The news is full of stories of celebrities
living succeeding with chronic diseases. Michael J. Fox is perhaps the most famous, but Angelina Jolie placed herself firmly in that camp with the recent revelation of her double mastectomy.
In many cases, this type of attention can be a good thing for folks living with these conditions. It brings attention to the disease, prompting research dollars, but it can do more for the public. It’s much easier to say, “You know the tremors that Michael J. Fox has? I have something like that,” as opposed to, “No, no, say it like this: dis-tone-ee-ah.” Their admission of sickness helps to normalize that sickness. People live, breathe, are happy and succeed while living with chronic conditions and now you can learn about that on the cover of People magazine.
The problem is that there’s a lot more chronic conditions and rare diseases than there are Hollywood celebrities. So what do these admissions do for people with Amyloidosis, perhaps, or Sjogren’s Syndrome, or Fabry Disease? Previously, they were relegated to awkward discussions with friends and family members who could never understand what Multiple Sclerosis feels like, but today, with the advent of online social networks, many people living with these types of conditions are finding each other.
Evidence for this amazing virtual support community is everywhere. For example, this recent article in the Chicago Tribune highlights one woman’s use of social networks to deal with Spontaneous Coronary Artery Dissection:
Stricken in January 2011, McGarry left the hospital after five days feeling isolated and confused. Finding information about the ailment — spontaneous coronary artery dissection, or SCAD — was difficult, and doctors were unable to help, she said.
McGarry eventually discovered a thriving online community that provided details about her condition and, more important, encouragement. With a few clicks of a mouse, she plugged into a wealth of information and support.
From as far away as New Zealand, Australia and the United Kingdom, these survivors are part of a patient-driven revolution in the world of rare diseases, who mobilize through social networks, experts say.
One of my favorite healthcare focused websites posted this year on how the rare diseases included in their Healthcare Hashtag Project have helped people, and one of the sites authors lamented how he wished he had this resource at his disposal when he was diagnosed:
My diagnosis was confirmed following an MRI to rule out anything else, and a visit to the neurologist. However, even he, who had been in practice for 26 years, admitted that I was only his second case. And when I showed up for my first day of physical therapy I couldn’t help but wonder what I was facing. How long was my own recovery going to be? No health professional that I was encountering (urgent care physician, family physician, neurologist, or physical therapist) had any experience with my rare condition.
So I again turned to Dr. Google.
Desperate for answers, and even more desperate to hear from someone (anyone!) who had already gone through what I was facing, I Googled my diagnosis every way imaginable. What I found was the same generic description that showed up in different formats on different domains.
I felt completely isolated. I felt depressed. And, quite frankly, I was scared.
Today, though, finding that support is much easier through networks like Ben’s Friends and PatientsLikeMe. As health communicators, it’s our job to know that these types of support exist. While it would be helpful for us to let the community know about these resources, I think that our main concern should be letting the healthcare providers know about them. When a doctor gives a diagnosis of SCAD, their next sentence should be about these supportive networks. Given how inter-related social support and mental health and mental health and physical health are, it’s shameful that we don’t do more to facilitate these types of connections.