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Wellness 2.0: Online Communities In the Face of Chronic Illness

Jessica Protasio, Children's Instructor and Research Specialist for the Howard County Library System
Jessica Protasio, Children's Instructor and Research Specialist for the Howard County Library System
In 2003 -- at just 18 years old -- Baltimore resident Samantha Kelly was diagnosed with papillary thyroid cancer. At the time, she was already blogging about life as a "young and angsty teen," but her blog soon became an outlet to share her experience and cope with her new reality.

After revealing her diagnosis and treatment via her blog, Kelly realized what she had to say could benefit someone else.

"It wasn't just me complaining about the cards I was dealt; it was a way to connect with other people," Kelly says.

The rise of new media technologies such as blogs, Twitter, Facebook, and online support groups has created a unique space for people with chronic and life-threatening illnesses to share their health struggles, garnering support and camaraderie along the way. Online communities give people a place to let their guard down in a way that face-to-face contact doesn't provide.

When Kelly was going through her treatment, many of the online communities that are available today weren't around. "I look around today at all the resources I've found in the past three to four years and I wish they had been more accessible when I was initially going through treatment," she says.  

Jessica Muir, another Baltimore resident, has been lucky enough to be able to take advantage of such resources. At five months old, Muir was diagnosed with cystic fibrosis (CF), a genetic lung disease. She started blogging at Exercising Diary of a Cyster in 2009 as a way to track her exercise progress, something that is vital to patients with CF.

"[My blog] allows me to vent my frustrations and celebrate my victories. I'm also able to stay up-to-date on the latest news and research [regarding CF]. It's wonderful to see positive breakthroughs in research it provides hope," Muir says.

Now 31, she says these resources have been invaluable to her emotional well-being. "To know that you're not alone in this, that there are people out there fighting the same battle as I am. I have a place to go where I feel safe and comforted in dealing with this disease."

It's not just patients of chronic illness that benefit from these online resources. Kate Frieder, a Canton resident, started blogging at From Magerks to I Do in October 2007 after she got engaged to her now husband, Ian. Initially, she used her blog as a way to document the wedding planning process. It eventually evolved into a look at her life as a whole.

In August of last year, Frieder gave birth to her and Ian's first child, Luca. Three days after her birth, Luca was diagnosed with urea cycle disorder, a disease in which the liver is missing an enzyme used to process protein. At just four months old she underwent a liver transplant where she received 15% of her father's liver. Frieder immediately disclosed her daughter's condition on her blog.

"I never want her thinking that her disorder is something to be embarrassed about and being open about every aspect is very important to me," Frieder says.

Not only has her blog been a great outlet for what is going on with Luca, but Frieder has also been able to connect with other parents of children with the same condition.

"Luca's condition is extremely rare. In the first few weeks after her diagnosis I was feeling incredibly discouraged by the information online, until I came across some blogs that changed my outlook. I am now 'friends' with many bloggers who are documenting their journeys of raising a child with urea cycle disorder. It has become like a second family to me one that nobody wishes they had to have, but when faced with such a life-altering disorder has been invaluable," Frieder notes.

Many of the people the Frieders have met online are now a part of their Baltimore life, coming to visit Frieder and her family when they are in the hospital.

"This community knows how I feel without me having to say much. They are willing to put themselves out there to support us in any way they possibly can. And they also are further out in this journey, giving me the hope I need to keep moving forward," Frieder adds.

Kelly has also met local people thanks to social networks.

"I've utilized Twitter and Facebook to connect with non-profits like [the local] Ulman Cancer Fund For Young Adults and Hopewell," Kelly says.

Rachel Wiederhold, Program Manager of Communications & Mission Engagement at the Columbia-based Ulman Cancer Fund, says they started using Facebook and Twitter two years ago, and the response has been overwhelming.

"We've gained new volunteers, connected with young adults impacted by cancer, and have had people join Team Fight, our endurance sports team that serves as a way to spread awareness and fundraise for UCF," Wiederhold says.

Jessica Protasio is one of those young adults. Diagnosed with liver cancer at 27, she recently received a liver transplant and is doing well, thanks in part to UCF.

"The Ulman Cancer Fund has directly put me in touch with other survivors who I've met, run with, and now meet regularly. I'm happy to say that through UCF's efforts and great online networking, I've been able to keep life moving forward despite diagnosis and have met some really incredible people along the way," Protasio says.

Kelly, Muir, Frieder, and Protasio are just a few examples of the Baltimore residents who are using these new media technologies to build communities, share diagnoses and treatments, and reach out to others in similar situations. In fact, Kelly has been inspired to make a career change.

"Blogging has been one of my main motivations for wanting to go back to school for a Masters in Social Work. Not only do I want to help other cancer patients, survivors, and their families, but I want to do my best to shower them with the resources I felt were lacking during my battle," Kelly says.

Katharine Schildt is a freelance writer and an editor for Agora, Inc., a financial publishing company based in Mt. Vernon. She blogs about her own experiences with a chronic illness at From A to Pink. Katharine lives in Federal Hill with her boyfriend and ever-expanding collection of books and shoes.

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