Imagine being diagnosed with a rare, unheard of and often misunderstood disease. The doctors aren’t sure how to cure you. Your family doesn’t know how to help you. Your friends don’t know what to say to you. You start to feel alone—like you’re suffering in silence, but then you find social media.
In the past five years, social media has truly taken off. It’s become a place to chat with family, stay in touch with friends and network with professionals. It’s become a place to find instantaneous information that’s both timely and relevant to you. But for people with severe illnesses, social media has become a place to find support—meeting, helping and interacting with people who share their struggles.
At the 6th Annual Social Media Summit in Minnesota, sponsored by the Mayo Clinic and Ragan Communications, patients took the stage to explain how social media has changed their lives, or more importantly, saved their lives.
One patient suffering from lipedema and lymphedema said that until she joined social media, she only knew of one other person with her condition. Upon joining, she was able to connect with patients from all over the world—sharing which doctors, facilities and treatments were helpful, which garments, pumps and compression wraps eased her pain, and which diet, supplements and exercises relieve symptoms.
A patient suffering from multiple myeloma agreed, saying a lot of people only have social media, and she was one of them. She had been diagnosed with a disease most people had never heard of, and the fact that her treatment wasn’t alleviating any pain made her skeptical. She wondered if her experience was normal, or if maybe she should see a new doctor. After one day seeing information on a social media channel she trusted, she was encouraged to get a second opinion. And she was glad she did. As it turns out, the first doctor had misdiagnosed her illness, and she’d been living with an entirely different one for years.
Reflecting back, she said, “Social media changed me from being someone who wouldn’t speak out at the doctor’s office to an empowered patient.”
And as an advertising agency responsible for maintaining, managing and monitoring several healthcare clients’ social media channels, what more could we ask for? To hear from real patients that the links, visuals and conversations on social media put patients on a path toward health and happiness is truly rewarding, and it makes all of the hard work and time spent cultivating social media channels well worth it. So to the patients: thank you for reminding us why we love what we do. And for giving us the determination to only do it better.
How has social media changed your life?