Have you ever been alone in a crowded room?
By: Ruhi N.
Tags: Covid 19, Vulnerability, Disability, Chronic Illness

Have you ever been alone in a crowded room?

Till I was fifteen no one ever called me their best friend.

In school I was the teacher’s pet, the know-it-all, the only Indian kid in class — desperately trying to fit in and understand why the other kids didn’t want to hang out with me.

One of the few places I’ve always felt comfortable is the hospital. Even as a child, I knew all the nurses and doctors by name and they knew me. I remember everyone always being happy to see me, stopping in the hallway to say hello. I knew what to expect every time I went to the hospital. I knew how to find my way up to the pediatric floor, I knew where the food court was and where the pool where I took swim lessons was. Every hallway held a memory, because I grew up in the hospital, coming for appointments nearly weekly till I left for college. As a child, I didn’t realize this was unusual — all I knew was that the hospital was a good place.

As I grew up, that changed.

Instead of offering me the solace they did as a child, full of the friendly nurses and doctors that I loved, hospitals left me with more questions than answers. As my symptoms grew worse, I had so many doctors give up on me. Say “we don’t know what you have” and send me on my way. I live with uncertainty around painful symptoms which have never been diagnosed. I have spent weeks of my life on the phone with clinics and insurance companies, in waiting rooms and pharmacy lines, years navigating the healthcare, educational and disability rights landscape as a young woman of color in America. As an adult, every time I go to the hospital, I come back disappointed, dejected, betrayed.

As an elementary school student, I had a feeding tube to make sure I received enough nutrition every day. The public-school system didn’t want to take responsibility for my chronic illness and without my parents’ fierce advocacy, would have chosen to send me to special education classes, without considering what my needs as a student actually were.

As a middle school student, we ran the mile every Friday. I always finished last.

As a college student, I had to take a semester off in order to manage my health. I saw 30 specialists, had multiple procedures and was referred to a psychologist because it was easier to tell me my symptoms weren’t real than it was to confirm they were giving up on my case. It took six years to find a diagnosis.

Credit: https://tinyurl.com/yykxyqrd

This was the first time I had to consider that I had a disability.

Despite the fact that people with disabilities are the largest minority group in the United States, I grew up believing it was best to hide my limitations and focus only on my strengths. I thought that if anyone, personally or professionally, knew my vulnerabilities, they would not consider me able to contribute to a workplace or a relationship. I internalized that my limitations were a burden for others.

As a full-time employee, despite having reasonable accommodations as required by law in place, my boss constantly made snide remarks about how often I took sick leave. I became stressed and afraid to use my sick leave. At one point my boss told me “you should learn how to manage your disease.”

In another workplace I had an unforeseen health episode which prevented me from working for weeks. While I was trying to manage my health, I was forced to take unpaid sick leave.

In the last 7 years I have tried over 18 different medications, allopathic treatments, ayurvedic treatments, and making significant lifestyle changes.

I live every day with a degree of uncertainty. Uncertain whether I will feel well enough to make it through the day, the week, the project, the semester, the next hour. Some days I accomplish everything I planned to. Some days I can’t get out of bed. Some days it hurts to breathe. Some days I can’t make it up the stairs without gasping for breath. Some days my head is spinning so much all I can do is close my eyes and cry.

Credit: https://tinyurl.com/yykxyqrd

As a Masters in Public Health student, managing the challenges of a pandemic while being at high-risk for COVID-19, I have reflected how my firsthand experience as a disabled immigrant, student, woman of color and full-time employee fuels my passion for equity in public health. Navigating the inequities in the healthcare system have helped me empathize with others and become a better engaged public health practitioner.

I know what it is like to live with an invisible illness. I know what it is like to be able-bodied and disabled. I know what it is like to feel no control over how you feel hour to hour. I know what it is like to be dismissed by healthcare professionals. I know what it is like to be believed by healthcare professionals. I know what it is like to feel isolated, alone, and frustrated. I know what it is like to feel like a burden to others. I know what it is like to feel loved and supported. I know what it is like to feel like no one understands.

Chronic illness is a constant exercise in self-reflection and reminders that there is strength in vulnerability.