Guide for Medical Providers

Unless you were a medical student at Thomas Jefferson University in 2015 when my (now-doctor) twin sister and I lectured on how doctors should engage with patients struggling with rare and chronic diseases, your medical training probably lacked guidance on what to do with patients like me. Insurance and other issues in the medical landscape certainly don’t help you have the time to show up for us, even though you want to. My hope is to provide a snippet of guidelines to help you better understand patients like me.

While each patient is unique, there’s something we all have in common: we are all human beings who want to be treated with respect and compassion. Likewise, while each medical provider is unique, I believe there is something you all share in common: you want us to trust you.

If you want us to trust you, you must show us that you understand that we know our bodies best. Rare diseases have less established knowledge for you to draw on, and patients with similar disorders can present differently from each other and from cases in the literature. We need you to show us that you believe what we’re telling you, as the people living in our own bodies 24 hours a day, even if you don’t understand it or don’t yet have an explanation for it. Below are some messages and guidelines that I hope will be helpful in navigating your appointments with your patients.