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What's Your #ChronicLife? Sharing the Raw Reality of Living With a Chronic Health Condition

August 17, 2015

No two health conditions are alike. But one experience shared by most people living with chronic diseases, including HIV, is the need to deal with their condition on a daily basis in ways that are often invisible to others. Now, people living with HIV are invited to add their experiences to an online project giving voice to people with chronic conditions, known as #ChronicLife.

What does it feel like, moment by moment, to live with almost constant pain, or to remember to pause during the day to take meds or give yourself an injection, or to have a friend say, "I thought your health condition wasn't a problem for you anymore," or to face stigma and ignorance surrounding your disease? To raise awareness of these experiences, and many more, patient advocate Britt J. Johnson created the hashtag #ChronicLife.

Johnson has been living with autoimmune arthritis since age seven, and writes openly about her challenges with chronic pain on HealthCentral.com and at The Hurt Blogger. But she wanted to do more after realizing that a close friend nevertheless remained ignorant of her daily struggles.

In a blog entry on HealthCentral.com, Johnson explained her worry: "If I can't help those closest to me understand the reality of the diseases I live with, who else was I failing to reach?" She decided to live-tweet to #ChronicLife for 48 hours every time the disease affected her life.



Johnson recalls, "Turns out, I was tweeting constantly -- which was very telling about the enormity of living a #ChronicLife."



The result was an intensely personal, often funny, always powerful chronicle of the balancing act between physical and mental wellbeing, intimacy and isolation, and expectations and reality that is often necessary when living with chronic disease.



Read all two days of highlights from Johnson's first #ChronicLife experiment.

People responded enthusiastically, sharing their stories. Johnson reports, "Luckily, the initial experiment caught on and I wasn't a lone wolf anymore! Many people with different diseases began tweeting their reality of living with their diseases too. What began as a solo experiment quickly grew into a movement. THRILLING!"



A second #ChronicLife event, hosted on HealthCentral's @Health_Tips Twitter account, had close to 1,000 participants representing a wide spectrum of chronic conditions, all tweeting about their daily experiences.

"Finding people who know and share my reality has been incredibly meaningful," writes Lene Anderson, another HealthCentral.com blogger and #ChronicLife participant. "It feels like home. The #ChronicLife event multiplied that feeling by thousands."

What do you want to say to advocates living with other chronic conditions -- and to the wider community -- about the moment-by-moment experience of living with HIV? The next #ChronicLife takeover of @Health_Tips will take place from Friday, August 28, 2015, at 12:00 a.m. through Sunday, August 30, 2015, at 12:00 a.m. Eastern Daylight Time. The takeover will be hosted by HealthCentral expert Alisha Bridges. Although it will use Bridges' experience living with Psoriasis as a jumping-off point for highlighting Psoriasis Awareness Month, the two-day social-media event is intended for community members living with chronic conditions of all kinds to participate, share their own experiences and offer support to others.

We encourage people living with HIV to jump into the digital conversation from August 28-30, join the #ChronicLife movement, and share what's unique -- and what's universal -- about your #ChronicLife.

Stay tuned for details on how you can join our World AIDS Day #ChronicLife Twitter takeover -- which will be all about living with HIV -- in early December as part of TheBody.com's annual World AIDS Day feature!

Olivia Ford is a contributing editor for TheBody.com and TheBodyPRO.com.


Copyright © 2015 Remedy Health Media, LLC. All rights reserved.


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