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The Value of Sharing Experiences in P/P

At the 2010 Annual Meeting in Philadelphia there were many patients and doctors who have consistently attended the meetings as much for fellowship as for information. There were also patients who were newly diagnosed and needed basic education on pemphigus/pemphigoid. Anyone who has attended these “marathon” weekends knows first-hand how much information is disseminated through lectures, expert panels and town meetings. It can be a bit daunting and always takes time to process, in addition to being exhausting. From past conferences, it has been my experience that by Sunday morning most people have left or are mentally unable to comprehend any more. It was a pleasant surprise this year to find so many still present on Sunday and eager to learn more!

This year I facilitated a group that gave patients time for face-to-face interaction, allowing them to talk in a more conversational way. I was privileged to talk with (not at) other patients with P/P at a breakout session on Sunday morning.

The purpose was to allow patients to share their experiences with each other. Instead of sitting in a panel or conference style, we arranged the chairs in a circle to make the room more conducive to a conversational experience. My purpose was more to guide the group than to “present”, since our experiences have consistently shown that people need to be heard as well as educated. What patients learn from each other is often more important than what can be learned otherwise. Lifelong friendships are made and validation occurs.

Those who attended this session were different ages, nationalities and genders; we also had patients with years of experience and those who were recently diagnosed. In addition, several caregivers attended.
Once people started to introduce themselves and talk about their experiences, the energy level in the room just took on a life of its own. People started to identify with others’ experiences, and the group dynamics changed. This year, we were scheduled for one hour, and fortunately no one threw us out when we went past our allotted time. Will, in his own “Will way”, did let us know this could happen at any time — but it didn’t. Thanks, Will!

Smaller groups of people began to talk to each other more toward the end, as they related to each other’s stories and experiences in getting diagnosed and treated and could share their own similar experiences. Since this was the purpose of the session, I was pleased that we had met long enough for that to occur. I also gave patients in attendance some inventories to complete on their own to give themselves a better idea of the psychological/emotional toll that these diseases can and do have on both patients and caregivers. A few people have since let me know how helpful it was for them to have words to describe the way they are feeling.

As I told the group in attendance, if someone walked into my psychology office and told me that they had received one of these diagnoses and that they were just fine I would want to know how that could be. The only defense mechanism which allows people to not be affected emotionally is denial. There also remains a number of people who are unaware that the American Psychiatric Association’s Diagnostic and Statistical Manual (DSM) does recognize that patients’ emotions can be affected by certain illnesses (e.g., 293.83 – Mood Disorder Due to. . . [Indicate the General Medical Condition]).

As some with alcohol problems have discovered, Alcoholics Anonymous (AA) allows people to become — and stay — clean and sober by having meetings and sharing stories. Since it is so helpful to talk with others with the same diagnoses but different stories, I have begun to wonder if we may want to begin thinking of our own Twelve Steps. Just a thought…

Remember to take care of yourselves and to not give up hobbies and activities that have provided joy in the past, unless you are no longer able to do them because of your health. And, if that is the case, try to find a substitute hobby or activity to keep joy in your life. This may be challenging, but it is absolutely necessary for your mental health. Stress takes an enormous toll on our physical health, as well as our mental health, so continue to work on more positive coping strategies.

If you need help with this, do not hesitate to ask for it.

Posted in Issue 61 - Summer 2010


The P/P Registry has been approved by the Western Institutional Review Board (WIRB) and is actively enrolling participants.