My name is Rachel Sexton and I am a self-diagnosed hypochondriac (yes, that’s probably redundant). Until about seven years ago, I never had a sore throat that wasn’t an early symptom of esophageal cancer nor a hangnail that wasn’t a MRSA infection waiting to happen. So how did I go from late night check-ups with Dr. Google to a recent experience where I was not the least bit worried that there was something wrong with my thyroid despite lab work to the contrary (sharing that story soon on the blog)? Simple: for the past seven years I have had the privilege of being surrounded by people who live with progressive and rare diseases; people who have been dealt a scary hand, but have chosen to live a good life to its fullest. As the Vice President of VPR Patient Outreach Program (VPR POP), I have the honor of leading the teams that help these patients tell their stories and, in turn, provide education and hope to thousands of their peers and care partners. Our small but mighty army changes peoples’ lives every day, mine included. But being cured of my “fear of sickness” is far from the only way these inspiring people have made an impact on me. Here are just a few of the many lessons I’ve learned from my VPR POP family:
Service is the Best Medicine
Yes, laughter – and all those molecules in the form of a pill or injection – certainly makes a difference, but don’t underestimate the power of serving others. Most of the people who participate in our programs leave behind families and jobs….to battle travel delays and airport food…all so they can end up in a room full of strangers sharing their most personal journeys. And they wouldn’t have it any other way. There is powerful data around the mutual reciprocity that results when you make a difference in someone’s life, but I don’t need a white paper to quantify what I observe every day: it literally feels good to help. My dear friend and diabetes advocate, Ruth, went as far as to tell me once, “If there were a magic pill that would cure my diabetes tomorrow, I wouldn’t take it because then I wouldn’t be able to do what I do now.” Indeed, Ruth knew what a special perspective she was able to offer as a person living well with diabetes – she not only inspired those struggling to control their blood sugar, she benefitted from their gratitude and felt an increased sense of responsibility as a role model to take excellent care of herself.
Perspective is Everything
I will never forget how enjoying a big Italian dinner with a group of multiple myeloma advocates changed my life. I was sitting next to my friend Todd who was talking about his autologous stem cell transplant and casually said, “You know, I haven’t had one bad day since my diagnosis.” How was this possible when everything I had been taught about the transplant process included the “first 100 days” filled with dangers, agony and indescribable exhaustion. In an incredulous voice, I asked Todd how it was possible he hadn’t had one single bad day. He replied, “Well, I’ve felt really awful at times, but it’s impossible to have a bad day when you’re still alive.” Those brave words are never far from my mind when it begins to fill with stress over soccer games and work projects (and hangnails): what an absolute luxury to worry about “normal” things.
There is ALWAYS a Silver Lining
My husband would accuse me of being not just a “glass half-full” optimist, but of looking at a half-full glass and trying to convince you that there’s at least 60% in there. Yes, every personality profile reveals that my inner Mary Poppins is fierce, but considering how much strength I’ve seen from those who refuse to take off their rose-colored glasses, I’m not asking her to pack up her umbrella anytime soon. It’s encouraging to think that each of the 4000+ programs we hold across the country each year to bring education and hope to those living with a progressive or rare disease all began with someone getting a frightening diagnosis. It’s encouraging to see the friendships that have grown from people who are united in their passion to make a difference and help others live well with their condition. It’s encouraging that members of the VPR POP family with Ph.D. after their name or “World’s Best Mom” on their coffee cup still say that being a patient advocate is one of the most important things they’ve ever done. And it’s encouraging that of the thousands of patient stories I’ve had the privilege to hear, the ones with the happiest endings come from those who took the approach to keep pushing forward, knowing that a better day was ahead.
I look forward to sharing many of these stories and perspectives with you as we grow our blog and social media presence. Thanks for taking the time to read. Please be sure to follow us on Facebook at www.facebook.com/VPRPOP and on Twitter at @VPRPOP.