Mariah Leach, 35, of Louisville, CO was diagnosed with rheumatoid arthritis (RA) in 2008 at the age of 25. Her experiences prompted her to become active in patient advocacy and education initiatives through organizations such as the Arthritis Foundation. Today she works to support individuals living with chronic illnesses, particularly women who are or want to become mothers. Her own experience and interviews of other RA patients inform the following “wish list” of things patients with RA want doctors to remember. (Please note some names have been changed to protect patient privacy.)
#1: Please remember where we are in our journey.
Being diagnosed with RA is a life-changing event for any patient, and it can take time—sometimes even years—to learn how to live with the diagnosis. For this reason, it can be especially helpful if you can remember where we are in our patient journey and make an effort to adjust your advice accordingly.
“I know I’m just one of many patients,” says Mandy Dokter, who has been living with RA for a year and a half, “but for me this is my one life. What might be typical for RA patients in general was still brand new and frightening for me when I was first diagnosed.”
If our doctors can respect where we are emotionally, it will help build trust, which is especially important for a lifelong disease where the doctor-patient relationship can last for many years. This can be as simple as quickly reviewing our charts and following up on the areas of concern from the previous appointment, so that we know you appreciate what we are going through.