Social Media and Chronic Illness

For many spoonies, the relationship between social media and chronic illness can be both a blessing and a curse. On one hand, it provides community, information, and validation. On the other, it can facilitate comparison and negative self-talk. Used intentionally, social media can enrich your life.

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The information in this blog post is provided for educational and informational purposes only and should not be construed as medical advice. The 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 healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking it because of something you have read online. The author of this post is not a licensed medical professional and does not assume any liability for any actions taken based on the information contained in this post.

Building Community

One of the most valuable aspects of social media and chronic illness is connecting with others who understand your experience. The isolation of chronic illness is profound. Online communities can help you feel less alone. Follow hashtags related to your condition to find fellow patients. Comment on their posts, share resources, and celebrate wins, like a good lab result or day without pain.

Some hashtags, like #ChronicIllness and #SpoonieLife, unite broad groups. Others, like #Fibro and #ChronicMigraine, cater to specific diseases. Seek out both general and specialized communities to widen your network. You may find online friends who “get it” better than anyone in your offline life.

But use discretion in what you share—it’s crucial to remain safe. Avoid oversharing personal details and pictures, and don’t feel pressured to reciprocate if someone shares more intimate knowledge than you’re comfortable sharing. You can support them without compromising your privacy or sense of ease.

Crowdsourcing Knowledge

Just one post can garner responses from hundreds of spoonies who utilize the power of social media and chronic illness. Tap into this collective wisdom by asking questions. You might ask for tips on finding an understanding doctor, managing a specific symptom, or adjusting to a new diagnosis or treatment plan. Fellow patients often offer invaluable suggestions based on personal experience. Just be sure to verify crowd-sourced info with medical professionals when appropriate.

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Be sure to avoid spamming every group with the same question—tailor your asks to each community’s specialty. Chronic illness groups tend to be quite generous about answering member questions thoughtfully.

You can also learn through the resources others share. When a post resonates, look up that blogger (may we recommend AIL?), podcaster, or Instagrammer. Follow accounts known for informative content related to your condition. Turning to their feeds for education can help you filter the internet’s excess noise. And, if you find a great specialist, treatment, or product, pay it forward by sharing with your networks too.

Finding Validation

One of the most discouraging aspects of chronic illness is having your personal experience doubted or minimized. It’s isolating when friends and family don’t understand your daily challenges, and medical gaslighting also abounds. Social media provides a space to share your story exactly as you live it. Finding others who deal with such similar circumstances helps validate your struggles are real and that you aren’t alone in them.

Be honest in your posts to reap the benefits of social media and chronic illness, but remember your experience is not universal. Don’t undermine others’ experiences just because their symptoms or limitations differ from yours. Remember: there’s no one right way to have a chronic condition.

Amplifying Your Voice

Social media allows spoonies to raise awareness at a scope previously impossible. It provides a platform to share your perspective, advocate for change, and spotlight issues impacting the community. You might blog about inaccessible public spaces or healthcare policies that harm patients, or post informative threads explaining concepts like pacing or disability accommodations at work. This level of awareness can enact real change, influencing healthcare practices, legislation, and more.

When sharing your story, consider how race, gender identity, sexual orientation and other cultural factors intersect with disability and illness. Make sure your advocacy leaves space for diverse voices, and consider your goals. Do you aim to educate? Empower? Communicate an overlooked experience? Channel your purpose into thoughtful, constructive messaging that serves the broader community.

Share your own chronic illness story in our personal stories series!

Pacing Yourself

It’s easy to lose track of time on social media, but passive scrolling can quickly drain spoonies, in particular. Set limits on when and how long you use various platforms. Take regular breaks from screens to rest eyes and wrists. Use apps like Apple’s built-in screen time and focus features to block distracting sites during designated work and self-care periods.

Also, consider delegating social media tasks if possible. For instance, if running your chronic illness Facebook group is too taxing, ask a trusted admin or moderator to help post discussion topics or screen new member requests. Have a friend or family member ghostwrite a blog post for you to review and approve when brain fog strikes. Preserving energy allows you to engage online meaningfully, not out of guilt or FOMO.

Avoiding Comparison

It’s tempting to stalk social media feeds of our fellow spoonies and decide their life is easier or better. But these comparisons are rarely accurate or helpful. Someone’s glamorous selfie or fun vacation post hides the daily grit most patients face. And while vent posts validate your struggles, a feed filled only with them skews perception. For balanced perspective keep a few things in mind:

• Remember many posts represent temporary highlight reels, not complete daily realities.
• Avoid accounts that frequently trigger envy or despair. Unfollow those people who leave you feeling inadequate or drained. Surround yourself with hopeful, positive voices instead.
• Take comments about being “inspiring” or “brave” with a grain of salt. They often reflect non-disabled people’s skewed ideas about disability.
• Focus on finding relatable experiences, not judging how sick someone does or doesn’t seem. Comparing gets you nowhere.
• Share your authentic struggles and joys too. Vulnerability bridges gaps between our inner and outer lives.

The unique relationship between social media and chronic illness can provide friendship, knowledge, support, and voice like no other platform. At the same time, though, it also poses risks to mental health, privacy and limited energy. Navigating these spaces intentionally allows you to maximize benefits while protecting your wellbeing. The rewards are well worth the thought required!