I Spent My Childhood At The Doctors—Now I Help Others Advocate For Themselves As A Nurse

At the age of five, I was diagnosed with transverse myelitis, a rare neurological condition that causes inflammation of the spinal cord. From this time, I remember doctor's offices, poking and prodding, and never being allowed to just be a child. But as a kid, you kind of adapt.

As a teenager, you're already going through your hormonal changes on the inside, and everything on the outside is exacerbated. Nobody wants to have to miss out on school because they have to go to a doctor's office or be bullied because of a disability.

But the hardest part was how it impacted my independence. Everyone around me was always telling me to be careful or not to do something. I felt like I was a child first learning how to walk. 

As a kid, I wanted to be a healthcare lawyer and do malpractice law. I even told all my doctors that I was going to come back and sue them for all the pain they put me through. At one of my graduations, I was signed out of the hospital for the day, and my doctor and nurse practitioner came to make sure I was okay. In my memory book, they wrote, “please, anything but a lawyer.” 

I then realized that suing for pain didn’t make the pain go away. I’d have to cure the pain of others instead.

By the end of my undergrad, I’d come to believe that the problem with the medical model is that it looks at people as though they are a disease process. I disagreed with the way the system sees people as just a number. But I knew that it wasn’t so cut-and-dried in nursing, because nursing tends to believe in the holistic, whole-picture view of the person.

I went through 76 interviews for clinical patient care placement, and I was rejected from all of them. I had other job interviews for case management and clerking, and I would get desk jobs. But when it came down to clinical care, I was met with bias. It always came down to, “but in an emergency, how will you do XYZ?”

Since hospitals had never had someone with a disability in the room besides patients, they couldn’t imagine what it would look like. As human beings, we tend to use ourselves as a comparison model. If you don't think you can do something, you doubt that someone else could do it.

But people with disabilities have lived with disabilities, and they know what they can and can’t do. They don't want to be embarrassed. They don't want to harm anyone else or get hurt.

I believe my chronic illness actually equips me in certain ways. The fact that my patient history is as long as it is gives me a different perspective. It helps me be able to talk patients through their most vulnerable times because I've been there. I've been the patient on the table lying naked in front of a room full of strangers before I'm put out for surgery, thinking all of the worst things in the world. 

Right now, I'm a school nurse consultant, and I consult for disability health care. Being a nurse during the height of the COVID-19 pandemic in New York City, (editors note: and New York State’s first nurse to use a wheelchair, at that) showed me that our healthcare systems are not prepared to take care of people with disabilities. We are not prepared to take care of anyone who is even remotely outside of what we consider the "societal norm."

Even someone who may be bigger and can't fit into a CT scan or MRI... what happens to their treatments or their diagnoses? A lot of people who use mobility devices are overweight, and then doctors will automatically deem them non-compliant or deem their disability weight-related. There's also this bias that healthcare workers have to be healthy in order to take care of people. And I know that's not true either.

For anyone dealing with a chronic illness diagnosis right now, know that you don't have to accept the terms of the diagnosis or the limits that are put on you. But you do have to accept that you've been given the diagnosis. If you fight it, that’s going to exhaust you quicker. 

And then your next choice is to include your family. Your family is not in your mind. As much as they're there in the room with you, they don’t know what you’re going through mentally. So include them in that.