My Chronic Illness Doesn’t Define Me – How I Conquer It Does

As part of our We Root for Every Body campaign, we want to celebrate all the ways students live well on campus. Below is a post anonymously written by a UW-Madison student about their experience. If you have a story you’d like to share, please email marketing@recwell.wisc.edu.

Some students view the UW-Madison campus as an adventure; I view it as an obstacle course. I was 17 when I called my dad, dripping with sweat and gasping for air on the side of the road. I had been on a long run, and for the first time in my life, I knew I couldn’t make it home. I had plans to move to Madison a month later to start my freshman year of college. Not knowing what my body had planned, I went, and excitedly started my new journey as a Badger. As the weeks went on, my body quickly became my enemy. As my symptoms worsened, I could no longer climb Bascom Hill or Linden Drive and searched for any elevator or bus I could find in order to get to class. As I quickly learned, some buildings and lecture halls on campus are hard to get into no matter what. Eventually getting to class became too much.

As a resident of the dorms I kept a chair in the communal shower room so that I wouldn’t pass out in the shower. By Thanksgiving, my days became centered on finding the strength to get up to go to the bathroom. It was scary, especially for a college freshman away from home for the first time.

I passed in and out of the hospital and clinic in pursuit of a diagnosis, but it wasn’t until Winter Break that year that I learned what was wrong: I had POTS, a condition that affects the nervous system, heart, and vascular system. Though POTS is not fatal, I have seen quality of life comparisons between POTS patients and congestive heart failure patients, and there is no known decisive cure.

I had been an endurance athlete all through high school, and prior to all of this, I was looking to continue training in college. Exercise was so much of who I was; when I got sick I felt like I had lost my identity. And, I was losing my educational goals. When I realized I needed to take time away from UW-Madison to learn my new normal, the first question I thought to myself was, “now what?”

I didn’t expect the mental health challenges that would come with my diagnosis. As my body composition changed, I had to restructure my identity because I no longer felt “good” enough or “fast” enough to keep up with my peers. I experienced a new anxiety and depression, as I had to figure out who this new me was and if I could return to college and work. When I eventually returned to campus, I learned to let go of perfection, and instead focus on what would make my body and mind feel nurtured and loved.

Almost a decade later, I am a graduate student on campus. Bascom Hill still feels like an enemy, but rather than avoiding it, I climb it slowly. Sometimes I’m light-headed and out of breath as I walk into class, but doctors have taught me that it’s okay and part of my experience. I’ve learned that UW-Madison may feel like an obstacle course, but overcoming obstacles makes you resilient.

Over the course of the past decade, I’ve learned to put my body first no matter what. I’ve learned to be assertive and advocate for myself in school, work, and health care settings. I’ve learned to listen to my body and to know when too much is too much. I rest when I need to rest and I ask for help when I need it. I’ve learned that a difficult day symptom-wise does not have to be a bad day. I’ve learned to take care of my mental health. And, I’ve learned to let nobody (and no hill) stand in my way.

Most importantly, I have learned I am not alone. There are incredible resources and social circles that make this giant campus feel much smaller and more accessible. There have been times when I questioned if I could finish my education, but there are organizations like the McBurney Center and Rec Well that make student life with a disability much easier.

Today I am working towards half a mile instead of 26.2. My mile time has increased significantly over the years, but so has my sense of flexibility and self-love. I have learned to love my body for what it can do rather than focusing on what it can’t. I am a meditator, I am an intramural athlete, I am purposefully imperfect, I am strong, and I am an Active Badger.

If you met me on the street today, you would probably never know that I have POTS. Students all over campus have invisible disabilities or internal struggles that may not be apparent to the outside world. If I could make one request to UW-Madison community members, it would be to be mindful of the fact that every student has a unique identity and experience on this campus and it may be visible or invisible to others. You cannot know a person’s experience unless you live life in their shoes. You’ll get the most out of your UW-Madison experience if you’re open to constantly learning and changing your understanding of the world by engaging with others.

Every person’s unique experience matters. Those unique experiences and diverse backgrounds are what make every body in our student body worth celebrating.