Finding the right treatment and trying different combinations of medicines can feel like a rollercoaster, and I understand it’s tiring. Sometimes you begin feeling better and hopeful, only to be let down by a flare up a week later. Hang in there. Scientists have been working hard to understand inflammatory bowel disease and ways to treat it. With new developments in medicine, your options will expand and with the help of your doctor, you will find a treatment that works for you. One day you will be playing on the varsity field hockey team and traveling to New Zealand!
Talking about your illness with friends or classmates feels strange, and I know you prefer not to tell anyone. I know you don’t want to call attention to yourself, and it’s stressful to have to tell teachers when you need to leave class. It seems like nobody would understand, that they would think you’re weird and even contagious. It feels like you’re the only one, like it’s taboo to have a disease. Let me share a little secret: when it comes to health conditions, almost everyone’s got something they’re dealing with. Not everyone has an autoimmune disease, but as you get older, your peers will relate to you with their own health-related challenges and it will get easier to discuss openly. Public awareness and understanding of both IBD and autoimmune disease will increase as you get older, and this too, will help you connect with others who are going through similar difficult experiences.
Now here’s the important part, so pay close attention: as you get older, the two most valuable lessons for you to learn will be self-acceptance and self-care. Right now, you may want to leave the understanding of the disease and the decision-making to your parents and to ignore the illness when you’re feeling good. But Crohn’s disease will be with you, and to love your whole self, you must accept it as a part of you. The challenges, the fear, the frustration will shape you into the kind of person who can move across the country from Boston to San Francisco without knowing anyone, the kind of person who can choose to change career paths and follow their creative passion.