Sharing Life with CF on Social Media

“Ella, you were at a bar?! I thought you were going to the hospital?”

I received this perplexed (and perhaps skeptical) text after I posted a picture to social media of me at a local brewery for a cystic fibrosis-related fundraising event. I was smiling with a group of girls and the caption stated that I will go to Duke University to begin evaluation tests for lung transplantation due to my rapid health decline.

What that photo didn’t hint was that it took 4 liters of oxygen to walk from the car into the bar. I didn’t take a sip of alcohol the entire time I was there. I was holding the nasal cannula in my lap just long enough for the photographer’s shot. Though I’m shown smiling, only minutes later I coughed uncontrollably as tears welled in my eyes.

But could I actually be that sick if I’m showing pictures of myself looking completely normal?

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I have briefly shared on social media the realities of the last eight weeks because I want my fears and experiences understood and my plight sympathized by those close to me. The past two months included IV antibiotics, three hospitalizations, constant supplemental oxygen use, and the quick decision to begin lung transplant evaluation. I have tried to show this reality with photos of me using oxygen, as the cannula and tank really are a couple of the only things that make this disease visible.

CF has become a significant part of my life, and my public image would be a façade if I didn’t share these details. But I don’t want my social media to be the diary of a sick girl. I get anxious just wondering what others would think about me if I did that.

In this social media world, some people know us only by our online presence, which can misconstrue the realities of life. The shared glimpses don’t represent the details of actual day-to-day life. I fear that others will judge me and doubt my sincerity and genuineness due to the anonymity of the internet. I don’t want to seem volatile, inconsistent, or as if I misrepresent my life.

Perhaps images of oxygen use with captions expressing my hardship contrast too sharply with subsequent posts showing me somewhat recovered and smiling with a group of friends during an evening out. It’s not that I’ve had a dramatic recovery, but rather that I’m simply not quite as out of breath on those days. Most people close to me or in the CF community understand how unpredictable life with this disease can be, but those at a distance often don’t. I want to portray my life accurately, yet I also don’t want my CF to consume my social media.

Truthfully, I’ve only ever been given an outpouring of support, sincere concern, and care from my family, friends, the CF community, and even those I don’t know. Many people want to uplift and support me. Through connecting to people with CF online and joining a community of people who understand all I share, I am starting to feel more comfortable about sharing the ups and downs of my life with a chronic illness.

In the last two weeks, my health has stabilized so I can be more active and off of my oxygen tank’s leash. When you see a post with fun captions and a blissful smile, it is because I am truly happy and thankful that I am in this state. I try to remind myself that as long as I share parts of my life with genuine intention, others will believe it and feel my sincerity.

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Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today, or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to cystic fibrosis.