“I am not my chronic pain”

In my second month of college my boyfriend at the time and I took a taxi to the ER — my pain was getting too high. As he loaded my wheelchair into the car, the taxi driver looked at me and said, “Do you really need that?”

It’s a repeat of so many comments I have learned to ignore or absorb — the classic “well you don’t look sick” to the more overt “so what exactly is wrong with you?” When I explain that the process of diagnosis and treatment is still underway between me and my doctors, I can see a slight shadow fall over the eyes of my friends and acquaintances. Chronic pain is hard and confusing for those who experience it and those who don’t — for many of my friends, the sudden transition in my life from an active lifestyle of rock climbing and hiking to being unable to stand was a surprise and a shock. It was for me as well.

Unlike some people with disabling health conditions, I look physically “normal”. Most of my medical test results also present as normal. But like many people around the world, I experience chronic pain in several areas of my body that can be crippling. It can be hard to type, handwrite, stand, or walk. Simple tasks like packing a suitcase or cleaning my room have to be divided up into smaller tasks with rest breaks in between. It took me about two and half years to find the right doctor, and during that time I saw many doctors who recommended that I enter therapy, take up meditation, or just learn how to “de-stress”. ­ Many of these psychological factors have helped me improve my status, but at the time it seemed like they were telling me that I was making the whole thing up, that it was all in my head.

These days I walk much more and am beginning to regain some of the abilities I lost three years ago when my condition started. I use a wheelchair less, and get fewer comments about how I must be “faking it”. I count myself extremely lucky — a lot of people don’t see significant improvement from chronic pain. The resources and support of my family and my friends at Princeton have made it possible for me to do things I thought would never happen again. I am able to travel internationally, pursue my studies, and most importantly, live an enjoyable life.

Invisible medical conditions offer a perspective difficult to gain elsewhere. I’ve learned not to take people or things at face value, and never to discount the experiences or challenges faced by another person. Now I try not to make snap judgments. I try to be as compassionate as I can be. In some ways, I wish that my chronic pain had never started—but in other ways, I am grateful that it did.