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 initially 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 the reality of your daily life. It’s a crisis – for you and for those who are close to you. For me, it was what I can only describe as a shock – not just to my body, but to my mind – as I was forced to trade a busy and satisfying professional career for the isolation of my bedroom. For my loved ones (which includes family and close friends), there was frustration over their inability to make me better. For all of us, there was denial about what was happening, uncertainty and fear about the future, and disappointment over the change in my ability to participate in activities with them.
Both you and your loved ones are likely to go through the four stages of grief that many erroneously believe only apply when a loved one dies: denial, anger, sadness, and then finally, acceptance. To complicate matters, they may not understand what you’re going through physically — for example, you have to be in pain to really know pain. As a result, they may underestimate the degree of your new limitations and may even question the validity of your diagnosis.
All of these stresses make communication more difficult. 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. A quick web search will yield a host of online organizations and associations devoted to your specific illness or condition. You can forward links or print out pages for them to read. If you have a book about your illness or condition, you can 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.
2. Write a letter. If loved ones are not being supportive even after you’ve tried to educate them about your illness or condition, write a letter to them. Ensure it is not an accusatory letter. As you write, use the word “I,” not the word “you.” Describe what your day-to-day life is like now, and express how you feel about this sudden and unexpected change to your life plan. A friend of mine who is chronically ill wrote a letter like this to her mother when, despite their many conversations about her new limitations, 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 and now her mother is one of her main sources of support.
3. Find non-illness related subjects to talk about. I was fortunate that my family and closest friends understood early on how sick I was. But I discovered over time that I still needed to learn how to talk to them, now as a person with a chronic illness. At first, I assumed they’d want to know everything about my illness. And so, after each visit to a new specialist, I’d send off a long email covering everything about the appointment in minute 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 and it has also enriched my relationship with all of them.
4. In the end…accept their limitations. Some family and close friends may never accept this change in your life. In other words, they won’t get beyond those first three stages of grief. 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, or they may not be able to accept the changes that simply must be made to your day-to-day life as a result of your altered health. 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. With time and patience, you and your loved ones, at least most of them, can reach that last stage of grief – acceptance. Hopefully, these four tips will make the road to that acceptance a less stressful and bumpy one.
Until forced to retire due to illness, Bernhard spent 22 years as a university law professor in California, which included six years as a dean of students. She had a longstanding Buddhist practice and loved traveling. Forced to learn to live a new life with a chronic illness, Bernhard decided to embark on the difficult journey of writing her new book, How to Be Sick, in order to help others with chronic illness and disabling conditions. Bernhard currently resides in Davis, CA with her husband, Tony, and their hound dog, Rusty. She has two grown children and two granddaughters. For more information, please visit www.HowtoBeSick.com.