My Illness Narrative: the Autopathography Project

(If you want this in a printable form, please email D.J. Elpern djelpern@gmail.com)

You may have a complex health problem that doctors have not solved. When you enter the new doctor’s office, a perky young person asks who referred you and then requests your insurance cards. Next, there are numerous forms to fill out. Then, you are seen by an assistant who records your weight, blood pressure, pulse, and even the oxygen saturation from a fingertip. Finally, the physician or his “extender” sees you for 10 – 15 minutes, at least half of which time he is focused on your electronic medical record. After this ritual, what does the medical professional know about you are and what makes you tick (or sick)?

People with medical problems can begin to understand and deal with their difficulties by taking the time to record their stories. Illness narratives can document how the patient understands what she is experiencing. Our bodies speak eloquently in pain and other symptoms, but their languages are preverbal, idiosyncratic. The patient is the best one to translate her symptoms into whatever language she speaks.

Today, the clinic chart tells your story. This is a sadly inadequate description of who you are and what you are experiencing. You should be diagnosed and treated based on the story you tell, not from words and data collected by harried assistants or physicians who spend only a few minutes with you in an office or hospital setting. Ideally, you should be allowed to speak without interruption about yourself; but this rarely happens. The Illness Narrative is an opportunity to do so.

Industrial health care has muted the patient’s voice. We are not simply machines to be repaired by technicians. By taking the time to compose your narrative, you will give your health care provider a better chance to understand your problem, how it developed, how it affects you, and how to work with you towards resolution. This approach can lead to more targeted and successful treatment.

Who Should Do This?

Anyone can compose an illness narrative. For simple problems it may not be necessary. If you have the time or interest, your illness narrative will help your health care providers to diagnose or treat you more successfully…

How to Start:
Start at the beginning. For some problems, it may be important to record your family history and mention traumatic or painful events you have experienced (for other disorders, this is not relevant). Be as honest as you are comfortable being; and take your time.

List all the physicians and other providers (chiropractors, acupuncturists, etc.) you have seen for this and all medications you have been on for anything including over-the-counter medications, vitamins and supplements. Let the reader know your fears about the problem (if you have any).

This is an opportunity to tell your story to healthcare professionals. “The content of [your illness narrative] offers valuable insights: for the teller the recording of her story is enlightening. It is also a guide to others, and will provide your caregivers with an understanding of your illness experience.”*

* Arthur Frank. The Wounded Storyteller (1995)

Illness Narrative Checklist
To be effective, your Illness Narrative should include the following sections:

☐Background: A short biosketch including your age, profession and other significant data. Family history, if relevant. Travel history and dates.

☐What is your main concern in a sentence or two.

☐Describe any adverse childhood experiences or traumatic events you may have had during your life along with ages.

☐Chronicle of Your Complaint, An in-depth account of your current problem(s).

☐Providers Consulted: List all the health care professionals you have seen including non-M.D. practitioners. You may want to mention what their diagnosis was.

☐Tests: List of recent blood tests, xrays, biopsies and other studies

☐Treatments: List of all medications you have recently taken. Also list therapies such as acupuncture, chiropractic, physical therapy, surgeries and others.

☐Your thoughts as to what is going on. It’s important to let your providers know what you think.

☐ Miscellaneous (random) views and feelings. How do you feel about what is going on? What matters most to you