Social Media Building Community for Chronic Illness Sufferers - Mayo Center for Innovation

Following Chronically Kristin!

Post Written By Meghan Zimmerman

At the end of September, I had the opportunity to attend the Mayo Transform Conference. It was a remarkable opportunity to talk about improving the patient care experience with healthcare practitioners, designers, engineers, patients, educators, and innovators around the world. As a writing intern for CFI, I also had the opportunity to meet and work with the social media team covering the Transform Conference, including the remarkable Kristin Coppens. Kristin is the Social Media Specialist for Spectrum Health, a company based in Michigan. Kristin has a blog, a Twitter aficionado, and an advocate for invisible illness. Kristin in an expert about invisible illness and and improving the healthcare system for patients because she has three major chronic conditions: Ankylosing Spondylitis (an autoimmune spinal arthritis condition), Fibromyalgia, and Chronic Fatigue Syndrome. Almost immediately, Kristin turned to social media for information, support, and other resources.

In her blog, Chronically Kristin, she describes her experience with the healthcare system and how she handles multiple chronic illness while working a fulltime job and living her life. Kristin has accepted the fact that chronic illness means that she will get sick more often than most people. However, most people will never have to deal with what Kristin experiences on a regular basis. In her blog, she describes all of the medications she is on and the complicated care plan her team of doctors outlined for her.

Kristin described how, from the outside she looks normal, and no one knows what she is dealing with. Kristin has to make major health decisions every day, and she has to work really hard to find the balance between keeping her chronic conditions managed and also looking at the long term side effects of some of the medications she is taking. In her blog she said, “How do I choose the right thing, or the lesser of two evils? I’m not even 30 years old yet. I have a lifetime of disease to live, and more importantly, I have a lifetime to actually LIVE.”

I recently had the opportunity to interview Kristin about her experience with chronic illness and learn about how she is using social media to increase awareness of invisible illnesses. I asked her about what options and opportunities are available to patients. She told me that the opportunities vary, but in general, the healthcare system doesn’t know how to maintain a good quality of life for patients dealing with chronic illness. She said the biggest problem was that patients with chronic illness often get overlooked. Kristin also said that patients have the ability to be advocates for their health. She said, “We have the power to modify the health care system and its perception. We just have to harness the strength to do so.”

Social media comes easily for Kristin - as the social media specialist for a large health system, she knows how to use the social media to share her experience and advocate for patients. Kristin also described how she has a family of fellow patients of chronic illness. Social media has allowed her to spread awareness, share her experience with other patients, and feel less alone as she lives with chronic illness. In her blog, Kristin described how her chronic illness has opened the door to many opportunities and she has become a strong advocate for other patients.

Finally, I asked Kristin how her perception of illness has changed since she started blogging. Kristin describes how she had to learn what it was like to deal with a new “normal” and deal with the healthcare system every single day. I would paraphrase, but I couldn’t say it any better than she already did. She said, “Dealing with symptoms and treatments for the rest of your life will not only change how you view the world around you, but it changes you as an individual. It takes a toll sometimes. I know that I’m a naturally strong person; however, chronic illness knows no limits. At my lowest, social media has brought me out of the darkness. I’ve found friends, I’ve found a “tribe.” At my highest, social media lets me share my ideas, my experiences, and ultimately, help others. If I can help other invisible illness patients through social media like it helped me (and continues to do so), then this is almost all worth it.”