A few years ago, I did not have to be the woman in the grocery aisle investigating every ingredient on the side of a package. I used to have a lot more energy, too. I even used to see my friends more than the various doctors I frequent on a weekly basis. This was all before I began developing symptoms for a rare autoimmune disease. Developing an autoimmune disease has completely changed my life. So many of the things that used to be mundane, like an hour-long car ride, now take serious planning. Did I take my supplements to prevent a flare? Do I have my medication in case this drive causes a flare? The list of preparation questions is long. At first when I started developing symptoms, no doctor could tell me what was wrong. My primary care physician misdiagnosed me and prescribed incorrect medications for three months. It took three months to get an appointment with a specialist, three more months to get the necessary surgery, two months to fully recover from the procedure, and then finally I got the diagnosis of a rare autoimmune disease called Interstitial Cystitis. The physical pain I experienced while searching for a diagnosis was debilitating. The emotional pain, even worse. Life as I knew it was gone. I could not work, I could not sleep, food became triggering, I could not exercise or enjoy a night out with friends. The worst part for me was that I looked completely normal. There were no visible signs that I was in level-eight-out-of-ten pain most days, so, when people would courteously ask, “How are you?” I would respond, “I’m good!” because saying, “I’m miserable and it feels like my bladder is on fire” is not socially acceptable. It was lonely. The road has looked vastly different since I received my diagnosis. Thanks to my scientific background from my undergraduate years, I have felt very comfortable diving into all of the research about the disease. I have studied what the American Urological Association deems the best treatments, and I have learned which treatments are no longer accepted as effective. I have advocated for myself in multiple doctor’s offices and have created a holistic treatment plan that has been very successful over the past six months. Prior to developing Interstitial Cystitis, I started a wellness company in 2017 called Unlocked. Unlocked is a thriving wellness community and online store that sells sustainable, eco-friendly, and fair trade products. Managing a company while in the throes of an autoimmune flare is extremely difficult, but even on my lowest days I am in love with the challenge. My business partner also has an autoimmune disease, and we have used our struggles to create a new branch of Unlocked—an online chronic illness support group. We are a family of sisters that meet online once a month to support each other, share struggles and victories, and to remind one another that we are not alone. In the future, Unlocked hopes to host in-person retreats for individuals suffering from chronic illness and autoimmune diseases. It turns out that I am grateful for having this disease, because with all of the healing that I have done I know I will be able to help countless others who walk this challenging path. It has made me more empathetic, has deepened my desire to become a mental health counselor, and has enriched my purpose as an entrepreneur in the health and wellness sector. Having Interstitial Cystitis is one of the biggest challenges I face, and it is also an integral part of my story.

I have overcome adversity in copious ways throughout my 27 years of life. From learning how to cope through my parents’ divorce as a young child, to keeping my small business afloat during Covid, adversity has shaped me, has strengthened me, and has inspired me to give back to others. The most recent challenge I have overcome as a woman in American culture is navigating the health care system with a relatively rare autoimmune disorder. I have been passed from doctor to doctor, have been questioned if I am telling the truth about my symptoms, and have been told my pain was a psychological problem and that I “just needed to relax.” 20 percent of women feel like they have experienced gender bias in health care settings (Adams, 2021). I have personally experienced this, and it has made receiving medical information and healthcare very challenging. Though the process has been extremely difficult, I have used plentiful tools to overcome this adversity and receive a proper diagnosis and a hopeful treatment plan. I have overcome this adversity is through various measures, including doing research on my own before showing up to doctor’s appointments. With my background in Nutritional Sciences, I learned how to find trustworthy sources and gained skills on how to properly research difficult topics, such as rare autoimmune disorders. I was able to find an empathetic physician online that produced a course about my disorder (interstitial cystitis), and I took this course. This educated me on the nature of the disorder, provided me with the latest findings about interstitial cystitis, and empowered me to advocate for myself within the healthcare system. With this information I was able to trust my voice even when the various specialists I have seen tried to dismiss me, give me treatments I knew were not effective, and question the validity of my pain. Now, I am on the best treatment plan for myself using the different therapeutic techniques that best suit me and they are working! Had I just listened to the doctors without advocating for myself, I would not be in the same position of healing that I am today. This experience has taught me the power of education and advocacy. As a graduate student at Capella University working towards becoming a clinical mental health counselor, educating and advocating for clients will be a big part of my career. I intend to use my personal experience and education to advocate for proper health care for the Haitian immigrant population in Florida. Haitian immigrants are the second largest immigrant population in Florida, and 49% of Haitian immigrants in the U.S. live in Florida (Florida Department of Children and Families, 2021). Haitian Americans are severely underrepresented in our healthcare system, and their triple minority status (Black, immigrant, non-English speakers) makes it very challenging for them to receive proper care - especially mental health care. I hope to advocate for and serve this population to continue making Florida a more equitable place to live and help to reduce barriers for Haitians to receive proper and equal healthcare. References: Adams, M. A. (2021). Don’t fix the women, fix the system: recognizing and addressing implicit gender bias in gastroenterology training and practice. Gastrointestinal Endoscopy, 93(5), 1057–1059. https://doi.org/10.1016/j.gie.2020.10.022 Refugee Services. (2021). Florida Department of Children and Families. https://www.myflfamilies.com/service-programs/refugee-services/overview.shtml