Don’t Forget Us! Young Adults with Invisible Illness – Experts by Experience
My brain swirled as I waited on the surgery table for my colectomy, the removal of the entire large intestine. I told the anesthesiologist I was ready for him to start the sedation, knowing this is an irreversible surgery, but also knowing I would come out with a new life. I was 13. I thought to myself that for the first time in years, I could go back to school full-time. I could go on a walk in my neighborhood—I would be “normal.” What I didn’t expect was the numerous challenges in reentering society.
I was diagnosed with ulcerative colitis at age six. Ulcerative colitis is a chronic inflammatory bowel disease that is said to affect primarily the large intestine, but in truth, it affects the entire body—the joints, the mouth, other organs. In young adults, it can create emotional, professional, and social barriers. There is limited research about this, but it is not a debated fact among young patients with ulcerative colitis and other invisible chronic diseases.
Realizing the barriers that young adults with chronic illness face, I created the Health Advocacy Summit, (HAS) an advocacy event for young adults with chronic diseases. With Summits in nearly four states, this organization has become more than a support system or a fundraising organization—it is a direct tool for empowerment. HAS is not only connecting young adults with similar conditions to each other but also hosts sessions that address different aspects and needs of a chronic disease.
There is a definite need for more resources to support the community of younger patients who face chronic illness. Further, there needs to be a fundamental change in the way young adult patients are treated by the medical model. When I was diagnosed, my care was rudimentary. I would only see my pediatric gastroenterologist and the occasional specialist for other related symptoms. There was no holistic care, no addressing the psychosocial aspects of chronic disease, especially at a developmental adolescent phase.
Some medical facilities do have a psychologist integrated within the specialties, such as gastroenterology, which is of incredible value in early intervention therapy. I am hopeful that other hospital systems will become focused on treating the patient as a whole, by including specialists such as psychologists within their practice.
Nearly 15 years after my diagnosis, I live with a J-pouch, which is my small intestine functioning as my large intestine. I’m not yet what one would classify as healthy, and I’m still seeking effective treatment while hoping for more research. But I feel incredible! I know that there is a wide community of other young adults with invisible illnesses, and given an empowered voice and more recognition, this community can transform the healthcare system to be even more patient-centered—and more effective in not treating the patient as a number, but as a person.
Experts by Experience is a collaboration between Inspire and Mayo Clinic Connect, online support communities for patients and caregivers. By sharing their stories, patients and caregivers awaken, inform, and strengthen the capacity to partner in their care. The stories also help clinicians and non-medical professionals in health care implement patient-informed practices in their interactions and communications, by uncovering opportunities for quality improvement. The series showcases the value of shared experiences and features contributors from around the globe.
About the author: Sneha Dave is a junior at Indiana University. At age 6, she was diagnosed with ulcerative colitis, which she has successfully battled with the help of several major surgeries. She founded the Health Advocacy Summit, an advocacy event to empower young adults with chronic diseases, in four states. She also created the Crohn's and Colitis Young Adults Network a nonprofit organization to connect young adults with inflammatory bowel diseases around the world. Sneha is a part of the Pfizer advisory board, an Eli Lilly consultant, and she advocates with the United Nations for the third sustainable development goal, good health, and wellbeing. Find her on Twitter at @snehadave98.