how to explain to family and friends about chronic illness

by Toni Bernhard, JD

In the summer of 2001, I was preparing to begin my 19th year on the faculty of U.C. Davis School of Law. Then I got sick with what the doctors thought was an acute viral infection. I have yet to recover.

Being diagnosed with a chronic illness or condition can take a toll on your relationships, partly because all of the affected parties are confused and scrambling to adjust to this drastic and unexpected change in your daily life. It’s a crisis—for you and for those who are close to you.

Here are four tips to help you communicate more skillfully with loved ones when chronic illness becomes an inescapable part of your life.

1. Get help from a neutral third party. Often the best way to educate family and close friends about your diagnosis is to use a third party source because it takes the emotional component out of the equation. There are online organizations and associations devoted to every chronic illness or condition. Once you find them, you can forward links or print out pages for loved ones to read. If you have a book about your illness, photocopy the chapters that cover what you’d like your loved ones to know about your new life. (I did this for my close friends, attaching a short explanatory note to two chapters that I copied.)

Write a letter. If loved ones are not being supportive even after you’ve tried to educate them about your illness, write a letter to them. Describe what your day is like now, and express how you feel about this unexpected change in your life. A friend of mine wrote a letter like this to her mother when, despite their many conversations about her illness, her mother persisted in saying things like, “If you’d just get up off the couch and go out and exercise, you’ll be fine.” The letter transformed their relationship. Now her mother is one of her main sources of support.

Find non-illness related subjects to talk about. I had to learn how talk to others as a person with a chronic illness. At first, I assumed my family and close friends would want to know everything about my illness. After each doctor’s visit, I’d send them a long email describing the appointment in detail, medical jargon included. I’d get back a supportive sentence or two. It took several years for me to realize that my relationship with them would be more enjoyable and richer if I didn’t always talk about my illness. Now I ask about their lives and talk about new interests that I’ve developed. It provides all of us with a much needed respite from thinking about my illness all the time.

In the end…accept their limitations. Some family and close friends may never accept this change in your life. Try to recognize that this inability to accept you as you are now is about them, not you. Your medical condition may trigger their own fears about illness and mortality. You can’t always fix how others think of you or treat you, but you can protect yourself from allowing their lack of understanding to exacerbate your symptoms. The best way to protect yourself is to cultivate compassion for them. If you can learn to wish them well despite their inability to support you, you can free yourself from the mental suffering that arises from your desire for them to be different than they are. The physical suffering that accompanies chronic illness is difficult enough without adding mental suffering to it.

Everyone (including yourself) needs time to let this life-changing circumstance sink in. Hopefully, these four tips will make the road to acceptance less stressful.

Toni Bernhard was a law professor at the University of California—Davis, serving six years as the law school’s dean of students. She is the author of How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers and can be found online at HowToBeSick.com.