Diversity of Patient Voices
Women Share Their Medical Journeys to Promote More Equitable Care
AMWA invites patients with common chronic conditions to share their journey in pursuit of higher quality and more equitable care. There is no better way for physicians, trainees, and medical students to gain empathy and understanding of the impact that poor health has on a patient. By listening to stories and bringing case studies to life, we can learn much from listening to our patients.
Healthcare delivery is likely to improve precipitously when the physician is willing to stop and listen. Patients, particularly women who present as patient or caretaker, often know their body best. By encouraging our patients to share their story, physicians create the opportunity to elicit invaluable medical insights that will help guide and inform patient care. And, if you are truly listening, you will learn not only what is bothering the patient in front of you but what really matters to them. The result— a more positive patient-physician relationship and the most favorable outcome for the patient.
AMWA Voice of the Patient Panel
Believing Me When I Say I Struggle with Fibroids
Tanika Gray Valbrun, African American women are three times more likely to develop symptomatic fibroids than women of other ethnic groups, and typically do so at an earlier age. Tanika Gray Valbrun, an award-winning journalist, patient advocate, and founder of The White Dress Project, shares her personal struggles with uterine fibroids.
I’m Tanika Gray Valbrun, founder and chief patient advocate of The White Dress Project for uterine fibroid awareness, based in Atlanta. I’m also a woman who has managed life with symptomatic fibroids since I was 15 years old. I say to you as physicians, allow each patient story you hear, allow them to serve as opportunities to think introspectively, and offer a new glimpse into the diverse patient perspective.
We must amplify the importance of advocating for funding and research for women’s reproductive health concerns, speaking truth to power regarding medical bias, health disparities, social bias, and racial inequities.
My goal and my hope in sharing this evening is that you will fully understand the power in the patient voice and the patient experience from the moment they begin to receive care from you. What I’ve learned is that when patients are empowered and encouraged to share their own stories, and most importantly when we are BELIEVED, we can truly become a valuable source of information, can help with our diagnosis, select the most effective treatment, and allow you to get a full grasp on what we are experiencing.
We ALL have implicit bias and it’s important to recognize that those biases can impact your work as a physician.
Being cognizant of the fact that every patient story has value and we have to hold our institutions and organizations accountable so that the resources are there to support patients of all walks of live. As a physician, You are there to educate, serve and marry the science with lived experiences. It is your obligation. Understanding your patients’ belief system, education, family history, and access should help you communicate.
Having the conversations, checking your individual thoughts, working to break down the systems that were created to enforce these things, and seeing your patients as real partners on your journey. For many of us, the story of Henrietta Lacks, Tuskegee, and most recently, Dr. Susan Moore, are not unique stories So when I was advised to have a hysterectomy at 28 years of age, I knew that was not what I wanted.
This fight is personal for me…My mother and I have always had a close relationship and at a very young age, she shared with me the devastating news that she lost two twins due to complications with fibroids. I’m her miracle baby.
Around the age of 15, I started to have symptoms of fibroids, heavy bleeding, abdominal pain and bloating, I managed life with fibroids for so many years, truly building my life and activities around them, always having to use the bathroom, never wearing white clothing, experiencing debilitating pain. During my early twenties, I was bleeding so much, I had to have multiple blood transfusions and the treatment I was offered for my bleeding was a DNC. I was told that they could not figure out why I was bleeding the way I was but there was never an offer of an ultrasound, MRI, not even a pelvic exam. For years, the heavy bleeding and pain didn’t stop. I wasn’t diagnosed with fibroids until 8 years later.
Years later When I got married, my husband and I went to see a doctor, he was a white male from a rural part of Georgia who had been a visiting physician in Atlanta. He reviewed my scans and basically told me that we would need to save our money to get a surrogate because a path to motherhood would be challenging because my uterus was so compromised with these growths. At the conclusion of my visit, he told me that I should have a hysterectomy. I was devastated. A month later went to get a second opinion and found a doctor who said she would perform surgery on me to remove the fibroids. A few weeks passed on I began to be in excruciating pain and had to have an emergency myomectomy surgery where she removed 27 fibroids.
There are so many women who would have taken that first choice and I knew no matter what he said I knew that could not be my own outcome.
During my recovery, when I finally had enough strength to walk around, I looked in my closet and realized I didn’t Haven’t white and I had my AHA moment that I should use the color white, which for so many women, represents their suffering with fibroids—the fear, the bloodstains, and always feeling dirty. I wanted to flip that script and transform the color into feelings of hope and promise community and support. So needless to say, from there the white dress project was formed.
As a black female patient who empowered myself, I have used every tactic to navigate the system and ensure that I receive the best quality of care. I categorize all of the health practitioners in my life as my personal medical Board of Directors and I am the CEO. My medical board advises me and offers guidance on what the best methods are to address my symptoms and heal but ultimately, I am the decision-maker and must choose the best option for the outcomes I want.
I hadn’t always thought this way, but I realized after being told that a hysterectomy is my best option that no one knows my body better than I do and I truly had to become a champion for myself and my health!
The White dress project is a global nonprofit organization dedicated to raising awareness about the uterine fibroid (UF) epidemic through education, research, community and advocacy. We are dedicated to this mission, by advocating for research funding, highlighting reproductive health inequities, educating many on fibroids and its treatment options, and empowering a community who will advocate for their best health choices and no longer suffer in silence with this chronic illness.
One of the things I love most about our organization is that our patient community is our north star and guiding force as we work to create an environment where their health concerns are believed, all their options are accessible, and where community, research, advocacy, and science intersect.
When you have fibroids you hardly feel comfortable wearing white because of the many women who have extremely heavy menstrual bleeding, bloating, and urinary incontinence. We wear white as a symbol of hope that we will find a cure for uterine fibroids. . Our goal is to continue to support the community we’ve created by improving patients’ education of the disease state and quality of life while working toward investigating research gaps, health disparities and gathering data to produce better outcomes for women managing life with fibroids.
Why is sharing our stories impactful?
- It gives us the freedom and the courage to be imperfect.
- It eliminates the shame of sharing our experiences.
- It teaches us that our stories are all connected; Even though we are taught and treated differently by race and socioeconomic status that all our stories are connected.
THE STATISTICS ARE STAGGERING
Fibroids disproportionally affect Black women with 80% experiencing this condition by the age of 50 years. Importantly, not only is the condition more prevalent in African American women, but the disease is more severe. Despite these facts, we understand little about what causes this disparity. Fibroids should be considered a public health issue, given the magnitude of the problem and the costs of health care for this disease.”
Even though more than 200,000 hysterectomies are performed each year for uterine fibroids and the annual direct health care costs for uterine fibroids in the U.S. exceed $2.1 billion, little is known about fibroids and how to prevent them.
So again, why are our stories important? Dr. James Segars, director of the Division of Reproductive Science and Women’s Health Research at John Hopkins University says, “Fibroids are a bit like snowflakes. No snowflake is the same and no case of uterine fibroids is exactly the same,” As such, the decision about which fibroid treatment to pursue can be complicated. Ideally, treatment should be personalized to the patient’s symptoms and priorities.
The Diversity of Patient Voices is vital because our stories are filled with ways to relate to us, concern for our lack of access, what are personal views on medicine are, it can lead to cultural competency, how we view our care and our treatment AND most importantly it helps you as physicians to meet the social, cultural, and linguistic needs of your patients. I often say the physician–patient dynamic is often is heart to heart language. And the relationship can be strengthened through your acknowledgment of your own implicit bias, calling out racism around you, and being a true champion for every patient.
As physicians, you must listen to that and sometimes for even a moment, silence the science, and have human-to-human conversations.
Finally, I always ask my doctors, would you offer this medication to your best friend, to your sister, to your mom?! And many times they are taken aback by that question but as I see it, if you wouldn’t offer this treatment plan to those you love, don’t offer it to me. If I would do better to see another physician, a different specialist, then refer me to wherever I can get the best care possible.
It is a celebration of the voices of women who for so long allowed their shame, guilt, pain, and trauma from fibroids to silence them. As I see it, in telling my story, we make history together, telling our stories and shaping our healthy future.
We find discovery when we are willing to admit, that we do not know all we need to know about this disease. We can shape new ideas about science and research which can lead us to the next thing we don’t know. That’s the dream for all of us. As doctors, scientists, researchers, and certainly as patient advocates. We are all striving for the same thing: solving the epidemics that plague us all.
A Patient Journey of Persistence with Thyroid Disease
LaQuilla Harris developed Graves Disease, and thyroid eye disease, leaving Mrs. Harris blind for more than 7 years, and then she became hypothyroid, and developed multiple other autoimmune disorders including type 1 diabetes and myasthenia gravis. By her own strength and perseverance, she is here to tell her story.
LaQuilla Harris suffers from long misdiagnosed and complicated thyroid eye disease that has left her struggling with double vision to this day. Physicians may have knowledge of thyroid disease but too few know what it is to struggle with an endless list of disease symptoms and complications beyond textbook descriptions.
“In 2006, I was diagnosed with Grave’s disease and Myasthenia Gravis. By the time I was finally diagnosed, I had developed significant exophthalmos (proptosis in both eyes) and a thickening of my eyelids that made it nearly impossible for me to even open my eyes. I couldn’t accept living like this so I persevered until I found my way to a doctor who said he could help me manage my symptoms.”
“After managing better for some time, I experienced new symptoms and was told that I was going through Thyroid Storm, which led to such an elevated heart rate that I had two strokes. I had the first stroke at her work and it took a long time for someone to find me on the floor of the office.”I had been laying there for quite a while, aware of my surroundings but unable to move.” She had a subsequent stroke by the time she arrived at the hospital.
“After being sedated, the doctors in the hospital room along with my primary care physician were speaking over me and saying they didn’t think she was going to make it. Despite being unable to respond, I could hear everything they said and I so wanted to them that I was going to be fine.”
Miss Harris recounts her chilling experiences trying to get help in the face of ever-changing status of her thyroid disease. “In fact, as I on a hard, cold examination table where I was told I was not going to make it yet I defied that prognosis. The most distressing part of having to revisit this story is that the physicians were talking about me as is if I wasn’t there; yet, I heard every word they said even though I wasn’t able to physically respond, and I remember every word to this day.”
After going so long undiagnosed, Miss Harris had lost a significant amount of her eyesight and continues to struggle with double vision today.
“In my experience, the doctors that come across as not beneficial were ones that wouldn’t listen. The difference between a good doctor and a doctor that’s not so helpful is the one who pays attention to you, the one who wants to know how long have you had your symptoms, the one who asks you questions, and the one that’s not afraid to touch you.“
“One way you can be sure you are giving the best care possible to your patient is to show some empathy with our medical condition. From experience, a physician who sits with 10 feet between them and never puts a hand on her, or examines her, is not really invested in diagnosing her properly or shows much interest in her wellbeing. “
A proper examination is essential to assure that you know exactly what the underlying pathologies are lurking in your patients and will lessen the chance of misdiagnosing or underdiagnosing your patients. “Even before beginning a physical exam, before laying a hand on the patient, your should make sure your patient feels comfortable. This requires that the doctor acknowledge any insecurities expressed by the patient, attempt to soothe any anxiety, clearly explain the physical exam process, and ultimately address the patient’s health concerns. I believe the level of trust patients put in physicians when performing physician exams is enormous and often overlooked or undermined by some doctors.”
Miss Harris ended by sharing this: “I think they [physicians] were afraid to touch me. Please listen, please pay attention, that’s all that we can ask. I wish to tell every physician to believe in your patients, and I encourage patients to document their medical journeys to keep track of their own understanding of their disease processes so you are able to demonstrate your medical journey to your physician with clear detail.”
Dealing with a Lifetime of Chronic Pain
Katie M. Golden is a chronic patient advocate, writer, and community moderator for Migraine.com. She shares a lifelong struggle with multiple pain conditions, and presents her personal case study to challenge you to be a good listener.
Katie Golden. Patients suffering from chronic pain often know as much about their condition or even more than their physician. “I, for one, researched extensively into my symptoms to learn what to expect, what my options for care were, what would give me the best chance for pain relief.”
I suffer from chronic intractable migraine, also known as status migrainous, as well as occipital neuralgia. My headache pain grew so constant that I had to leave a job I loved. I couldn’t function, and I couldn’t predict how I would feel from one day to the next. When I sought help from a headache specialist who was unable to find an adequate treatment plan for me, I was referred to another headache clinic. There, I was placed on a five-day inpatient IV ketamine infusion that is done annually, as well as receiving routine headache medications and a nasal spray to take as needed. I have benefitted significantly from this treatment plan, experiencing an overall reduction in the severity and frequency of my headache attacks.
Honestly, it is exciting to see all the new remedies on the market regarding headache management. What physicians can learn from her story is that teamwork is essential in medicine. If one specialist has exhausted their options, instead of deferring the patient and stating there is nothing left to be done, referring them to a colleague should always be the next step.
It is often very frustrating for patients to see their doctor and be made to feel that their concerns are merely stress-induced and that there is nothing you can do for them. Patients struggling with chronic pain desperately want somebody on their side and want to feel like someone is present and who wants to help me. Sometimes it seems as if the doctor is afraid of the complications that may emerge, how it will affect my day-to-day life, and what outcomes might be expected.
“Patients also want to know what our physician’s idea is for our best chance for long-term treatment and being involved in their management plan. The best thing for physicians to do is to walk the patient through the chronological timeline and steps to their management, explaining at each step if something does not work what they want to try next.”
Most patients with chronic pain conditions often have comorbidities, such as anxiety and depression that sometimes leave us putting all our hopes into a single plan in which we believe if this medication or treatment fails, we will feel hopeless about gaining any relief from our pain symptoms. The doctor-patient relationship is incredibly important, especially for chronic pain patients since it’s a long-term partnership and we depend upon our physicians to stick with us as our conditions change and treatments evolve.
Educating Latinas About Preventing and Managing Osteoporosis
Alejandra Arriaran. I am a peer educator for American Bone Health, working with women to inform them about osteoporosis and how they can manage this condition. This community of Hispanic women and Latinas requires a lot of resources, support, and education, especially among these women who are the heart of their households and their communities.
Alejandra Arriaran is a Columbian-born Californian who works as a translator and patient educator for Latinas on behalf of American Bone Health. She shares the struggles faced by this complex and diverse population who experiences a high prevalence of lactose intolerance, lower intake of dietary calcium, higher rates of bone fractures, and greater risk of developing diabetes, all risk factors for osteoporosis. This may be because Latinas are more prone to lactose intolerance than are other groups and they are more likely than white women to develop diabetes, which may increase their risk for osteoporosis.
“When I began working as a patient advocate, I was fascinated when meeting Hispanic women from different parts of the world because the differences in culture, language, and health considerations differed even from me who is originally from Columbia. I found I had much to learn from these women. ” I see these women as survivors; they come to this country and take on work doing strenuous manual labor. They are very passionate about what they do and they want the best for their families. Unfortunately, it is really difficult for them to get access to basic healthcare, so they often end up in emergency departments when their symptoms become exacerbated. They rarely receive preventative care, resources, and other information needed for them to make better choices for themselves and their families.
“The type of work that these women do — working in the fields picking fruits and vegetables, cleaning houses and businesses. These types of work are very physically demanding, and putting a lot of constant strain on their bodies, all of which puts them at higher risk of osteoporosis compared to white women.” I believe that it is important for the women that I work with to understand how important it is to take good care of themselves such as having a better way of doing things like flexing or picking things up in ways that protect their backs and their bones.
I’ve also learned that the way I speak to them in Spanish is not effective if I don’t adjust for where they come from— women from Mexico, Dominican Republic, Puerto Rico, or Venezuela. There are different words and ways of saying a medical concept so we must be more than a translator. Even within the same community or same country, words are used differently and so it’s fascinating how language can be so diverse within the same language.
For physicians, it is very important to understand the cultures and variations among the patients in the communities you serve. Hispanic women in this country are very resourceful and will do their best to do what is needed for their families, despite not speaking the language. A patient does not have to speak the same language as their physician to feel that the doctor is being genuine and cares to help address their medical concerns. Patients are very quick to share their instincts when they feel trust despite having a language barrier. This matters because if a Latina goes back to her community and speaks well of her experience, others will take the risk to visit the same doctor. Then the community can be better off.
“Another trick that I have learned is that when teaching Latinas how to manage their osteoporosis is to recommend functional exercises within their daily lives. For example, just teaching them how to sit and rise out of a chair is a great lower back exercise, essentially doing a perfect squat.”
“Similarly, when speaking about nutrition, educating women on adding a little more nutrient-dense foods to a dish they are already preparing will help better enrich the calcium in their diet. By focusing on medical recommendations that fit into patients’ lives is most likely to be accomplished when they can be implemented as part of a daily routine. This can help lessen a sense of feeling overwhelmed by having to make major changes. With just small adjustments, we can help women and their families build stronger bones and enhance their nutrition to reduce the risk of osteoporosis.