The Challenges of Sharing My Disease on Social Media

In the age of social media, finding a balance between appearing normal and wanting people to know when you're sick or in the hospital is no easy task -- especially when you have an invisible disease like cystic fibrosis.

| 4 min read
Lawren-Geer-Headshot
Lawren Geer
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The other day, I opened my favorite social media app, Instagram, and started clicking through people's Instagram “stories.” I came across one girl who was posting pictures from the hospital complaining about how sick she was. As a reflex, I found myself rolling my eyes and thinking to myself, “Wow, this chick is thirsty for attention.”

Lawren-Geer-Instagram-Post

Then, I stopped and thought about the time I was in the hospital two years ago and posted a picture of the flowers my boyfriend at the time had sent to me in my hospital room.

Why did I post that? Sure, I had wanted people to see I had a great, supportive boyfriend. But, deep down, I definitely wanted people to know I was sick and being hospitalized. I don't think I necessarily wanted them to feel bad for me, but I certainly wanted people to be aware of what was happening and -- maybe -- reach out to me.

Being hospitalized is extremely isolating, especially for people with CF, who are quarantined to their rooms to minimize the spread of bacterial infections between patients.

 

Balancing this isolation and sickness with trying to have a normal, everyday life is extremely challenging.

On the one hand, having an invisible disease has its perks because people don't necessarily have to know you're sick unless you tell them. But on the other hand, it also means that you have to figure out how to actually tell them at some point, which can be tricky. Is there an elegant way to tell people, “Hi, I know I was at happy hour the other day and seemed totally fine and normal, but I've slowly been getting sicker and sicker and today I woke up running a fever and couldn't breathe so now I'm in the hospital and lonely and need you to reach out to me and understand?”

If there is, I certainly haven't mastered it yet.

So yes, when I'm sick I want attention -- but the good kind of attention, not the bad -- and there is a very fine line between the two. I want people to ask me how I'm feeling, but I don't want them to feel like they can't invite me out anymore because I have this disease.

I want people to care and be concerned, but not to comment on every cough attack I have or feel like my CF is the only thing I want to talk about. I want my co-workers to understand why I might be struggling to meet some deadlines this week, but not to think I'm less capable or my skills are compromised because I have this disease. I want them to see that I work harder because I have this disease, not the other way around.

So, next time you see someone posting on social media about being sick or sharing pictures of IV lines from inside the hospital, I hope that instead of rolling your eyes (like I'm guilty of doing), you try and put yourself in their shoes. Try and think about what they're really saying with their posts and what they really want out of it. Maybe they do want attention; is that so bad?

This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.

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Social Life and Relationships
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Lawren grew up in Sparta, N.J., and was diagnosed with cystic fibrosis when she was 2 years old. After graduating from Temple University in Philadelphia in 2015, Lawren moved to Washington, D.C., to pursue a career in government affairs. She currently works in advocacy and policy for the American Society of Clinical Oncology, where she helps to advocate for and promote improved cancer care for patients. In her free time, Lawren likes to exercise when possible, read, and hang out with friends in the city. Lawren has two brothers and wonderful parents who she credits for helping her maintain her health and happiness.

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