More than my scars: My experience as a woman living with UC

I was diagnosed with ulcerative colitis when I was 12 years old. I still remember the day clearly. We were living in Beverly Hills, and when I saw blood, I thought I had gotten my period. I was excited and terrified at the same time.

I called my mom, who was in the room next door. When she came in, she realized the blood was not coming from where either of us had expected. I remember the confusion on her face, followed by sadness when she understood that something was wrong.

I started medication that helped control my disease, and a few years later, I did eventually get my period. It came after my younger sister got hers, which, at the time, made me feel like I was somehow less of a woman. I now understand that womanhood is not defined by when you get your period, what your body looks like, or whether your body works the way you expected it to. But at that age, it was difficult not to compare myself to the girls around me.

It was not until I became a college student-athlete at Union College that ulcerative colitis took over nearly every part of my life. It began interrupting milestones and experiences I was not ready to give up.

Living with UC meant constantly battling my energy levels. It was frustrating when I could not keep up with my friends, teammates, or other athletes. I was also always looking for the nearest bathroom. I knew where every bathroom was on campus, in restaurants, and almost anywhere else I went. I cannot count the number of times I had to say goodbye to a favorite pair of underwear because of an unexpected accident.

In 2010, I went to the emergency room and had bloodwork done. My mom was told that I had lost nearly half of my blood volume. Unsurprisingly, what followed was not easy.

I left my sophomore year one term early and spent about a month at Cedars-Sinai receiving treatment, including infusions. During that time, I also developed a blood clot and MRSA. Despite everything, I was determined to return to school in time for my junior year - and I did.

When I returned, my sorority sisters kept telling me how amazing my eyebrows looked. I smiled and told them it was probably because of the immense amount of steroids I was taking. Sometimes humor was the easiest way to make an overwhelming situation feel a little more manageable.

Unfortunately, the treatment did not hold.

In the fall of 2010, I nearly fainted in my sorority house. My mom made her way from Los Angeles to upstate New York in record time. She took me to a hotel room and told me we needed to go to the emergency room. I knew that going to the ER could lead to a serious outcome, and I was terrified, but it was necessary.

Even then, I remember worrying about how I looked. I was concerned about my makeup, and my sister was applying mascara and brushing my hair while I drifted in and out of consciousness. Looking back, it seems almost funny, but I think focusing on my appearance gave me one small thing I could control when everything else felt completely out of my hands.

I was taken into surgery and woke up confused and in pain. There was a large bulge on my stomach. I now had an ostomy bag.

The ostomy became both my best friend and my worst enemy. It saved my life, but it also changed the way I saw my body. I lived with an ostomy throughout the remainder of college, determined not to let my disease stop me from graduating on time or continuing to live the life I had planned.

My ostomy could be especially loud during my small art history classes, which was not exactly ideal. But I eventually realized that if someone heard my ostomy rumbling and thought less of me because of it, they were not someone I wanted in my orbit anyway.

Living with this disease has a way of showing you who your true friends are. It also teaches you the importance of boundaries - knowing when to push yourself and when it is okay to simply say, “No, I can’t make it.”

Over the next several years, I underwent approximately five surgeries, including procedures related to the removal of my colon and the creation and reversal of my J-pouch, as well as two surgeries for bowel obstructions. During that same period, I helped start an equestrian team with my best friend, covered a live event featuring President Obama at a GE plant alongside national news outlets, graduated on time, and even made the Dean’s List.

When I look back at photographs from that period of my life, I am reminded of what I am capable of. My body reached its limits many times, but I continued to set goals and accomplish things I once worried my disease would take away from me.

That determination continued into my career. I have had the opportunity to work at incredible companies, including WME, Airbnb, Gap Inc., Amazon, and Selkirk Sport. Each experience challenged me, helped me grow, and reminded me that I could build a meaningful and successful career while also managing a chronic illness.

IBD has required me to plan ahead, understand my limits, and sometimes work through exhaustion or discomfort that the people around me could not see. At the same time, it has made me more empathetic, resilient, and aware that everyone may be carrying something beneath the surface.

Living with IBD as a woman has also challenged my ability to feel vulnerable, especially in romantic relationships. For many years, I did not feel sexy or comfortable in my own body. I had scars across my stomach, anxiety about accidents, and a body that often felt unpredictable.

Women already face so much pressure surrounding beauty, confidence, and intimacy. Adding surgical scars, an ostomy, a J-pouch, and the possibility of an accident in bed does not make those things any easier.

It was not until I met my now-fiancé, Taylor, that I truly began to feel comfortable being vulnerable, naked, and confident. He loves me through the good moments and the truly shitty ones - literally. I feel incredibly lucky to have found that person.

Taylor is a member of the U.S. SailGP Team, and his career has taken us to incredible places around the world. Together, we have built a beautiful and adventurous life filled with travel, new cities, sailing events, and memories I once worried my disease might prevent me from experiencing.

This fall, we are getting married, and I feel incredibly grateful for the life we are building together. There was a time when simply returning to college, my job and even waking up in the morning felt uncertain. Now, I am preparing to walk down the aisle, continue growing my career, give back to this community and keep traveling the world with the person I love.

These moments mean even more because I know how hard I fought to be here for them.

I am sharing my story because I want other people living with IBD to know that they are not alone and that they are stronger than they may realize.

When I was going through my surgeries, I did not have anyone who truly understood what I was experiencing. Over the years, I have learned how powerful it can be to speak openly about this disease. When one person shares their story, it can make someone else feel safer sharing theirs.

There is currently no cure for ulcerative colitis. Some days, living with this disease can feel like a fight. But it is a fight for the life I want to live, the people I love, and the experiences I still want to have.

Living with IBD requires preparation, community, boundaries, extra underwear, a sense of humor, and, most importantly, love for yourself.

My disease has shaped me, but it does not define me. My scars are not signs that my body failed me. They are reminders that I survived - and that I still have so much life left to live.