Published: 17/05/2023 Tags: Stories

I am not my illness, and my illness is not me.

I am not my illness, and my illness is not me.

My name is Meghana, and I am a freshman at the University of Southern California. For the last four years, I have battled Ehlers-Danlos syndrome (EDS), along with postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), irritable bowel syndrome (IBS), and chronic fatigue syndrome (CFS).

It took over three years to receive this diagnosis. I have traveled all over the nation and world, meeting over 70 healthcare specialists, and being both belittled and empowered by them.

My first symptom started in December 2018 when I was having trouble with handwriting in high school. I was misdiagnosed with Carpal Tunnel Syndrome and received an unnecessary surgery. Over the course of the next two years, my pain began spreading to the rest of my joints, I started constantly experiencing dizziness and chest pain and had trouble keeping any food down.

All of my symptoms simultaneously appeared, one after another, and as a teenager, I was greatly overwhelmed and very devastated. Soon after, I was unable to handwrite, I had trouble walking for short periods of time, and I was always in excruciating pain.

EDS has taken away so many things I loved to do. Art is my passion, and I love to indulge in a variety of mediums – including painting, calligraphy, scrapbooking, piano, violin, and so much more. However, the most devastating thing that EDS took away was my ability to dance. For fifteen years, I have performed Bharatanatyam, an Indian classical dance form, which has been the bridge to my Indian heritage as a first-generation American of Indian immigrant parents.

Dance is my safe place, free from judgment. It is my form of expression, allowing me a way to move without words and to simply breathe. As the collapse of this bridge shattered my connection to my culture, to my ancestors, and to my home, EDS did not just impact the physical connectivity of my body but also the connection to my identity as an Indian-American.

My inability to dance destroyed me. I was unimaginably upset at the world for changing my life and taking away so much from me. Since physical therapy is the main treatment for EDS, I spent most of my time there. Rehabilitation is debilitating and painful, and I dreaded it.

However, I could not have had a better physical therapist.

Regardless of his lack of prior knowledge of EDS, he researched to make my exercises more effective. He would make painful exercises more interactive, wear matching crazy socks with me, and humor me with dad jokes throughout my sessions, turning the unbearable treatment into something fun that I looked forward to. His kindness and willingness to listen showed me the effect that healthcare professionals can have on their patients. He inspires me to become a healthcare worker and touch the lives of patients, similar to how he did with me.

Through countless physical therapy and rigorous dance training, I was able to, step by step, regain my talents and shine on the stage I once loved. Performing my Arangetram – a four-hour dance graduation – was the day I realized that EDS would not take away anything else from me.

Battling a chronic illness each day is already a huge struggle, but the constant dismissal and lack of understanding from family, friends, peers, doctors, teachers, and other individuals only burdens this. On the outside, I look healthy, immersing myself in school and extracurriculars, and my struggles were dismissed because I did not fit the disabled stereotype. Many of my teachers contested the necessity of my accommodations and my excessive absences, sometimes publically in front of my peers. My peers would spread rumors about the fabrication of my illness.

Although these experiences significantly impacted me, the most impactful was my treatment in the medical field. Like most people with chronic pain, I was constantly dismissed. My pediatrician, the person who was supposed to be the center of my care, told me my pain was a manifestation of a mental illness and failed to understand me as her patient, leading to her dismissing me as a patient. Instead, my father, who has no relation to the medical field, found me specialists and referrals, and he fought for my answers.

While these experiences were devastating, they have helped me grow as a person and inspired me to spread education about my disability since ignorance tended to be the root cause of these issues. Along with the physical manifestations, EDS destroyed my mental health in the beginning, especially with the isolation that comes with battling a chronic illness. However, I was able to find my own community of people worldwide who shared similar stories and empowered me. These online sources of support have been integral to the progress of my journey.

At USC, I am studying Health and Human Sciences: Sociology of Health. I aspire to become a physician one day and turn my experiences into meaningful change. I want to continue to be an advocate for invisible disabilities. Last year, I spoke about my EDS journey in a TEDx Talk, and I was also invited to speak at an MIT engineering conference about empathy for disabilities. I want to continue to use my story to raise awareness and increase empathy for invisible disabilities and make this world more equitable for disabled individuals.

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