Linette's Journey with Eczema
The Editorial Team at AtopicDermatitis.net is highlighting people in the eczema community and their healing journeys in a series of Instagram Interviews. We got to know Linette (@linettero) who shares about how she recently planned her very own eczema meet-up and how music and humor help her cope.
Linette's eczema and TSW story
I have had eczema since I was a child of 3 years. I came to the realization just this past year that the symptoms/bad flares I have been experiencing my entire life are more than likely varying degrees of topical steroid withdrawal (TSW) rather than “bad eczema flares.” The very first time I experienced red skin syndrome (RSS) and TSW was when I was a child. I cannot fully remember each flare, but I do recall the constant itchiness, torture, isolation, and looking down at my own body, in awe and fear of the oozing raw skin before my eyes, the piles of flakes accumulating on the floor.
My worst TSW flare was about 10 years ago, and my current and last one is the one I’m experiencing now. I stopped all steroids on December 2nd of 2018. I’ve been doing Moisture Withdrawal (MW) for 98% of the time for a year now, and started No Moisture Treatment (NMT) since this past May 20th. Since starting MW, I noticed my skin learning how to keep itself moisturized, and since NMT I have noticed a difference in the overall improvement of everything, especially my face!
I actually found myself naturally gravitating towards a combination of MW and NMT without even realizing that these were modes of treatment. Just by listening to my body, I realized that constantly damaging the skin barrier by moisturizing it and not allowing it to dry was wrong. I had drastically lessened showers and changed to only a handful of baths a month, but of course cleansing the important parts every day. I would moisturize sparingly, only when I had to leave the house.
I was so happy to find MW and NMT because it meant that I was right in listening to what my body was telling me, rather than listening to doctors and general thoughts of society that told me my skin needed to be moisturized.
Itchiness that drives me mad
Editorial Team: What is the most difficult symptom you deal with currently?
Linette: The itchiness. It drives me mad. Apparently eczema is the worst non-terminal illness. And I’m pretty sure it’s because it’s not only it’s own form of torture, but on top of already being an illness, it guarantees to worsen your condition because it itches. Which of course reinforces the itch-scratch cycle. Sometimes though, if done right, itching and then drying properly can be beneficial as seen in NMT. But that’s another story.
How to plan an eczema meet-up
Editorial Team: You recently held a meet up for eczema warriors in the SoCal area. What led you to planning the event? What was that like?
Linette: For many years now, I had always thought that there had to be Eczema Meet-Ups going on. There just has to be because I know that many people suffer from this illness. But then I realized the nature of eczema and how most sufferers, like myself, are probably incredibly conscientious of being seen in public. When I finally started to openly share my story on various social media platforms, I decided to see if there were any Meet-Ups near me.
I put my idea out there online
After a light google search, I didn’t find anything regarding Eczema Meet-Ups. So I decided to find out people’s opinions on an in-person Meet-Up. The response I received on Reddit was enormous! I couldn’t believe it. I received enthusiastic comments from around the world telling me that this was a fantastic idea and how they all wished there was a Meet-Up near them! I was shocked at the response, because surely, I couldn’t be the first person to think of this, yet the responses made it seem to be so. So, I did it!
Limited funds and finding a venue
Because I’m unemployed due to my eczema/TSW, I had to put this event together on a budget of basically $0. So I started sharing my idea and goal with friends and soon enough I had friends who were offering donations of food, time, and help. I also had to find the perfect location for all of SoCal and also a place where we could have our own private meeting so no eczema/TSW Warrior would have to feel anxious walking past huge groups of people like at an outdoor mall or restaurant. Luckily, I booked the Rose Center Theater in Westminster, the perfect central location and a theatre I had performed at many times before. Because I had performed a few roles in that theatre, my director was so lovely and donated the space to our cause.
Accommodating dietary restrictions
I made sure to ask everyone about their allergies beforehand, but since only one person responded, I decided to go with a Vegan, Vegetarian, Gluten Free, and Organic spread. We had Chipotle cater and after speaking to their manager a day before, he threw in a few extras at no charge. For dessert we had Gluten Free, Vegan, Raw, and Refined Sugar Free options as well. After being in contact with the National Eczema Association (NEA) for a few weeks at that point, they also sent me some NEA swag and personally donated some funds to cover the catering. We also had some dessert donations from a local cottage bakery. Basically, there was so much love and support from everywhere, and I am forever grateful.
Planning is stressful, but it was worth it!
Unfortunately, always striving to be the perfect host, I overstretched myself a bit and my eczema erupted the days after the event. Now I know to make an event of this magnitude happen with a team, rather than just myself! But...it was all worth it. I was so touched when each attendee made sure to come up to me to say thank you for planning this. There were warriors who thought they were the only person with this illness. There was a warrior who had no idea about the new biologics that were coming out to possibly cure eczema. And it was apparent that everyone there needed to be with their community.
Healing, chatting and connecting
The healing that happened in that time and space was immeasurable. And so much love and knowledge was shared. I am beyond grateful that it went so well! We all connected instantaneously and afterward, everyone just kept talking, even after we were kicked out haha. So basically I put this event together because it’s something that I wanted for myself. I wanted a safe space where I could connect with and just talk to fellow warriors. And if I wanted that, I figured that there were many others who would want that too.
The power of music and humor
Editorial Team: Your Instagram profile includes posts where you've made light of your life with eczema as well as clips of songs you're singing. How has humor and music helped you cope?
Linette: It has helped me tremendously. “Where words fail, music speaks.” When you have that much emotion pent up from the frustrations of your illness - a lifetime of no one understanding what you are going through, even the doctors who claim to be the professionals.
You have to laugh
When you do everything “right” but your skin still rebels against you. When everyone you come across instantaneously judges you after taking in just one glance. When your bed which should be your refuge is the place you fear most due to the endless itch attacks throughout the night...that’s when you sing. That’s when you laugh. Because what’s the alternative? You have to laugh, because this is a pretty ridiculous and unpredictable disease. Singing helps me focus on something other than the itch. When I’m on stage performing, deep into a role- it’s the only time I’m able to forget about my eczema/TSW. Laughter reminds me to not take this life too seriously, especially with an illness like this. Plus, I love singing for people and love making them laugh, so it’s a win-win :)
Sharing your story through the pain
Editorial Team: Anything else you'd like to add?
Linette: I’ve been wanting to share my story for over a decade now. I figure that I’m going through this pain anyway- might as well have someone benefit from it. Also, that quote about being the person you needed when you were a child really sits with me. I just hope that more and more people share their stories as well and expose the truth about eczema & TSW, so we no longer feel the need to hide, and can rid ourselves of this inherent shame, so that no child nor teenager ever feels ugly and alone again, and that children and adults alike are able to find the mental and emotional support they need.
Follow Linette's healing journey on Instagram at @linettero!
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