Social Media Can Be a Vital Connection for People with Chronic Illness

Social media platforms get a bad rap for their scams, fake news, arguments with strangers, and other pitfalls. But for people who live with a chronic illness, social media can be a lifeline, too.

Social media is rife with potential dangers, from online bullying and fake news to scams and predatory activity.

The anonymity that social media provides can make it easy for bad actors to take advantage of people who are unsuspecting or not especially tech-savvy.

It doesn’t help that social media apps are so widely and easily accessible — just a couple of clicks, and they can be installed on any device. That means anyone could be behind the posts you’re seeing, whether that’s someone as young as 8 or someone potentially dangerous.

It’s essential to be aware of these pitfalls and take precautions.

And yet, when it comes to connectivity and collaboration, nothing has been more revolutionary in the past few decades than social media — it has enhanced these aspects of our lives in wondrous ways.

Still, we’ve seen far more headlines in recent years touting the negative aspects of Facebook, X (formerly Twitter), Instagram, TikTok, Reddit, and other platforms rather than their positives. And with an abundance of such headlines, a narrative also has arisen that social media is inherently a harmful, dangerous, or toxic place — a cesspool of society.

It would be perhaps more accurate to say that social media reflects humanity and what it is capable of — its best and worst.

Among its best are how it supports people in the chronic illness and disabled communities. For them, there are many ways that social media can be genuinely beneficial.

So what are those?

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Creating connection

Making virtual acquaintances and friends isn’t a sure or fast process, but it is possible. Whether it be through following each other on Instagram or TikTok or meeting through online support groups, it can and does happen.

People who are chronically ill or disabled often find great benefits in chatting with someone who understands their experiences. I’ve seen several content creators becoming great friends, meeting in real life, and even attending each other’s weddings!

Now, it’s not to say that you’ll find your eternal best friend or soulmate on social media, but it IS to say these friendships are authentic and valid and can be equally beautiful and transformative.

Considering that chronically ill and disabled people often have difficulty leaving the house, making friends in real life may be difficult. As a result, loneliness is really common for those with chronic illnesses and disabilities, so speaking to and connecting with others virtually can be a way to improve well-being.

Providing education and awareness

Chronically ill and disabled people often end up needing to be their own advocates when it comes to their healthcare. Often, this is because there is still limited awareness, even among healthcare professionals, about various conditions.

Social media is a great place to spread awareness about the effects of chronic illness on someone’s life. This can be validating for those who experience chronic illness and informative for those who don’t.

In addition, social media can be a great place to share knowledge about conditions and their comorbidities.

For instance, I first learned about the connection between inflammatory bowel disease (IBD) and osteoporosis/ low bone density through social media. I asked my doctor about it since I also had multiple other risk factors for low bone density.

They organized a DEXA scan, and the following month, I was diagnosed with osteopenia. This is the stage before osteoporosis, where bone density is lowered but can still be heightened through specific measures. I’m now on high-strength calcium and vitamin D to prevent bone loss from worsening.

While the issue of “self-diagnosis” often comes with heaps of caution from licensed health professionals, social media can and does help people make a diagnostic discovery, pointing them in the right direction in the medical system and changing their lives for the better.

Removing taboos

Life with chronic illness and disability comes with its fair share of topics that society often regards as “taboo.” For instance:

• mental health issues that arise when living with a constant health issue
• romantic relationships/dating/sex with a chronic illness or disability
• use of medications required to survive
• personal hygiene/cleanliness issues

Advocates, organizations, and content creators can use social media to safely explore these topics and remove the perceived shame associated with these conversations. They create a safe place where people can discuss these issues.

Offering advice

While you should always take medical advice online with a large pinch of salt and remember that each person’s experience with a health condition is different, such advice can sometimes be helpful.

For instance, posts on Reddit may contain threads about specific symptoms, medications and other treatments, which can prove informative when trying to learn more about your own experiences and options.

In addition, asking for advice can be helpful and validating. After all, if you’re unsure whether a symptom you’re experiencing is “normal” or not, it can feel rather scary! Asking those who live with the same condition what they’ve experienced can be helpful.

Supplying validation

Living with a chronic illness or disability comes with a whole host of feelings that are difficult to navigate and often feel isolating.

Whether through chatting with others who have the same condition or viewing supportive content, social media can help validate feelings such as:

• sadness
• grief
• frustration
• comparing yourself to non-disabled people
• internalizing ableism (such as feeling as if you are lazy/a burden)

Highlighting resources

Many advocacy and support organizations are taking to social media to spread awareness about the services they offer. Some include:

• Bezzy: provides information and connections for people living with chronic health conditions
• Chronic Disease Coalition: advocates for equal access to healthcare for those with chronic diseases and illnesses
• CICRA: supports children and their families living with IBD
• Crohn’s and Colitis Foundation: provides support, education, and awareness around IBD
• InvisiYouth – connects and supports teens and young adults living with chronic illness

Doling out humor

This, of course, is subjective, but for me, there’s nothing like seeing a meme about some experience of chronic illness (made by those who are chronically ill themselves) to make me laugh and smile. Who doesn’t love a good meme?

The takeaway

It’s essential to be aware of social media’s dangers and take measures to stay safe and distance yourself from questionable users.

But from online friendships to information, from memes to support groups, social media can be a validating and educational place for the chronically ill and disabled community and a lifeline we shouldn’t disregard.