Sofia: In My Own Words
February 24, 2025
“You don’t look sick.” Children’s Hospital Colorado patient ambassador, Sofia, has heard this countless times, but her reality is far more complex. In her own words, she shares her experience with chronic pain, multiple rare diseases and how she found hope at Children’s Colorado.
For as long as 19-year-old Sofia can remember, eating has made her stomach hurt. Eventually, she was diagnosed with gastroparesis, a condition in which the stomach doesn’t empty properly. Sofia was also diagnosed with a form of disordered eating called avoidant/ restrictive food intake disorder (ARFID), which stemmed from the terrible pain she experienced every time she ate. In 2022, Sofia’s weight was so low that she was admitted to Children’s Colorado. That’s when specialists in the hospital’s Pediatric Neurology Program discovered that Sofia had several other conditions, including postural orthostatic tachycardia syndrome (POTS), a blood circulation disorder, along with a very rare hypermobile connective tissue disorder, which affects every system in Sofia’s body. Sofia began working with the hospital’s Chronic Pain Management Clinic; addressing the socio-emotional aspects of her condition; and working through the medical trauma she has experienced. Here is her story in her own words:
Most of the time, no one can tell I’m in pain just by looking at me. “You don’t look sick,” as the narrative usually goes, implying that pain and fatigue is something visible or easily detectable, which they just aren’t. In many ways, I have become an expert at masking my suffering. For years, I’ve learned to smile through the pain, to push through the fatigue, and to keep on moving even when my body is begging me to stop. I’ve perfected the art of appearing “normal,” of presenting myself as someone who is healthy and capable, even when I am struggling. It’s a survival mechanism, a way to avoid judgment or unnecessary questions, and a way to try and live a semblance of a life that others take for granted. It is hard to explain that while I may look healthy, there’s a constant undercurrent of discomfort that I carry with me at all times. My daily routine consists of meds, blood pressure and blood sugar checks, feeds, more medications, procedures…repeat.
Before becoming an ambassador for Children’s Hospital Colorado, no one knew the mountains I conquered every day. No one would have come close to the conclusion that I was taking 20 pills a day, spent more time in the doctor’s office than my own home, and that my liver was shutting down, making me one of the sickest kids my pediatrician had ever seen.
Even to this day, I walk into a college lecture, and my classmates and professor are oblivious to the fact that an hour prior I had been poked and prodded with 15 needles as a last-ditch effort to fix my migraines or that two days ago I was in the ER with a blood sugar that would have sent a normal person into a coma. This is what life looks like when you are living with multiple rare diseases that have no cure.
Sofia
Yet the world keeps spinning; life doesn’t just stop because you are chronically ill. So, despite it all, I am working towards my dream job of becoming a pediatric nurse practitioner and helping kids just like me! If I can help even one child and hold their hands through one of the toughest moments in their lives, then it will all be worth it. I am passionate about advocating for all pediatric patients and making sure that they know that they will always have me in their corner advocating for them.
The last four years have been incredibly difficult and will have a lasting impact on me for the rest of my life, but I can’t imagine being treated at any other hospital than Children’s Colorado. I have met so many adolescents who are going through tremendous challenges just like me, and we have bonded over what can be said is shared trauma. We are there for each other and understand each other on a whole different level that you couldn’t find anywhere else. I have created a family here, from my life saving care team to my friends at the Children’s Hospital Colorado Foundation, I am surrounded by people who care so much. A sense of calm washes over me when I walk through the doors because I have created a second home here, and my life is so incredibly rooted in this place. Yet I wouldn’t change it for the world.