Meet Linette Roungchun
Name: Linette Roungchun
Occupation: part time blogger, full-time healing TSW* (lol)
Location: Southern California (South OC)
Skin condition: Severe Eczema/AD/TSW
I feel like people with skin conditions often have a one-line explanation that they use to explain their skin condition to others. Tell us yours.
I like to explain to people that what happens to and is expressed on my eczema is what happens to most people, except that my illness makes it 10-20x worse and makes it an incredibly itchy and visible affair. For example, if you take a magnifying glass or just look very closely at the skin of a person with normal health, you can see all their fine lines, wrinkles, and bumps. That’s what our skin looks like! Without the use of a magnifying glass or getting in someone’s personal space. I also feel that this illness has made me incredibly sensitive to most things, so the mere scent of a perfume is a lot for me to handle, the roughness of a material can be very uncomfortable, and the change of seasons can really mess with my skin, amongst many other things.
What are you up to in life right now?
Just trying to do my small part in contributing to the Eczema and TSW communities. For many, there is not much you can do while going through TSW. But this, I can do! I was recently hired to write and moderate for AtopicDermatitis.net and am currently working on a few pieces. I also frequent the Eczema, TSW, and NMT pages on Facebook, and Reddit, along with posting to my Instagram, where it all started.
We just met each other IRL at Eczema Expo. For me it was so moving and empowering to be in a room with hundreds of other people who have the same skin condition. I'm curious what that experience was like for you.
I have to agree with you, it was incredibly moving and empowering—life-changing for me. It is one thing to hear about an event like this, but totally another thing to be immersed in it and taking in every moment. To be able to stand in a space anywhere on this planet and not be questioned, judged, ridiculed simply for existing? To not have confused looks and advice shoved in my face but rather warm looks of complete understanding and just words of support and excitement? Priceless.
I love it when you post videos of yourself singing on Instagram, because you have this truly amazing voice, and you used to be a performer until you took a career break to focus on managing your skin. How did you know it was time to stop working? What was it like to give up doing something that you love?
Thank you so much for the compliment and for even listening! I actually had still wanted to perform even when sick, and this past holiday season, a good friend needed a Soprano for some caroling gigs around SoCal. I went to 2 rehearsals before I had to admit to myself that I couldn’t perform. It was when I realized that there was just no way I could wear a bra and let alone a rough and stiff costume when my chest and nipple area was constantly oozing and when even a piece of tissue would graze my chest, my thin, sensitive skin would recoil in reflex. At that point I had put in so much work memorizing the music—I just wanted to perform. But I have faith in healing and know that I will be able to return to music and performing in some capacity. With the love and energy it requires to keep our skin happy, and the fact that flares can really painfully restrict mobility, I may never be able to pursue auditioning for that National Tour, West End and Broadway life like I had hoped. But I am determined to still find fulfillment of some sort in the music/theatre world! They say that some of the best voices come from people who have been through an immense amount of hardship, pain, and darkness in their lives. So...maybe I still have quite a bit to contribute! Just sayin’!
TSW is not well understood, and many doctors don't believe that it's a real phenomenon. What has it been like explaining your condition to doctors? Are you managing your skin yourself right now, or are you able to access supportive care?
Sometimes I feel like I’m talking to a wall. Usually the doctors and derms just nod and kind of acknowledge that TSW exists. The doctors are just not invested in it the way I am. Well, that’s what I thought. But now after the Eczema Expo and meeting Dr. Peter Lio and even newer doctors like Dr. Dathan Hamann, I now just realize that I need to find the right team of doctors to fight for me. Most of my life, I just didn’t trust doctors and felt I had to go at this myself. Because when I did listen to doctors, they not only had terrible bedside manner, but would constantly prescribe me these ointments that put me in the position I am in today! But now I’m slowly finding some doctors whom I trust, but it’s a matter of building a team of doctors and for certain aspects of my condition. So I’ve found the doctors I trust for when my eczema is manageable. But as far as TSW, I have yet to find doctors I trust, because the first time I went through TSW 10 years ago, the doctor I saw prescribed me oral and topical steroids to end my year of withdrawal from TS. At that point I had only glanced at the ITSAN site, and was barely surviving day to day, so I was ready for any relief possible. I wish I had done my research at that point, but the Internet wasn’t what it is today, and I just needed my life back. But now, guarded and guided by all the knowledge and body-awareness I have now, I believe, thanks to Dr. Lio, I might be on track to finding that right doctor here near home. Well, near as in an hour away at UCSD, but that’s nothing compared to a flight to Chicago to see Dr. Lio!
Where can we keep up with you?
@linettero on Instagram, Linette Roungchun on Facebook and Youtube(oh yes, so original!). But I’m mainly active on the gram!
*Editor’s note: Topical steroid withdrawal is not well understood by the medical community, and many dermatologists do not believe that it is a real condition. To see the the National Eczema Association’s scientific paper on topical steroid withdrawal, click here.