Social media that connects me with other people with cancer—especially the specific cancers I have dealt with—has been a godsend to me. In 1996, when I was diagnosed with chronic lymphocytic leukemia (CLL)—a disease I had never heard of—it was other patients on the original ACOR.org listserv that connected me with an expert in my condition and gave me emotional support. That connection saved my life, because I learned about an important clinical trial and was put in touch with other “list members” who were already in the trial that was proposed for me. They encouraged me to enter; I did; and here I am today. That was a “win.” And since then, there have been many others. I have enjoyed wonderful virtual relationships with so many caring people. In 2011, when I was diagnosed with myelofibrosis, I joined more groups, and they have been terrific for me, too.
But I have felt pain in online social media, too. And lately, in the groups I follow, there has been a lot. As much as I am thrilled to bring people stories of promising research, breakthrough new treatments, new ways to limit side effects, and stories of people living well, the fact is cancer is serious, serious business—and there are losses all too often. And between the wins and losses, there can be hope, even confidence, but there can be uncertainty, too. Right now, some of my fellow group members are reeling from the losses—a father, a mother, a husband, a wife. While their suffering is over, we suffer the loss and are angered that it happened. Now we mourn as a virtual group.
But even in that time of pain, support springs anew from the four corners of the world. It is a very cool phenomenon. People whose bond is sometimes a condition that’s even hard to spell correctly connect on a very human level over today’s social media. ACOR, HealthUnlocked, Facebook’s open and closed groups, Yahoo groups, direct messages on Twitter, and many other places, too. We are blessed that this electronic connection is possible.
Soon Patient Power will be piloting a new approach, first in CLL. We call it “Patient Café™”. The idea is to give maybe 10 to 12 people at a time the chance to meet on live video online, facilitated by an experienced patient leader. In CLL, Carol Preston, on behalf of the Patient Empowerment Network, will lead our effort. This will enable people who have never met anyone else with the condition to very comfortably have “coffee” with others. We will keep you informed as this rolls out and as we expand it. So please be signed up for alerts on our website, so you’ll know as this develops.
But the bottom line is social media brings us highs—and lately, some deep lows. However, it also gives us a community worldwide for the good times and the not so good. My dream is the celebrations of better health will increase and the losses will diminish. Thanks to all of you who join me in one of these groups. Many of us have connected directly, and my heart has been touched because of you.
Wishing you and your family the best of health!