Many of us living with pain have experienced the challenge of no longer being able to see our familiar doctors. In my state of Rhode Island, along with those who are naturally retiring, many have also chosen to leave to receive the more reasonable pay that they deserve in a different state.

Whatever the reason, this leaves us searching for a new doctor. However, for those of us living with a chronic condition, this process can be extremely challenging. Our mission is to find a new doctor who is willing to take us on despite our complications. Chronic pain sure puts a monkey wrench into the journey of searching.

I live with Ehlers-Danlos syndrome, which is an incurable, painful, and complicated condition. Therefore, finding a doctor who is willing to add me to their practice is not so simple. When searching for a new physician, we must share the truth about our difficult journey, while also showing them that we are taking an active role in working to help ourselves.

I have found that since it is hard to find an EDS-knowledgeable doctor, I instead search for one who is willing to listen to me, believe in me, and trust me—one who is willing to learn with me, to search for ways to improve the quality of my life with my condition. Framing my search in this way helps me find a match that is supportive and fulfilling for me. While it can be difficult to establish a doctor-patient relationship when you have chronic pain, your journey may help pave the way for the next patient who is also struggling with your condition.

So what should you be prepared to share with a new doctor? I’ve found it helpful to bring the following:

• Medication list, including the dosage and date each was started
• Medication reaction list
• Any diagnoses you have been given, and the dates of diagnosis
• Dates and details of any body scans or imaging you’ve had done
• Dates and details of any surgeries or procedures you’ve had, and where they took place
• Insurance cards 
• Name and contact information of the pharmacy you use
• List of doctors who are presently working with you

I am sure you have times of frustration living with your condition. And, as in my case, it’s possible a doctor won’t be able to cure you. But I have found that developing a kind and caring relationship with my doctors has made my visits pleasant, and the compassion they have shown me makes a difference in my care. Listening, believing, and caring for me means the world, and I have worked with each provider to create this type of relationship. 

When you have found a good match with a provider who is willing to add you to their practice, consider, during your appointment, asking your doctor how they are doing. They tend to be initially shocked, but it brings on appreciation and a chance to get to know each other in a caring way that will help to nurture your relationship and mutual respect. 

May life be kind to you…

—by Ellen Lenox Smith

About the Author:

Ellen Lenox Smith has emerged as a leading voice for patients living with pain. Currently, Ellen serves as Co-Director of Medical Cannabis Advocacy for the U.S. Pain Foundation and is a member of its Board of Directors. She is also active with the EDS RI support group.

Prior to patient advocacy, Ellen was a longtime middle school social studies teacher. She has been married for 53 years and is the proud mother of four adult children and grandmother to five grandchildren. She also is the author of two books, an organic gardener, and was previously a master swimmer and high school swim coach.