Creativity & Chronic Illness

I spent a few days this week in Chicago, where I spoke Wednesday at the Sixth Annual Chronic Illness Initiative Symposium at DePaul University. I have been fortunate to have a long and fruitful relationship with DePaul and it’s always good to return and see valued colleagues. It’s also heartening to meet the DePaul students who are going to great lengths to continue their education in the face of complex circumstances.

May 12, the day of the Symposium, was also International CFS/CFIDS/ME Awareness Day, a day to build awareness of chronic fatigue syndrome and work to further research and end the suffering that it causes.

CFS is the first illness in which I and my DePaul colleagues, led by Dr. Leonard Jason, validated the Fennell Four-Phase Model. The papers that we published continue to influence the understanding of how people come to integrate chronic illness into their lives. I remain deeply proud of the work that we have done together and to see the DePaul team continue publishing papers to further this work.

This year’s DePaul Symposium was about Chronic Illness & The Arts. As a lifelong musician, this is a topic that is very important to me. There is tremendous power in the creative process that helps people respond better to changing and uncertain circumstances.

With a chronic illness, you often don’t know what’s going to happen from one day to the next — it’s the roller-coaster that can be the hardest thing for people to cope with and understand. As the old saying goes, the only constant is change, and this is particularly true for people with chronic conditions.

I have defined five capacities that help people establish acceptance and meaning in their changed circumstances. They are:

1. Tolerate ambiguity
2. Become curious
3. Take risks
4. Improvise
5. Innovate

Using your powers of creativity in any medium, from the arts to business to daily living, is a powerful antidote to the feeling of helplessness that so many people feel when they are sick for long, indeterminate periods of time.

If you’d like more information about this topic, check out the slides from my two presentations here.

And please feel free to leave a comment on my blog or send me an e-mail at blog.28@albanyhealthmanagement.com.

XMRV and Chronic Fatigue Syndrome

I wrote the commentary below in October 2009, when news of an association between the retrovirus XMRV and chronic fatigue syndrome first broke. With the topic back in the news this month, due to a new report from the U.K. which didn’t find this association, I thought it would be informative to share my original remarks on my blog.

The report of an association between the retrovirus XMRV and chronic fatigue syndrome (CFS) is extremely exciting. As someone who has been treating CFS patients for 20 years, I have been avidly following these reports and I congratulate the Whittemore Peterson Institute, Dr. Judy Mikovitz, and their colleagues on this important finding. I look forward to learning more about this breakthrough as they continue their vital research into XMRV, CFS and treatments for it.

I do think it’s important to acknowledge that science moves slowly and, no matter how long you have been ill with CFS, it will never seem like science is moving quickly enough. This illness robs patients of so much – not only their health, but also their livelihood, predictability, social connections, security, self esteem and other fundamentals.

The scientists are working diligently, as they have for more than two decades, to unravel the mysteries of CFS and develop effective medical treatments for it. As they persevere with this new avenue to explore, we must continue taking care of those who suffer the effects of CFS – not just the patients, but also their families and loved ones who have also seen their lives change in so many significant ways.

As I have listened to my patients talk about XMRV in recent weeks, I have heard them express many emotions – first hope and excitement that scientists are closer to finding the answers that will return them to health, but also anger that so much of their lives has already been stolen by CFS, and concern over the potential implications of having a virus-associated illness. Change, even positive change, often produces new questions and stresses that we may not have considered before. We at Albany Health Management Associates are glad to be helping our patients and their families navigate more smoothly the road that lies ahead, wherever that road takes us.

For more information about XMRV and CFS, here are some links to articles and opinions from some of my colleagues in the battle against CFS and national journalists who have been investigating CFS for decades.

Dr. David Bell

Dr. Nancy Klimas

Dr. Charles Lapp

New York Times

Dr. Suzanne Vernon (CFIDS Association)

Whittemore-Peterson Institute