Alicia's Story

Patient Story

When I was diagnosed with IBD in 2004 I had only just briefly began to navigate my own sexuality. The summer I was diagnosed with ulcerative colitis was right before I was meant to start high school. I ended up starting with a 6 month delay due to complications that resulted in emergent surgery and a hefty rehabilitation period. Not only did I have to navigate a shiny new diagnosis and an ostomy bag at the age of 14, but I was also wading through the confusion about my sexuality on top of that.

I was labeled as the “sick girl” by my peers before I had even started school. News of my late start and the speculation as to why spread around the school like wildfire. Thankfully, and to my surprise, the “label” was mere curiosity and my class was actually understanding, inquisitive about my disease, helpful and thoughtful.

At 17, after toying with the idea that I was bisexual, I came out as a lesbian. I had just finished up with my J-pouch series and was starting to feel more “me” after having spent ages 14-17 having surgery and recovering on every break I had. My experience in high school was much different than my peers and I often felt like an outsider, navigating things most people around me could never understand.

I had known something was different about me at an early age when liking boy band artists and having crushes on movie characters was not as natural as it seemed to be for my friends. Talking about boys and dating was not as comfortable for me and initially I thought it was because of my discomfort in my body and the anxieties that come with revealing a chronic illness to a partner. However, I soon realized that it was much more than that – in fact, it was a combination of accepting my sexuality as well as my diagnosis and how those could impact each other.

Now that I have had several years to look back on my diagnosis and its impact on my sexuality, it has dawned on me that I came out not only once, but twice and continue to have to do so now. I have to come out regularly about my diagnosis and sexuality (if it is a safe place to do so) to colleagues or new friends to ensure that the environment is best suited for my multiple disabilities and is somewhere I can express myself freely. I have to come out about my sexuality to doctors to ensure that my care team can best help and support me. Sometimes the conversation goes extremely fluid and other times it still feels like I am juggling the weight of two very heavy and different labels and the unfortunate stigma that still exists in our society. Still, I come out regularly, because I am committed to working to shift the conversation surrounding sexuality and identity in the chronic illness community. It is extremely important that our voices are heard and acknowledged to change the future of healthcare.