Living with Lupus

Social Media, Chronic Diseases, and Lupus

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Social media can be a great tool for learning about lupus and connecting with other Lupus Warriors. But, there can be pitfalls with using the tech.

We humans are social animals, and we like to connect with each other. The most popular apps in the world are those that make it easy to share with each other.

However, for people with lupus, many methods of connection might be off the table. Or, it can leave people counting their spoons.

Pain can limit mobility. UV light– and heat-sensitivity means limited time outside or in the sun. Add in medical treatments, and scheduling time with others can become very difficult. Increased infection risk can make getting together a scary prospect. Fatigue can cause a lot of rescheduling.

It’s hard, and this difficulty can take its toll on both physical and mental health.

Social media offers a way of socializing with others that fits your schedule. Sites like Facebook, Instagram, Twitter, our LupusCorner app, and others all offer digital ways to socialize with others. Going digital helps fit socialization into a hectic and busy life, and takes out many of the barriers to socialization that people with lupus endure. Social media also allows people to connect with others who have the same condition even if they aren’t in the same city, state, or country!

The benefits of social media are tricky to measure scientifically.  However, there are studies that have looked at social media use in people with chronic diseases. A review in the American Journal of Medicine that collected and reviewed such studies:

“Using social media to provide social, emotional, or experiential support in chronic disease, especially with Facebook and blogs, appears most likely to improve patient care.”

Social media use may also improve medical outcomes in other ways. How does using social media help, however? What does it do?


Your Social Media Community and Lupus

Part of it comes from the social nature of social media. Friends and family can be connected and communicated with even while bedridden, and new friends can be made through online interactions. Experiences can be shared in such a way that it feels like one is there. It’s harder to feel left out when you are being brought in through a shared story or a livestream.

Social media also acts as a kind of support group (or series of support groups) with a very wide net. This is true for both patients and for caregivers, allowing to communicate with people in the same situation. However, the internet – and the social media on it – are more than just a platform for support groups. Social media also allows medical professionals to build connections with people with lupus, discuss medical procedures and programs, and swap tips and tricks. Patients and caretakers using social media feel empowered, according to studies, to take on both doctor and disease, as though they have a whole online team behind them.

However, the “social” element is not the only use of social media! People use social media in many ways – connection, yes, but also, according to a 2016 study, “Exploration” and “Narration.” In addition to fostering connections between people, allowing people to exchange advice, creating a sense of community, and creating a feeling of being “believed,” social media can be a great disease education method.


Lupus Education Through Social Media

Social media can link people to clinical trials, disease resources, and services. Videos, articles, and forums are useful sources of information. This information can include links to scientific resources, personal experiences, care tips, Q&A sessions, educational videos, and other useful media for people with lupus. From self-care to drug information, social media can be a very powerful tool.

It can also be a way for medical organizations to bring their information to a larger group. An article on healthy lifestyle choices on social media is likely to be seen and then shared by the people it is relevant to. They can also receive swift feedback on how useful their resources are and how they can do better.

Social media can even close the gap between doctors and patients, and allows people with chronic diseases to be informed consumers. This is especially important in lupus, where self-advocacy is sometimes key to receiving proper diagnosis and care. Education is the key to self-advocacy and social media may be an important gateway to the relevant knowledge.

It should be noted, though, that education is two way – as patients are learning more medicine, medicine is also learning more about how people interact and ask questions outside of the clinic.


What are the Downsides of Social Media?

Let’s face it, socialization can be stressful. It can be difficult to break away and get needed space from social media, and the drama is legendary.

If social media is causing you anxiety, lowering your self-esteem, or otherwise making you feel bad, then you should be very careful about using it. Consider using different social media platforms than what you are using, or finding a new forum community.

If social media use is eating your time and your energy, limit time with your devices and try to find other ways to fill the support roles. A good way to compromise is to use social media to arrange visits, outings, or calls with people in your life.

Another issue with social media – and the internet in general – is that there is a lot of misinformation to be found. Chronic diseases such as lupus, in particular, can have a lot of misinformation (and sales pitches) spread around the internet, pretending to be legitimate articles. Make sure that your sources are reliable and fact-check any and all questionable information!


A Lupus Warrior’s Takeaway

When used properly and in moderation, social media can be empowering, educational, and valuable for people with lupus. It can even improve health. Be sure to take advantage of the different types of media available on social media, including visual, auditory, reading, video. Some are easier or less fatiguing than others.

Find out what works for you, and take advantage of the wealth that the internet provides!

Comments (5)

5 thoughts on “Social Media, Chronic Diseases, and Lupus

  1. A big downside to the online groups I’ve been in is that all too often some member begins trying to give others pseudo-medical advice, encouraging others to use the snake oil treatment that supposedly cured them. Sometimes it’s relatively harmless, like taking lots of vitamin supplements. But other times the stuff they’re pushing is actually dangerous – like drinking hydrogen peroxide (DO NOT DO THIS!!!). I guess a good rule of thumb is to run any suggestion by your doctor first and if it makes his or her hair stand on end, don’t do it!

  2. Yes, if you’re using social media, use your analytical brain! But I can’t emphasize enough how much support it’s given me. I’ve had lupus for 11 years and have never met another person with it face to face (small country, no formal support groups etc). It also took 7 years to get the correct diagnosis. I joined 3 online lupus support groups in desperation and have had more help and information than I’ve had from any medical professional yet; received support when I was down, and never once was treated like I was making it up or exaggerating. Thank you to all positive, helpful online support group members…you are making more difference than you know.

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