Meet the Member: Isabelle's Story by Chelsea Goldstein

Isabelle is a young, creative entrepreneur but that wasn’t always her plan. She excelled at tennis as a preteen and hoped to pursue it as a full-time career. This seemed possible until an episode of heat stroke during a tennis match caused her heart rate to be sustained around 180 beats per minute for several days thereafter. She knew something was wrong having been a relatively healthy young woman prior to the episode. However, the doctors in the emergency room she visited told her that her symptoms were “all in her head,” and they dismissed her heart rate as a byproduct of being an anxious, preteen girl.

Unfortunately, many of us know this story all too well. Was Isabelle anxious? Maybe. Who wouldn’t be after such an intense health episode with no explanation? In my years of writing the Meet the Member column, I’ve talked with so many women who have conveyed that being dismissed as anxious, dramatic, and overly sensitive have been, by far, the most difficult parts of their dysautonomia journeys. I, too, can relate. Isabelle certainly experienced this dismissal throughout her diagnostic process that took about a year and a half. She visited gastroenterologists, cardiologists and made several trips to the emergency department, but received no explanation for her sustained symptoms. Yet, she knew something was wrong; she went from a top tennis player to not being able to walk a mile in gym class.

Though many of Isabelle’s physicians did not take her debilitating symptoms seriously, she ultimately found an insightful doctor who thought outside the box to give her answers. Her now primary care doctor found a connection between Isabelle’s experiences and his time in the Army when he had witnessed several servicemen never return to full health after severe heatstroke. She was ultimately diagnosed with dysautonomia which provided her the validation, and knowledge, to move forward.

Her diagnosis was bittersweet; it gave her answers, but it also made a full-time tennis career feel unattainable. Her mom bought her a camera in an effort to help Isabelle forge a new path, and she immediately fell in love with photography. Just a few years ago, she was selected to participate in a National Geographic Student Expedition in Yellowstone National Park. This was a life-changing experience; she solidified her love for photography, she was able to learn from some of the best professionals in the field, and she made lasting friendships. Now, at age twenty-one, she is a freelance photographer for the Arkansas Democrat Gazette and works for a couple of music publications doing concert photography. She is also currently applying to internships and hoping to go to college in the near future. (*editor's note:  Photo at right an example of Isabelle's work)

Isabelle’s strength, ambition, and maturity were evident during this interview. She has clearly made the best of her life with dysautonomia and credits it with helping her discover her passion for photography. However, her difficult diagnostic experiences—particularly being dismissed as an anxious, preteen girl—have certainly contributed to her identity as a young woman. She discussed some of the issues with the ingrained gender discrimination in some of the healthcare systems. Many women with dysautonomia, like Isabelle, wonder if their initial symptoms would have been dismissed so readily if they were men. She also talked about the insight of her primary care physician who was able to draw a connection between the symptoms of a young, female athlete and full-grown, military servicemen.

The dichotomy between supportive and unsupportive physicians is an important issue in our dysautonomia community. It makes us realize that we need to recognize, more often, the doctors, like Isabelle’s primary care doctor, who have been tremendous allies to all of us. Without their insight, research, and help with advocacy many of us would remain undiagnosed in a healthcare system where some professionals are trained that there is a straightforward answer for our complex, and sometimes elusive, collections of symptoms. We commend and thank these medical professionals, and we will continue to do our part in sharing accurate information about dysautonomia. Hopefully, these continued partnerships between the advocacy and medical communities will minimize diagnoses of female hysteria so that ambitious women like Isabelle can move forward to make their mark in the world.

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