Power of Patient Communities.
At the end of November, I had the opportunity to contribute an article to Pharmaphorum, which is a UK-based publication with the mission to “connect healthcare thought leaders to support the pharma industry in delivering innovation.” Thanks to the thoughtful responses from Bob Pederson, Shannon Marengo, Laura Gibson, and Melanie Bunda, I was able to highlight some of the benefits of the DOC connections. Here’s that article in its entirety (with links and photo added by me), originally published on Pharmaphorum:
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Twenty-seven years ago, when I was diagnosed with type 1 diabetes at the age of seven, I was immediately handed a syringe and a vial of insulin and instructed on the how and why of injecting myself with the life-saving hormone. I tested the glucose level in my urine using an at-home urinalysis kit resembling an Easter egg coloring kit. It wasn’t until about a month later that my family was given an at-home glucose monitoring machine, helping us match insulin needs to blood sugar numbers. Semi-dark ages of diabetes.
Support and community were also somewhat remedial, and seemingly limited to where my parents’ car could drive us. For a few summers after my diagnosis, I attended a special summer camp specifically fashioned for young girls with type 1 diabetes. The once-lonely ritual of taking my morning insulin became something I did, without shame or bias, alongside my peers. Knowing I wasn’t alone made diabetes feel less isolating and scary, and instead something I felt emotionally equipped to handle.
But I eventually aged out of diabetes camp and went through my high school and college experiences without access to diabetes-centric peer support. Involved and supportive friends and family members were amazing, but there was still a gap in my care team, one that could only be filled by like-minded and like-pancreased peers. My care, both physically and emotionally, was less-than-optimal for several years.
Now, twenty-seven years after my diabetes diagnosis, I am still treating my diabetes with the same sorts of technology: insulin, glucose meter, and urinalysis. What has changed, by leaps and bounds, is the psychosocial support available to people living with diabetes, and for those caring for a loved one with diabetes. The Internet has changed that landscape of support, allowing people with diabetes to connect from two doors down or seven time zones away, thanks to social media and a willingness to disclose their diabetes to the web.
What are patients getting out of online connections? I hear this question being raised by researchers and healthcare professionals, and I am frustrated by the lack of data that proves the positive impact of patients connecting with other patients online. Few studies have been done around the psychosocial impact of online support for people with diabetes, but the ones that have been conducted show improved health outcomes.
And I shake my head in disbelief, because aren’t these healthcare professionals hearing what I’m hearing from my peers? I started blogging at Six Until Me almost nine years ago about day-to-day life with type 1 diabetes, writing in pursuit of finding others who understood and who were living normal lives, even after their diagnosis. I found so many people just like me, sharing their struggles and successes without shame or judgment. And in the last nine years, I’ve collected countless, truly countless, emails from people recounting their improved care, improved outlook, and improved lives as a result of connecting with the diabetes online community [DOC].
“[Once I found the diabetes online community,] I was empowered to take control of my diabetes. I had hope. My A1C dropped within a few endocrinologist appointments. It dropped because the number of times I tested my blood sugar per day rose from less than once to more than six. I started on a continuous glucose monitor. I tweaked my basal rates. I learned to combo bolus the hell out of pizza. I learned a whole new language with which to bring my diabetes up with my friends and coworkers and boyfriend. I learned that I had a future. The DOC taught me these strategies and more for seamlessly incorporating diabetes in with the rest of my life and the impact was huge,” wrote Melanie Bunda, diagnosed with type 1 diabetes at the age of six. “Today my A1C is under 7%. I’m in a relationship with someone who partners in my diabetes care and we are working toward a future that will hopefully include children. This is the power of the diabetes online community.”
“Before finding the DOC I was basically living status quo – and frankly didn’t know nearly what I should’ve known after all those years. But when I was diagnosed [with type 1 diabetes] at 17, I was too old for my mom to manage it for me and too young to really manage it for myself. I’ve been armed with so much information these last almost two years and am in such better control. And it helps having a fully loaded support group just a click away,” said Shannon Merango.
Bob Pederson was diagnosed with type 2 diabetes five years ago, and has been involved with the DOC for the last few years. “Initially, I was most inspired by our amateur athletes like Jeff Mather [amateur marathoner and cyclist]. I figured that while I could never duplicate their achievements, I could maybe duplicate their dedication. I can’t tell you how much help the little bits of encouragement, support, and applause I get on Facebook mean to me. Starting a few months ago, I started having the most sustained success at healthier living. I have ever had. I am choosing not to publicize numbers, but I have thus far lost [significant amount of weight]. The DOC has been critical in that success.”
Some of the stories involve data, like weight loss and A1C improvement, but the emotional support can be hard to quantify. How do you measure the concept of “feeling better?” Or confidence? ”I think the thing that the DOC has helped with most is confidence going into a potential pregnancy with diabetes,” said Laura Gibson, diagnosed with type 1 diabetes at the age of 18, now 32 years old. “A couple of years ago, my then fiancé and I always thought, ‘We’ll adopt,’ when discussing having kids. This always made me a little sad as I want to experience pregnancy, childbirth, and breastfeeding. Granted, I think adoption is wonderful and will always be an option for us, but selfishly, I want to [experience pregnancy]. Finding blogs [that discussed pregnancy and pre-existing diabetes] really made me think, ‘I think I can do this!’ It’s inspired me to get my diabetes under better control and really excites me to – hopefully – experience pregnancy in the next year or so.”
Many of the stories I hear today aren’t part of a study, nor are they being presented at medical meetings or written up in peer-reviewed journals. But online patient communities of all kinds are supporting patients and empowering them to take control of their health. These anecdotes will become part of the eventual proof that peer-to-peer support can contribute to an improved emotional state and improved health outcomes, giving people with diabetes hope that there is a healthy, fulfilling life to be found after diagnosis.
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