4 ways that chronic illness patients can benefit from social media

The newly diagnosed can be desperate for information and understanding

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by Charlene Marshall |

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Living with a chronic illness like idiopathic pulmonary fibrosis (IPF) is a multifaceted endeavor. It’s hard to fully describe just how many aspects of life the disease affects.

Despite writing about it for seven years, there’s always something new I want to share with this community, because navigating life with IPF requires constant learning and reflection.

In previous columns, I’ve written about the financial implications, physical changes, and social complexities involved with a life-threatening and progressive lung disease. The latter one seems particularly complicated for a young adult like me, who hopes to maintain social circles and intimate relationships.

The reality of my lung disease is that IPF causes loneliness, which deeply saddens me upon reflection. Whether it’s due to exhaustion or being immunocompromised, an IPF patient might isolate themselves for many reasons. And while this may be intentional, the loneliness still stings. Thankfully, social media can be used as a tool to connect people in a safe and impactful way.

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The loneliness patients experience is due in part to IPF being a rare disease, affecting fewer than 200,000 people in the United States. For patients, its rarity requires effort in the form of advocacy, research, and asking a lot of questions since so little is known about the disease. Having to constantly do this is exhausting and perpetuates feelings of isolation and loneliness.

When I was diagnosed with IPF in 2016, it took me a while to digest the news. After I finally began to accept my fate, I grew desperate for information and wanted to learn about other patients’ stories. But to my surprise, I didn’t find that information on educational websites; it was mostly on social media.

I know social media has a reputation for causing more harm than good, but it’s been extremely helpful to me. Because of that, I decided to share a list of four ways social media might be beneficial to chronic illness patients.

1. Credible information sharing

When a patient is diagnosed with a chronic illness, they want to know what their life will look like moving forward. It’s important for this type of information to come from a credible source.

Among the many IPF-related sites that patients can visit is the Pulmonary Fibrosis News Facebook page. This was helpful to me even before I started writing for BioNews, the parent company of this website. I was encouraged by reading short entries about the disease, tips on how to live with IPF, and snippets of the latest research. It was an easy way for me to stay informed and gather information while scrolling through the algorithm of my social media platforms.

2. Personalized experiences

Platforms that allow patients to interact with each other are an invaluable resource for those living with chronic illness. They often are structured in a way that is helpful and easy to navigate, such as grouping patients together by age or diagnosis.

Since my IPF diagnosis, I’ve met many friends on platforms like the PF News Forums, which attracts people who truly know what it is like to live with such a terrible disease.

3. Less loneliness and isolation

While the general population experienced social isolation during the COVID-19 pandemic, chronic illness patients also suffered as a result of being at a high risk for complications from the virus. For many of us, social media was our only way of connecting with others, especially early on, when lockdowns were so prevalent. During that time, I took part in writing a book with other patients I met via social media, and we ended up creating something beautiful during a time of deep loneliness and isolation.

4. A platform for self-advocacy

When I talk to other patients, they often want to give back to the PF community by sharing their stories or advocating for an easier diagnostic experience, better access to medication, or greater awareness of medication side effects. They have a strong desire to help others based on what they’ve been through.

Having a platform, such as social media, makes it easy and free for people to do this. In my experience, accessing these stories of self-advocacy via social media was invaluable.

What other ways has social media benefited you as a chronic illness patient? Please share in the comments below. 

Note: Pulmonary Fibrosis News 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 Pulmonary Fibrosis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.


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