Self-managing chronic disease

Are you living with a chronic health condition? Kate Lorig, RN, DrPH, is a professor emeritus and director of Stanford’s Patient Education Research Center. She created the Chronic Disease Self-Management Program, and BeWell recently asked her about her experience with chronic disease and how we can benefit from the learned wisdom of others.  

When it comes to our health, why do we have difficulty acting in our own best interest?

[Laughter] People do act in their own best interest — just not in what others might consider their best interest. They think, “I really like this TV program. Or, “My wife would give me so much grief if I changed my diet.” They like the way they live their lives and don’t want their whole world to change.

Is this why we are often non-compliant with doctor’s orders?

Doctor’s orders get in the way of life. A lot of what they prescribe is hard to integrate or feels punishing. A diagnosis can leave a person feeling devastated, frightened or immobilized. They can often only function in the way they have functioned their whole lives.

… meaning knowledge cannot always be put into action?

Exactly. I remember being told that I shouldn’t lift anything heavier than a teacup. I lived alone. This was not possible unless I was institutionalized. 

So this is a lived experience for you?

Yes. I have never not lived with a chronic condition. I was born with a rare hereditary disease and have accumulated more conditions as I’ve aged (hypertension, thyroid cancer). This is not the reason I am doing the work I do now, but it may be why I was drawn to the health field.

Tell us about your Chronic Disease Self-Management Program.

The program spans 15 hours over six weeks and is led predominantly by former participants or individuals who have otherwise lived with chronic illness. Offered at little or no cost, the program fills a real need and is successful with all types of participants. In the last three years, 47 states have received $37 million in federal grants to implement the program.  It has also been translated into 20 languages and is being used in 25 countries.

We live 99% of our lives outside of the health care system. What we do with that time largely determines our health outcomes. We never tell people what to do. We offer people 15-20 different tools and let people choose how to use them. 

Why is it important that most program leaders have personal experience with chronic illness?

I like to use the example of a woman who had cancer and lost her hair. Two months later she could not put her wig away. It was nearing Christmas and her husband insisted that she move the wig off the dresser. Instead of insisting on a certain behavior, other participants suggested that she move the wig to a different position on the dresser, change the hairstyle or hang Christmas balls from it. There is not a health professional in the world who would do that! She benefited from the learned wisdom of other people succeeding with the same problem. 

What words of advice would you offer someone who just learned they have a chronic condition?

Take a few deep breaths. Don’t panic. Feel sad, feel angry, feel whatever you feel. Write it all down, but don’t show it to anyone. Catch your breath. Write down your questions for your doctor. Start learning the skills you will need. Find other people like you. Remember that very seldom is it the end of the world; it actually might be an opportunity. And I am not being Polly Anna-ish here.

I would also tell them what not to do. Don’t read everything on the internet about your condition; it will scare you. Ask your doctor what you should read.

For someone who just received a devastating diagnosis, I recommend a lovely book, Aftershock, written by Jessie Gruman, PhD. 
Stanford Coordinated Care (SCC) offers the online program and workshop series to benefits-eligible employees with 5+ chronic conditions. The $250 fee for six 2.5-hour workshops is underwritten by the university and Stanford Hospital and Clinics/Lucile Packard Children's Hospital. For more information, please contact Stanford Coordinated Care.

Interview conducted by Julie Croteau and edited by Lane McKenna Ryan.