#ChronicLife - Sharing the Honest Reality of Chronic Illness

Patient Expert

Sitting at a small dinner party with fellow advocacy friends, I found myself fidgeting and having trouble focusing on the conversation.  This was the first sign that my chronic pain — due to spondylitis and rheumatoid arthritis—was sneaking up on me. I have learned to read these cues in myself and knew it was time to stay ahead of the pain. I had a long train ride back to my bed for the night, and I needed to be proactive. Being as unobtrusive as possible (or so I thought), I slipped my hand into my purse, pushed open my little orange prescription bottle and popped a pain pill.

A friend suddenly called me out in bewilderment, “Are you sick? Did you hurt yourself?!” Stunned, I looked to a fellow patient advocate as we both heard my friend say, “But you don’t look sick! I thought your disease was controlled?!” Enter my total shock.

If this person who knows me, knows of my disease and the things I post online, did not understand that I need medication on a daily basis, as an advocate, was I completely failing at accurately representing my disease?

This event haunted me for months. 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?

#ChronicLife was born

After worrying that maybe I shared too much of the good, and not enough of the gritty, I decided to live-tweet my #ChronicLife for 48 hours on February 2-3, 2015 and to follow certain rules. I decided I would tweet every time my disease affected my life, or I felt pain.

Turns out, I was tweeting constantly – which was very telling about the enormity of living a #ChronicLife. Luckily, the initial experiment caught on and I wasn’t a lone wolf any more! 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!

Those original tweets of mine are archived, as well as highlights from all of the original participants. These tweets have the power to educate not just family and friends, but also healthcare professionals. They have already been used in classrooms all over the world! Members of pharmaceutical industry have been watching and listening, and summing up what it was like to learn from patients in this way.

With the support of HealthCentral and their much larger megaphone via the @Health_Tips Twitter account, I again live-tweeted my #ChronicLife on May 12-13th along with several over HealthCentral RA writers. This time, with the help of nearly 1,000 patients, we trended both days on Twitter and eventually made over 15 million impressions! Think of impressions as the number of times someone viewed a #ChronicLife tweet. That was over 15 million moments of education and awareness!

So what is #ChronicLife now?

#ChronicLife is a positive movement of openly sharing the reality of living with a chronic disease or condition. The hashtag is now being used across multiple social media platforms, and becoming an identifier. To identify as someone who shares their #ChronicLife, is to say you live with an ongoing condition that you must treat on a daily basis, that you want others to learn from you, and you will try to be positive and proactive in how you share your learned wisdom.

#ChronicLife gave me my freedom

I had always felt that I was open about who I am living with my diseases, and my struggles, but I was holding back online and in person. Committing to #ChronicLife gave me the freedom to own my honesty.  I no longer feel like sharing the gritty or tough moments will be a bad thing.  I know that I have a community that will support me through my darkest moments. #ChronicLife expanded my safety net, and allowed me to breathe more deeply. I feel lighter. I know that others can learn from me, and that is a powerful thing.

#ChronicLife IRL (In Real Life) improved

Because of #ChronicLife I began telling fewer white lies to my family and friends.  Instead of always saying, “I’m fine.” I started answering more honestly about how I am doing, “Eh… today was kind of tough, but I’m still here!” This has begun to paint a more accurate picture to those around me, and I have begun to hear the most remarkable things coming from those around me. Just the other night a friend randomly said, “and well there’s such an emotional component to living with your disease.” I am still trying to pick my jaw up off the floor from that!

Selfishly, #ChronicLife has been a gift in my personal life. I feel less like I’m standing in a constant shadow. I feel like its OKAY to just be me, every part of me, out in the open.  On a larger scale, I smile every time I see someone new using the #ChronicLife tag, owning their reality in a positive way, teaching others around them, improving healthcare, and ultimately creating a better world. Who knew a little old hashtag could do all that?!

Want to do your own #ChronicLife live-tweet experiment? Read the wrap-up of the May event and join the movement!