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“You Don’t Look Sick”

How online communities become safe havens for people living with chronic diseases

By Eric Peacock, Co-founder, MyHealthTeams

“If you look at me, you’d say ‘She’s not sick.’ Nobody knows what I go through every day.” – Mary Lou, Austin, Texas, living with lupus since 2003.

For people living with an “invisible” chronic disease such as lupus, life can be isolating. Friends and co-workers don’t recognize the daily struggles lupus can present, and many people with lupus hesitate to share their hardships with others who don’t truly understand what it’s like to have the disease.  This isolation can be devastating, especially when combined with the continual physical and mental distress caused by diseases like lupus.

For years, Mary Lou faced this sense of isolation. Her physical symptoms - including pain and fatigue - sometimes made it difficult to get out of bed, much less work her full-time job as a social worker. Still, with no lupus support groups in her hometown of Austin, Texas, and little emotional support outside of her husband and son, Mary Lou felt alone. Many of her friends and family didn’t know what lupus was.

The burden of isolation lightened last year when Mary Lou joined MyLupusTeam, a free, online social network that allows people living with lupus to connect in a safe environment. Now, Mary Lou can turn to the nearly 20,000 members of MyLupusTeam, including the 800 members of her handpicked lupus “team”, any time for advice, practical tips and emotional support.

We created MyLupusTeam, as well as a network of online patient communities because we believe that if you are diagnosed with a chronic condition it should be easy to find and connect with others who have been in your shoes. We also believe that social networks like MyLupusTeam help improve the health of our members by lifting the curtain of isolation people like Mary Lou live behind, and allowing them to learn from others like them and take a more active role in their own care.

Patient social networks such as MyLupusTeam also give patients a seat at the table - a way for their voices and needs to be heard by the healthcare industry in a safe and anonymous way. UCB is currently engaging MyLupusTeam members to help identify the symptoms most impacting their daily lives, their treatment priorities for new therapies, and the hurdles patients may face such as difficulties with insurance or the high co-pay costs for new drugs. By getting the input of real people living with lupus, UCB can better personalize future solutions for people living with this disease.

After years of feeling like no one could relate to her plight, Mary Lou says she and her team members are “stronger together.” We believe there may come a time when physicians prescribe participation in an online social network like MyLupusTeam, just as they prescribe medication. After all, healthcare involves a lot more than just medicine.

Question (from UCB):
If a physician prescribed you a membership to an online disease-related community, would you fill that prescription?

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