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Surviving Itchy Days with Eczema Communities

April 30, 2020 Helen Piña
national_eczema_association

This article was published on the National Eczema Association blog.

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 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. It has done both, but 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)

As for 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.

← Polka Dot EczemaBest Hand Soap for Eczema Fighters During Coronavirus Situation →

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Helen; itchy and in Texas.


Helen; itchy and in Texas.

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Watch WebMD’s video on my eczema journey.

Watch WebMD’s video on my eczema journey.

Instagram

I’m traveling for work a bit more and got myself a portable air purifier to help with my inevitable skin allergy reactions from travel. Dust mite allergy life! 🙄
Contact dermatitis is … being allergic to this chair. 🙄#skinallergies #eczema #itchypineapple #dermatitis
Wild hair to distract from my red, itchy face and arms. Flare-ups happen. Could be waaaay worse. #dupixent #eczema #dermatitis
Healthy skin, grateful eczema fighter. #itchypineapple #dermatitis #dupixent
I’ve never been more excited to be told I have dry scalp (so NOT lice)! Kiddos are clean too. #mom #eczema # seborrheicdermatitis
I’ve chosen to restart Tacrolimus (carefully!) while on Dupixent to manage my eczema, after much consideration. And my skin is looking good! Link in bio for why and how I’m using Protopic/Tacrolimus. (And, yes, I know the possibility of w
An uncontrolled, spreading flareup. And on my face. For weeks. This isn’t what I signed up for when I got back on Dupixent.
The eczema gods tried to stop my workout this morning with burning, dry skin and an asthma episode. Nah; we got this! 💪🏼🏋🏻‍♀️ #skinallergies #dermatitis #itchypineapple
I’ve got a flare up “beard” 2.5 months after I restarted Dupixent (after a 5-year break). And it keeps spreading. Come on, Dupixent, kick in and be my Christmas miracle! 🎅🏽 #eczema #dermatitis #skinallergy #dupixentjourney #itchyp

Blog Archive

  • 2024
    • May 23, 2024 What is Contact Dermatitis? May 23, 2024
    • Feb 16, 2024 How I'm Using Protopic / Tacrolimus While on Dupixent and Avoiding Withdrawals Feb 16, 2024
    • Jan 11, 2024 Restarting Tacrolimus While on Dupixent Jan 11, 2024
  • 2023
    • Dec 17, 2023 3 months of Dupixent (again) and still flaring Dec 17, 2023
    • Nov 4, 2023 Why I Got Back on Dupixent 5 Years Later Nov 4, 2023
    • Aug 31, 2023 Double Benadryl Night Aug 31, 2023
    • Aug 15, 2023 Eczema and Skin Allergy Rant Aug 15, 2023
    • May 20, 2023 I’ll Put a Spell On It May 20, 2023
    • Mar 3, 2023 From Eczema Shame to Eczema Confidence Mar 3, 2023
    • Jan 18, 2023 ChatGPT Poem About Eczema Jan 18, 2023
  • 2022
    • Dec 10, 2022 Contact Dermatitis to Leather & Wood Dec 10, 2022
    • Jun 18, 2022 Affirmations for Taking a Shower with Intense Eczema Flareups Jun 18, 2022
    • May 16, 2022 What Is Topical Steroid Withdrawal Syndrome (TSW)? May 16, 2022
    • Apr 22, 2022 Itchy, weepy and crusty Apr 22, 2022
  • 2021
    • Dec 22, 2021 Merry, merry, itch, itch Dec 22, 2021
    • Oct 2, 2021 I'm Allergic to Old Books Oct 2, 2021
    • Sep 18, 2021 Scratching Bliss or Itching Torture? Sep 18, 2021
    • Sep 11, 2021 Drawing my Eczema Sep 11, 2021
    • Sep 7, 2021 Eczema on the back of my thighs Sep 7, 2021
    • Aug 14, 2021 What It's Like to Live With Eczema and Skin Allergies Aug 14, 2021
    • Aug 5, 2021 The Right Clothes and Accessories Help Me Avoid Flare-ups Aug 5, 2021
    • Jul 29, 2021 Getting Diagnosed With Eczema Jul 29, 2021
    • Jul 23, 2021 Leaning on Family When Eczema is Painful Jul 23, 2021
    • Jul 16, 2021 Five Tips for Loving Your Body this Summer Jul 16, 2021
    • May 27, 2021 What It's Like to Be a Mom With Eczema May 27, 2021
    • Apr 30, 2021 Did my Dirty Face Mask Trigger My Flare-Up? Apr 30, 2021
    • Apr 2, 2021 An Itchy Mom's Morning Apr 2, 2021
  • 2020
    • Dec 6, 2020 Patch Tested Again Dec 6, 2020
    • Sep 16, 2020 Polka Dot Eczema Sep 16, 2020
    • Apr 30, 2020 Surviving Itchy Days with Eczema Communities Apr 30, 2020
    • Mar 29, 2020 Best Hand Soap for Eczema Fighters During Coronavirus Situation Mar 29, 2020
  • 2019
    • Oct 22, 2019 Today’s Wish List Oct 22, 2019
    • Sep 11, 2019 Scratching is Bad – Even a Toddler Gets It Sep 11, 2019
    • Sep 4, 2019 What NOT to Wear Sep 4, 2019
    • Jul 3, 2019 A New Lipstick Jul 3, 2019
    • Jun 17, 2019 Skin Status: 3 Months Post Baby Jun 17, 2019
    • May 22, 2019 A Letter to My New Dry Patch May 22, 2019
    • Feb 16, 2019 Second Pregnancy - Stable Eczema While Off Dupixent and On Protopic Feb 16, 2019
  • 2018
    • Jun 14, 2018 Climbing the Corporate Ladder with Eczema Jun 14, 2018
    • May 20, 2018 Doing Well, Sans Dupixent May 20, 2018
    • Jan 31, 2018 From My Journal Jan 31, 2018
    • Jan 28, 2018 My Pregnancy with Eczema - Updated Jan 28, 2018
    • Jan 14, 2018 Top 5 Qualities of Best Allergists for Eczema Jan 14, 2018
    • Jan 1, 2018 How to Get Rid of Dust Mites on Winter Clothing Jan 1, 2018
  • 2017
    • Oct 12, 2017 Life with an Eczema-Inducing Dust Mite Allergy Oct 12, 2017
    • Sep 21, 2017 Allergy Shots for Eczema Control Sep 21, 2017
    • Sep 8, 2017 Vitamin D is Low Again ... And My Eczema is Flaring Sep 8, 2017
    • Aug 17, 2017 I'm Not Complaining; I'm Just Itchy Aug 17, 2017
    • Jun 17, 2017 Fragrance Allergy Holding Strong Jun 17, 2017
    • Jun 8, 2017 New Alcohol Allergy Probably Caused by Dupixent - UPDATE: Allergy definitely caused by Dupixent Jun 8, 2017
    • May 26, 2017 One Week After My First Dupixent Injection May 26, 2017
    • May 18, 2017 My First Dupixent Injection May 18, 2017
    • Apr 8, 2017 Tonight's Itchy Haiku Apr 8, 2017
    • Mar 25, 2017 My 3-Month Eczema Journey with a New Allergist. I Feel Pretty Again! Mar 25, 2017
    • Feb 12, 2017 Choosing Steroids Feb 12, 2017
    • Feb 2, 2017 My Vitamin D is Low! Great News! Feb 2, 2017
    • Jan 4, 2017 Avoid the Sun When Flared Up Jan 4, 2017
  • 2016
    • Oct 7, 2016 Someone Else's Eczema Cure Oct 7, 2016
    • Oct 6, 2016 Driving While Itchy Oct 6, 2016
    • Sep 20, 2016 Blissful Scratching Sep 20, 2016
    • Sep 4, 2016 Bloody Sheets and the Eczema Miracle of Cold Water Sep 4, 2016
    • Aug 12, 2016 A Letter to My Dog Aug 12, 2016
    • Aug 10, 2016 Eczema in the Hot Summer Aug 10, 2016
    • Jul 19, 2016 How NOT to Deal with Eczema Bleeding Jul 19, 2016
    • Jun 25, 2016 Skin Turning Jun 25, 2016
    • Jun 21, 2016 Return to Normalcy! Jun 21, 2016
    • Jun 17, 2016 A Good Day! Jun 17, 2016
    • Jun 12, 2016 Itchy, Oozy Babymoon Jun 12, 2016
    • Jun 4, 2016 Short Hair for Eczema Jun 4, 2016
    • May 31, 2016 Red Skin, A Haiku May 31, 2016
    • May 28, 2016 Helen and the Terrible, Horrible, No Good, Very Bad Day May 28, 2016
    • May 25, 2016 What's the Best Eczema Product? May 25, 2016
    • May 20, 2016 It's Your House, Silly! May 20, 2016
    • May 12, 2016 Steroid Conundrum While Pregnant May 12, 2016
    • May 9, 2016 Pregnancy Glow? More Like Facial Eczema. May 9, 2016
    • Feb 4, 2016 That Mat Girl Feb 4, 2016
    • Jan 1, 2016 Makeup and Skin Allergies Jan 1, 2016
  • 2015
    • Dec 26, 2015 Bitter Sweet Steroid Packss Dec 26, 2015
    • Dec 14, 2015 Sneaky Little Itches Dec 14, 2015
    • Dec 3, 2015 My Christmas Tree is Trying to Kill Me Dec 3, 2015
    • Nov 30, 2015 Regular-People Allergies Nov 30, 2015
    • Nov 25, 2015 "Don't Scratch!" Nov 25, 2015
    • Nov 22, 2015 The Sprint from the Shower to the Moisturizer Nov 22, 2015
    • Nov 19, 2015 Dust Mite Allergy and My Freezer Nov 19, 2015
    • Nov 17, 2015 Genetics, Eczema and Skin Allergies Nov 17, 2015
    • Nov 15, 2015 The Nightly Ritual Nov 15, 2015
    • Nov 14, 2015 Running and Working Out with Eczema Nov 14, 2015

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