by Dr. Michael Goldstein
In recognition of MPNforum’s one year anniversary, the theme of this month’s column is Connect with Others, which was #6 on my list of Top 10 Ways to Be Empowered.
For those of us who have MPNs, or those who care for a person with a MPN, it can be immensely helpful to connect with other MPNers. One of the best ways to connect is through online support groups/listserves (MPN-NET, MPD Chat, MPD Support), MPNforum Magazine and social networking sites that have groups devoted to MPNs (e.g., Facebook).
As you undoubtedly know if you are reading this column on MPNforum, the magazine and the groups and lists are tremendous sources of information, support and links to resources and tools that help us to manage or care for MPNs. I have greatly benefitted from my participation and I am deeply indebted to support group leaders, members, editors and contributors. Though I am a physician and knew a little about polycythemia vera (PV) before my diagnosis in early 2006, what I knew was not nearly enough to help me deal with the anxiety and distress that I experienced in those first days and weeks after diagnosis.
My first thoughts focused on my grandmother who, shortly after receiving a PV diagnosis, suffered a massive stroke that led to her death at age 63. Though she died almost 50 years ago, I was disturbed by this memory and wondered whether I, too, would suffer an early demise. Like many of you, I was thirsty for up-to-date knowledge about PV and about the risks and benefits of treatments.
Ironically, at the time of my diagnosis, I was deeply involved in a national quality improvement project to promote patient engagement in chronic illness self-management. One of my collaborators, a cancer survivor herself, had previously set up one of the first online support groups for people with cancer. She enthusiastically endorsed the value of online groups and encouraged me to find one on PV.
I searched and found the two lists that were active at the time. The JAK2 mutation had just been discovered and many of those posting shared excitement about potential new treatments that might result from this new finding. I was immediately buoyed by this enthusiasm as well as by the warm welcomes and expressions of empathy and support that I received from many participants. List members provided advice, listening, caring, affirmation and validation, much more than I got from my own health care team. You are part of that network. It has been wonderful to actually meet many of you at regional and national patient meetings, which provide yet another great way to connect and build relationships with fellow MPNers.
I also discovered another benefit of connecting to online support groupss and contributing to MPNforum Magazine and social networking groups….the opportunity to give back, to pay forward. It felt really good to share my growing knowledge and accumulating experience with others on the list. The feedback was immediate, and overwhelmingly positive. Even though I have been giving advice to patients and students for decades, I must say it feels even better to offer input to my fellow MPDers.
And…I have learned more about self-care and self-management from my peers than from reading about MPNs in the literature, or attending presentations by experts, or even from my own doctors. This has been especially true when considering ways to address common symptoms such as fatigue, itching or mental clouding
In addition to connecting us to fellow MPNers, the online groups, MPNforum Magazine and lists link us with huge searchable archives of information, the latest research publications and presentations, and to international experts and researchers who share their expertise directly in response to queries from patients and caregivers.
So, let’s celebrate MPNforum’s one year anniversary. Together, we can continue to empower each other, while also empowering ourselves. Now, I am getting a little verklempt…..so, talk among yourselves!
© Michael Goldstein and MPNforum.com, 2012. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited.Excerpts and links may be used, provided that full and clear credit is given to Michael Goldstein and MPNforum.com with appropriate and specific direction to the original content.
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