‘Can you step into my office?’ Anticipating an assignment, my research advisor abruptly stated, ‘You know you’re disabled, right?’: Woman diagnosed with Ehlers-Danlos Syndrome, POTS discovers identity after lifelong battle with chronic illness

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Early Life

“The banks of the James River in southeastern Virginia were my first home. I lived a privileged life, cradled in the arms of family and the bliss of childhood. I recall long summer days playing with my cousins, swimming in the river, and living each day as fully as only a child can.

Young girl with blonde hair and blue eyes makes a silly tough face at the camera
Courtesy of Lucy Trieshmann

Circumstance ushered me swiftly into my second life around age 10. I barreled towards early maturity as my parent’s divorced, the dissolution of my relationship with my father and his side of the family, my baby brother’s birth, and my mother’s metastatic cancer diagnosis marked my life in quick succession. My chronic pain and health issues also made themselves known, flaring in my early teens as they do for so many of us. I held myself together with braces, Kinesio tape, and over-the-counter pain medication to compensate for how thin life stretched me.

Teen girl take a photo smiling and pointing at a flag with Kinesio tape wrapped around her wrist
Courtesy of Lucy Trieshmann

Between competitive horseback riding, caring for an infant brother, navigating cancer treatment with my mom, and remaining a straight-A student, my body worked overtime to help me survive. I dealt with many injuries caused by unexplained (at the time) ligament laxity, not to mention numerous illnesses each year that tagged me as the ‘sick kid’ in high school. The doctors told me I was fine, and I was all too happy to accept their words as truth; what teenager wants to be sick? I certainly didn’t. Even though I knew that something was wrong in my heart, I pushed those thoughts aside so I could continue living my life at breakneck speed.

Teen girl holds her baby brother while getting ready for Homecoming in purple dress
Courtesy of Lucy Trieshmann
Teen girl competes in horseback riding competition
Courtesy of Lucy Trieshmann
Courtesy of Lucy Trieshmann

Thriving In Life

At 18, I moved two hours from home for college; thus began my third life. I was fiercely dedicated to my family, but it was time to explore my identity outside the boundaries of my hometown. I finally felt intellectually stimulated by school, and it fed my soul. I devoured feminist literature, gave myself a crash course in the liberal politics considered taboo in my previous life, and developed a picture of who I was at my core. These revelations filled me with a sense of euphoria; I focused selfishly on my personal development as I never had before.

My mother’s cancer continued to ravage her body, rendering her unable to work and leaving us unsure of her survival. It was heartbreaking to stay away, but my relatives encouraged me to remain in school — they took care of her and my brother so I could pursue the educational opportunities not many in my family had. That is a gift I can never repay, but I attempted to do them proud. I worked over thirty hours per week as a bus driver to support my family’s finances, played sousaphone in the marching band, made fantastic friends, started weightlifting, overloaded on class credits, and researched chronic disease management in low-resource communities. I wrung every ounce of value from the opportunities I was so lucky to have. I was thriving.

Young blonde woman takes headshot in professional style jacket
Courtesy of Lucy Trieshmann

POTS Diagnosis

My fourth life was the most challenging. In addition to my frequent injuries and illnesses, I also struggled with gastrointestinal ulcers and developed a gluten allergy during college. I thought I was merely unlucky. After I began collapsing at marching band practice, however, my feeling as a teenager returned: something more serious was wrong. Months of cardiology appointments and emergency room visits where doctors told me I was ‘just anxious’ finally culminated in a diagnosis of postural orthostatic tachycardia syndrome (POTS). Diagnosis of the underlying cause, Ehlers-Danlos Syndrome (EDS), followed soon after.

College student recently diagnosed with POTS and EDS lays in hospital bed for surgery
Courtesy of Lucy Trieshmann

I have continued to acquire diagnoses ever since, but I felt the weight of these initial two most acutely. I spent my final year of college nearly bedbound, fully walker-bound, and heavily reliant on my then-boyfriend and the few friends who remained. I spent more time wrestling my quality of life from the miserly fists of health insurance companies than I spent on school. All the activities I built my life around — marching band, the gym, work, parties — fell suddenly away. Never had I felt so profoundly alone.

College student sits on her walker and takes a photo in front of an Amtrack train
Courtesy of Lucy Trieshmann

Chronic Illness Journey

For a while after my diagnosis, I was hard to be around. I felt angry at my body for stopping me from living the life I wanted. Jealousy of my peers whose life paths continued unaltered crept in. I couldn’t shake the unfairness I saw in it all. Then one day, my research advisor asked me into her office. We had worked together for several years at this point. I knew she was an ambulatory wheelchair user, but we didn’t speak much of her disability or identity as a Disabled person. That day, I sat expectantly on her couch, anticipating a research assignment. Instead, she abruptly stated, ‘You know you’re disabled, right?’ With that question, she saved my life. She’s remained my close friend and confidant ever since. When I fell ill, I lost myself because I framed my illness as a war to be fought on the battleground of my body. Realizing (or, perhaps, being told) I was disabled gave me the language to describe my experiences and the community I needed to understand them.

Young college student takes a photo with her service dog
Courtesy of Lucy Trieshmann

That was the day my fifth life began. I spent the next few years exploring the contours of my new Disabled identity. I met more disabled people and found my community. I read disability theory, stocking up on years of knowledge I never learned in school. With this knowledge came outrage at disabled people’s long history of abuse by systems intended to protect us. I also grappled with the embarrassment I had never considered these issues until they impacted me. During this time, I began the lifelong work of confronting how my privileges and marginalities intersect with one another — how my privileges as a white woman alter my experiences as a Disabled woman and vice versa. I got healthier, then much sicker, then a bit healthier again. My disabilities morphed, as did my sense of self, and I learned to morph with them.

I believe I’m now entering the sixth iteration of myself. For the first time in my life, I feel settled in my identity and deserving of the space I occupy. I see my future, in all its uncertain and imperfect glory, spreading out before me. My edges have softened, and I take life’s complexities in stride. I no longer fear how my disabilities will change with time and how they, in turn, will change me. Finally, I can see myself blooming. In retrospect, can I see that I was blooming all along.”

Woman in wheelchair with blue hair takes a photo with her service dog in New York park
Courtesy of Lucy Trieshmann

This story was submitted to Love What Matters by Lucy Trieshmann of Brooklyn, NY. You can follow her journey on Instagram and her website. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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