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Surviving itchy days with the eczema community

Helen Piña, a social media-savvy eczema warrior and blogger, walks us through the various platforms she uses for engaging with the eczema community.

Surviving itchy days with the eczema community

I’m a chronic eczema warrior, and many times, I’ve felt confused and alone.

Luckily, I’ve found emotional outlets to support me through my eczema journey. Social media platforms are full of eczema groups, forums and influencers that provide support 24/7.

You are not alone

Whether you are dealing with eczema or have a loved one with eczema, there are many eczema communities to help you learn, feel supported and vent when you need it.

It’s comforting just knowing that others are on a similar skin journey and that you are not alone. Also, keeping in touch with the community lets you see what others have tried and helps you keep up with the eczema industry.

Express yourself

Online forums also provide an outlet for discussing your eczema without overwhelming your loved ones. I needed an outlet specifically for discussing my skin so that my relationship with my partner didn’t revolve around my eczema.

Four years ago, I started a personal skin allergy and eczema blog (Itchy Pineapple) as a therapeutic journaling medium with the hopes that it would also help fellow eczema fighters. Indeed, the best part for me has been the many people that have contacted me to either ask for support or offer advice.

Find your tribe

My favorite online eczema communities are on Instagram, Reddit, Twitter and Facebook, and I use them for different purposes. My activity ranges from from reading and following to commenting and posting.

If you are hesitant to post publicly, you can send direct messages to individuals or even post anonymously on certain platforms. I created social media accounts specifically for my blog’s brand, but many people post from their personal accounts; either is fine. Below is a summary of the online communities I follow and how I engage on them.

I use Instagram to post photos of my skin during good and bad days, and to be exposed to other eczema journeys by following eczema influencers and hashtags.

Tip: search “eczema” and specific hashtags and organizations to follow, such as:

@nationaleczema

#eczema

#eczemaproblems

I use Twitter to vent in a burst of limited characters.

Note: There are many eczema accounts available to follow, so search and follow your favorite. Trending hashtags include:

#eczema

#eczemaproblems

Facebook groups are similar to Instagram but with more Q&A opportunities. These groups help me keep up with the eczema industry and thoughts on the latest eczema medications.

Tip: There are many Facebook eczema groups available, some of which are focused on a specific topic (e.g., TSW, medications), so select the ones most relevant for you.

Eczema Support Group

Atopic Dermatitis/Eczema

I use Reddit to get swarmed with support or find answers to questions. I engage with the eczema and skincare subreddits when I need help.

Note: Reddit is an anonymous forum.

r/eczema

r/skincare_addiction (people mostly post about acne, but it’s a popular skin forum and helpful to those who post about eczema)

Blogs: I write on my own blog, but there are many eczema blogs available and I enjoy reading relevant and insightful content. Tip: If you enjoy certain eczema influencers on social media sites, check to see if they have a blog.

National Eczema Association’s Blog

Use Caution

As with all things on the internet, take everything you read with a grain of salt.

Get confirmation from your doctor before taking advice from someone else or coming to a conclusion based on what you read.

If you communicate with others online, be prepared to engage with opinionated people who may disagree with your approach.

Helping yourself helps others

What’s great about interacting with the eczema community online is that your engagement helps others. It’s a win-win situation when you collaborate with fellow eczema warriors.

For example, if you ask a question and get answers, it’s very likely that those answers helped someone else.

If you are having a bad skin day and vent online, it could help someone else who is also having a bad skin day and no longer feels alone.

From online to in-person

Online eczema community activities can lead to in-person engagements. I’ve met with a few of my local blog readers after they reached out when they were going through a tough time and realized we were in the same city.

What if online communities aren’t for you? Then find your support network elsewhere. The National Eczema Association hosts an annual Eczema Expo, which is a great opportunity to meet others on a similar skin journey. I find it quite special to be able to share eczema stories in person with fellow eczema warriors.

As you hear about other people in or near your network that have eczema, reach out to them. These folks could be your family, friends, coworkers, acquaintances or strangers.

One eczema warrior is a source of strength for another, so don’t take this journey on your own.

 

Helen Piña is the creator of the Itchy Pineapple blog and can also be reached on Instagram, Twitter and Facebook.

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