How Social Media Has Given Eczema a Platform
Social media, and the internet in general, has been a game-changer when it comes to unlocking knowledge. We now can get insight into the daily lives of our favorite celebrities, go behind the scenes to learn more about corporations and politicians, watch a day in the life of a deep-sea diver, and so much more.
More importantly, social media has opened doors and allowed the sometimes-hidden world of chronic conditions and diseases to thrive. As someone who lives with chronic eczema, and the stress, discomfort, and loneliness that comes with it, I’m grateful social media can help others like me connect with each other, share our stories, and find treatments that work.
So how has the eczema community benefited from their social media presence? Let’s dive in.
Social Media Broke the Silence
When platforms like Facebook, Twitter, Instagram, Pinterest, and others were popping up, in my experience, eczema wasn’t really talked about or part of public discourse. Fortunately, social media had impeccable timing, especially for people with eczema, for whom the only available treatment options were extremely slim. Many skincare companies didn’t cater to severely dry skin, so the only over-the-counter treatments were generic products with a strong chemical smell. Another option was a steroid medicine prescribed by your doctor, or potentially dangerous alternatives, such as off-the-market medicines with no guarantee for improvement. Severe eczema patients were at their wit's end trying everything and anything to help alleviate their pain and soothe their skin.
Once social media took off, it felt like more eczema recognition and support followed–not to mention the increase of non-prescription products developed for people with eczema. Small companies that manufactured eczema creams and other items were able to reach the online eczema community, benefiting both seller and buyer. Patients like me started to be able to research and seek out better treatment options, based on the past experiences of others. Social media and the Internet in general also brought about strong visuals. Before social media, the only visuals of eczema came from a 1980’s diagram in the doctor's office. Now, people are documenting and posting about their eczema for many to see. I’m not sure who first took that bold step, but I thank them for utilizing this tool to encourage others to proudly show their skin too.
Bridging the Gap Between Doctor and Patient
Before social media became available, it felt like there was a huge disconnect between the medical community, patients, researchers, and caregivers. Instead of collectively working as a community, it seemed as if we were functioning as dispersed puzzle pieces. The pieces were there, but no one took the steps to start fitting them comfortably within each other.
I spoke to a lot of patients and caregivers who perceived the medical community to be cold and dismissive. Like me, they dreaded going to appointments and some even avoided them altogether. They were frustrated, desperate, and felt like they weren’t being heard.
And on the medical side, it was as if researchers were limited due to a lack of proper funding for eczema research. To the eczema community, it was as if eczema wasn’t seen as a serious-enough skin condition among more common ones such as acne or skin cancer.
Thanks to social media, this appears to have changed. Patients have been given a platform to voice their concerns and reach out to direct sources. The strong eczema community on social media has led to more awareness, and we’ve seen more research dollars going towards effective treatments; I don’t know if they’re directly related, but I have certainly noticed this trend. In my opinion, patients are now better able to understand their condition and work in partnership with their doctors, thanks to online educational resources and relationships with other eczema patients. The pieces have started coming together as social media has allowed the dots to be connected.
Starting a Movement
The reason why talking about eczema has been so successful on social media is that it’s not about one individual; it’s about the community. All of us, collectively as a whole, are working together to reach a goal–to raise awareness and prompt a new focus on treatment. It started with the brave souls that showcased their skin in photos on social networks and blogs. From that point on, there’s been a snowball effect and this community gains more momentum day by day.
People from all across the world now share their stories. Those that suffered in silence have begun to open up. Today, people looking for more information about eczema can access pictures, blogs, chat groups, websites, podcasts, and other media. People now can see a version of themselves in others. They share tips, tricks, and console one another as they recall the physical and emotional pain eczema has caused. It seems that doctors, researchers, and corporations have noticed the activities of the online eczema community, and they’ve started listening to us more. It’s not just another way to chat online; I like to think that social media helped people with eczema start a movement.
If you’re new to eczema, or new to social media–or both–start by searching “#eczema” to find people and posts that focus on our condition. Look around for groups, like those on Facebook, filled with individuals trying to figure out their eczema just like you. By reading their stories, sharing your own, and keeping an open mind, people with eczema can truly benefit from staying connected via social media.