches. She believes in a holistic approach to health care and has devoted her professional life to educating patients about their bodies’ function and resiliency.
Outside of work, she is involved in several community organizations including the Resilient Sisterhood Project, Community Conversations and the Concerned Black Men of Massachusetts. She enjoys spending time with her family and friends and writing poetry.
About Darlene Charles
Dedicated Personal Trainer with 8+ years of experience delivering exceptional client-focused training and customized fitness programs. Specialized in strength training, bodybuilding, weight management, and rehabilitation. Certified in Pre/Post Natal Fitness, Kettlebell Training, Pain-Free Performance, Animal Flow, and Precision Nutrition Level 1. Passionate about helping clients achieve sustainable results through safe, effective, and tailored coaching strategies.
About Dr. Charmain Jackman, PhD
Charmain F. Jackman, Ph.D., is a licensed psychologist of Barbadian heritage, Author of The Black Therapists Guide to Private Practice and the Founder & CEO of InnoPsych, Inc. Growing up in a culture where the stigma of mental health was pervasive, but therapists of color were not, she decided that she was going to change that. Dr. Jackman has spent the last 20 years working with people of color (POC) in hospitals, clinics, courts and schools, and has consistently observed that POCs long for therapists who look like them, who understand them and who will do right by them! That knowledge has inspired Dr. Jackman to make it easier for POC to find therapists of color! She also wants to change the negative views of therapy and to educate POC about the necessity of taking care of their mental health and to empower communities to heal.
About Lilly Marcelin
Lilly Marcelin is the Executive Director and Founder of the Resilient Sisterhood Project. She’s a community activist and organizer who has dedicated herself to a lifelong journey around racial and social justice equity. Ms. Marcelin has worked on a broad range of issues from gender-based violence, human trafficking, health and socioeconomic disparities to women’s reproductive health and rights. She is the Founder and Executive Director of the Resilient Sisterhood Project (RSP) with a mission to inform and empower women and young adults of African descent about the common diseases of the reproductive system that disproportionately affect them. Ms. Marcelin strongly prefers to work in partnership with–rather than on behalf of–Black women to address deeply rooted systemic racism.
Ms. Marcelin holds educational degrees from:Wellesley College – B.A. Women’s and Gender Studies with a concentration in science, public health, and Global health, ufts University – Masters in Public Policy and Boston University School of Management – Certificate from the Institute for Nonprofit Management and Leadership (INML) program.
About Dr. Nyia L. Noel, MD, MPH, FACOG
Dr. Nyia L. Noel, MD, MPH, FACOG is a board-certified obstetrician-gynecologist and Director of Minimally Invasive Gynecologic Surgery at Boston Medical Center (BMC). Dr. Noel is also an Assistant Professor of Obstetrics and Gynecology at Boston University Chobanian and Avedisian School of Medicine. Her clinical and research interests include fibroids, endometriosis, disparities in maternal morbidity and mortality and health care access.
