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The Good, The Bad, and The Ugly of Chronic Illness on Social Media

Jaqueline | @j_child | October 11, 2018

In recent years, social media has become the most popular form of communication. There has been a steady rise in the use of social media. People are able to document their lives, share their views, and connect with others similar to them. The presence of chronically ill social media users has made an impact in the community. Like everything in life, there are both positive and negative effects of sharing about one’s chronic illness experience on social media.

Let’s start with the good. A few years ago, it was hard to find anyone in a similar situation as me. My social media was filled with people I knew personally; therefore, I never connected with another chronically ill person. Now, I can simply search #ehlersdanlos and I can find hundreds of people with this condition. Moreover, finding these people allows the sharing of information. People give suggestions on medications, doctors, and procedures. Chronic illness can make people feel alone and social media may be the only chance a person gets to connect with someone in a similar situation. Social media creates a sense of community for people who often feel lost and misunderstood.

Naturally, something that involves hundreds of people and difference of opinions can become extremely negative. There is constant judgment—you post too much and you are an attention seeker or you post a picture of you out and about and you are not actually ill. There has been a flurry of posts lately speaking out against the bullying that chronically ill people endure on social media. Not only are healthy people commenting hurtful things, but chronically ill people are also participating in the bullying. Social media only shows one facet of life and it is impossible to know a person entirely through the Internet. Sometimes, I get the sense that some people make chronic illness a competition—which person has the most diagnoses, who has had the most surgeries, the number of medications one takes, and so on.

I resisted from documenting my chronic illness on social media for a while. I did not want to be seen as a complainer. Part of me was embarrassed to post a picture from the hospital when my friends were posting pictures of them skiing. But being chronically ill is such a big part of me and I didn’t want to hide it any longer. In addition to posting about my illnesses, I also decided to connect with some people through Instagram. Looking at chronically ill people can get depressing. I know the reality of living as a disabled person, so I don’t feel like I need to constantly look at others in the same situation. I only follow a few chronically ill people; I connect with those who bring positivity and inspiration to my feed. The profiles I really appreciate show the reality of chronic illness while also smiling at the small things and still enjoying life.

Overall, I appreciate being able to connect to a community through social media. I have talked to people I would have never met otherwise. I have received recommendations that have changed my course of treatment drastically. I have made friends who I have never met face to face but I feel the strong connection. For me, social media is a balance. I need it to live vicariously through others while also finding people to relate to. Social media, just like chronic illness, consists of the good, the bad, and the ugly and to recognize that is critical.

Jacqueline is a 23-year-old suffering from UCTD and other illnesses while living in Colorado with her service dog. She spends her time playing guitar, painting, and hanging out with friends and family.


Instagram: @j_child

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