Meet the Member: Claire's Story by Chelsea Goldstein

Claire is a thirty-six-year-old mom, with a  refreshingly real disposition, shares her experiences of living with POTS. Her dysautonomia is accompanied by gastroparesis, irritable bowel syndrome, hypermobile Ehler-Danlos Syndrome, polycystic ovary syndrome (PCOS), and endometriosis among others. She worked as a Certified Dental Assistant for ten years before she resigned due to disability.  

Though Claire recalls she has probably had POTS and EDS for many years, she officially sought a diagnosis at age twenty-eight. At the time, she was working full-time, married, and preparing to start a family. While she has always had some symptoms, she attributed them to her PCOS and endometriosis. However, she knew there must be another explanation when her symptoms flared during her pregnancy in 2010. Most of that year was filled with debilitating pain, migraines, unrelenting morning sickness, and both erratic heart rate and blood pressure. While she felt something was not right, her doctors dismissed it as typical pregnancy symptoms. She had a difficult nineteen-hour labor  followed by several months of caring for a newborn, and trying to care for herself at the same time. By this time, she knew her symptoms were not typical of a pregnancy, nor postpartum depression, and actively began to seek answers. 

In the next four and a half years, she persevered in her search for answers, and saw nearly fifty doctors.  Most of these doctors told her she was “too young” or “too pretty” to be so sick. Some argued her symptoms were due to the stress of being a new mom. Even some friends and professionals questioned her experiences, believing she was not sick enough to seek help. She inevitably felt some sense of defeat after years of dismissal, and it was then that a twist of fate led Claire to a diagnosis – a close friend spoke with a doctor about her case, and the doctor wanted to see Claire. During their visit he spoke the magic words that we all long to hear: “I believe you, you are not crazy, and you are not alone.” Her search continued for several more months during which time she also discovered her home was filled with black mold. She was finally diagnosed with POTS and EDS at age thirty-two. 

After such a long and harrowing experience, Claire was elated to have a diagnosis. She felt she could finally start treating her conditions,  as well as receive belated empathy and validation from professionals. While her diagnosis was empowering and encouraging, Claire astutely articulates that we must remember that a diagnosis does not always change the way people with dysautonomia are treated. Even with a diagnosis, there is not clear and simple treatment for dysautonomia. Additionally, many professionals still do not understand the condition and, at best, provide little support while, at worst, continue to minimize and mock the experiences of patients. This roller coaster is familiar to many of us – we desperately seek answers for a smattering of life-altering symptoms. Then we finally receive them, and we are consumed by relief. However, then we must endure an entirely different emotional process of realizing the complexities of dysautonomia treatment and the lack of understanding about the condition in our society. 

Today, Claire still struggles with her dysautonomia. She is in her mid-thirties and uses a shower chair, walker, cane, accessible parking, and occasionally a wheelchair. She used to love camping, but has had difficulty getting outdoors even with adaptations. One of the most thought-provoking points that Claire makes is that there seems to be a stereotypical success story of individuals who are expected to “overcome” illness by running marathons and raising a lot of money. According to that stereotype, many of us feel  'less than' if we don’t reach these often unrealistic heights. I would argue that this stereotype needs to be challenged. On the contrary, Claire is a refreshing and real inspiration through her courage to share her story even when she does not feel she has fully figured out her path. She reminds us that it is human to experience hope, despair, frustration, and inspiration all at once. She shows us that it is okay to be complex because if we all fit the cliché inspiration success stories we would lose the diverse, empathetic, creative, and intuitive individuals who make up our community. I believe that many of these qualities are cultivated among individuals living with dysautonomia specifically because of the unpredictable struggles of their daily lives. Claire teaches us that being real about where we are each day is, perhaps, the most inspiring story of all. 

*If you would like your story to be considered for a future "Meet the Member" article, please reach out to Chelsea at chelsea.goldstein@dinet.org