Misdiagnosis and Communicating with your Healthcare Providers

Written by Ty Redler, National Council of College Leaders alumnus

Misdiagnosis: a period throughout a patient’s medical journey where the patient can be confused, scared, unheard, misunderstood, and lost. Before I was diagnosed, I was misdiagnosed with seemingly everything that is a common misdiagnosis for Crohn’s disease. I was diagnosed with Celiac disease, IBS, pancreatitis, and an eating disorder. During this time, I remember saying to my parents, “This just doesn’t feel right.” I didn’t think my doctors were looking at me as if I was a complex puzzle, but more so a simple set of Lincoln logs.

I pursued my doctors constantly with questions regarding my treatments. After not feeling satisfied with the diagnosis the doctors had provided me, I went to seek more opinions. I traveled across the country to ensure the doctors’ decisions lined up and that everyone, including myself, was satisfied with the treatment plan put in place for my newly diagnosed Crohn’s disease.

Before I started really thinking about my doctor’s choices, I was allowing them to drive the ship that was my treatment plan. I didn’t put much time in thinking past the words and orders the doctors wrote, but when I realized my treatment wasn’t working, I started to become more of an advocate for myself. I realized that this ship needed more than one captain. At that point I remember thinking, “I have a disease that I needed to be the driver of and voice for.”

Being misdiagnosed can be daunting and troubling; however, there is always light at the end of the tunnel. If you are ever feeling weary of your doctor’s decisions, ask questions and seek second, third, or as many opinions needed until you feel satisfied with your treatment plan. I also recommend looking into all the resources available to you - education platforms and support groups can help educate you on a topic that might help steer your treatment. Another tip to help get through misdiagnosis is having a good support network to bounce your thoughts off of. Sometimes it is best to bring in a loved one who has an outside opinion to help you choose the right treatment for you. Lastly, try to keep your head up and to stay positive. As hard as being misdiagnosed can be, keeping a strong head and not backing down will help you move your treatment in the right direction.