Today, over half of US adults live with at least one chronic illness according to US Centers for Disease Control and Prevention. If you have a chronic illness — like heart disease, arthritis or a persistent mental health condition — you know exactly how isolating it can be. Before the digital era, it was nearly impossible to connect with others who had similar illnesses, let alone see the scale of chronic illness visibility. But social media is changing that. Many people with chronic illnesses have turned to social platforms to share their stories in hopes that it’ll prove helpful to anyone experiencing a similar situation.
The exchange of health information on social media has changed how we think about chronic diseases, especially for those who have them. On one side, so-called invisible illnesses that were rarely talked about (and likely never heard of) are now making their way right to your screens. And on the other hand, people who have these chronic illnesses are seeing that they’re not alone and now have an accessible tool that helps them feel more supported. We are seeing awareness of chronic illness at a scale we never have before because of how many people with chronic diseases are using these platforms to share their stories. Social media can help spread awareness about different conditions and treatment options, connect people with similar symptoms and even offer support from others with the same conditions.
“In my experience, social media has been revolutionary for chronic illness and disability. It has allowed us to create community around our chronic illnesses/disabilities where we can find validation, support and power in our shared experiences that gives us a sense of belonging in a world that constantly excludes us,” says Marie Dagenais-Lewis, operations manager at Diversability and a self-identified disabled content creator.
Even though there certainly are pitfalls when sharing information about chronic diseases online (especially when it can impact someone’s health), many have found much-needed support to navigate life with chronic health conditions through Facebook, Instagram and TikTok.
Awareness and normalization of chronic illnesses
History has not been kind to people with health issues and disabilities, and many people hide their chronic conditions or avoid discussing it out of the fear that others will view them as different. This often causes folks with chronic illnesses to isolate themselves from others. Social media has changed that.
In recent years, it’s become more common to see people sharing their stories about chronic illness in places like Facebook, Instagram and TikTok. What was once rarely talked about or taboo is now being normalized globally thanks to the power and reach of social media.
The hashtag #chronicillness has over 5 billion views on TikTok alone, and creators post about anything from what it’s like to live with a chronic illness to how to best support someone you know battling it. Chronic diseases are common, and sharing these experiences helps people feel less alone.
Sharing also opens a dialogue that can lead to greater awareness about what it’s like to live with a certain condition and, in the process, destigmatize it. And for those newly diagnosed with a chronic illness, seeing others undergo a similar process can make it less intimidating. For example, seeing someone else go through similar mental health setbacks as you can also make your experience feel less isolating.
Health literacy, education and advocacy
In the past, you had to rely on the advice of doctors and family members to find out how to manage your chronic illness. Social platforms can directly support self-management of a disease by providing online spaces where patients can interact with each other and share experiences and information about how to self manage their conditions or symptoms. I view the benefits of this education type as threefold: it gives what was once invisible exposure, helps people who don’t have the illness better understand those who do and can help you become aware of symptoms you thought were common, but may point to underlying issues you were unaware of.
People with chronic illnesses use these platforms to offer advice on coping with symptoms or give insight on helpful questions to ask during doctor’s visits . Connecting with a community can help you get an earlier diagnosis, learn about varied treatment options and help you communicate your needs to loved ones.
This isn’t to say that social media is the appropriate channel for diagnosing an illness: Health care professionals warn about the potential danger of self-diagnosing through social media. Still, it can be a good way to boost self-awareness and recognize symptoms you may not have noticed before. It’s always important to consult your doctor if you think you may have an illness.
Eight in 10 people who use the internet search for health information online and an estimated 74% of internet users also use social media. Health care providers and agencies are taking advantage of the social platforms’ reach to educate followers about chronic disease treatment options, symptoms and even how to self-manage. Health professionals can also correct any misinformation or myths spreading through these platforms.
Many also use these platforms as advocacy tools. You can use them to get involved in local efforts like fundraisers. We’ve also seen how social media can help with advocacy on a larger scale, allowing groups to organize online and bring larger issues to the fore. Whether it’s raising awareness of specific issues, fundraising for research into cures or treatments or helping make policy changes that will benefit patients, social media is an extremely powerful tool in bringing people together. Patients and public health educators have also turned to social platforms for broader reach and lower costs of advocacy campaigns.
Community and connection
Studies have shown that community and social connections can improve mental health for people with disabilities and also decrease mortality rates. A 2010 meta-analytic review found that people with strong social relationships have a 50% greater likelihood of surviving health complications. Social media provides a place to create those social connections for people experiencing the same condition.
Websites like Patients Like Me provide a centralized place for patients to find helpful information and support from others with the same illness. Other platforms, like Facebook, offer more niche groups focusing on a specific chronic illness. These groups are a great resource for finding support and engaging in community-building activities.
Approximately 4.62 billion people use social media, which means more individuals online at all times. This allows for constant support whenever it’s needed, which can be hard to come by offline. These platforms also provide a great way to find support groups in your area where you can talk with people who understand what you’re going through.
Population health and prevention
According to the CDC, six 6 in 10 adults in the US have a chronic disease. Some of those chronic diseases are preventable, and social media can help promote prevention by providing easy access to information about risk factors.
As more people talk about their experiences with chronic disease on social media, it becomes much easier for scientists and researchers to collect data on how these diseases affect the body, which can help lead to better treatments. Researchers can analyze patient discussions on social media to better understand the disease, symptoms and helpful coping methods. The same can be true for patients. For example, many people learned about long COVID syndrome symptoms through social media before health officials acknowledged the possibility of prolonged COVID-19 illness.
We’ve also seen how social media can facilitate health research by providing a venue to recruit participants for research and clinical trials. Studies show that social media performs better than traditional recruiting processes regarding budget and volume of participants. The more people (and types of people) who participate, the more accurate findings will be.
The drawbacks of social media and chronic illness
Using social platforms to discuss and educate about chronic disease has many benefits. However, there are also potential concerns regarding privacy, misinformation and the emotional tolls patients may face online.
Maintaining a patient’s health data privacy is one of the major concerns regarding social media and chronic illness. For people with chronic diseases, social media is an outlet where they can share stories about their mental and physical health. One of the risks of displaying this type of information online is medical identity theft (when someone steals your medical information to submit fraudulent claims to insurance providers). According to the AARP, nearly 43,000 people experienced medical identity theft in 2021.
Spread of misinformation
The spread of false information on social media is not new to most of us. However, the consequences can be devastating when they impact someone’s health. Once misinformation starts circulating, it’s not easily contained. This can be alarming considering that over half of Americans say they get some of their news through social media. Misinformation about chronic diseases on social platforms can lead to stigmatization, inaccurate self-diagnosis and at-home treatment and remedies that can be detrimental to the person’s health.
Negative patient emotions
Despite patients with chronic disease feeling connected and supported by others through social media, negative feelings like frustration, confusion and sadness can also arise from information found on social media. One study suggests that social media can increase sensations of stigmatization and create an identity centered on the patient’s disease.
The information contained in this article is for educational and informational purposes only and is not intended as health or medical advice. Always consult a physician or other qualified health provider regarding any questions you may have about a medical condition or health objectives.