Skin On Fire Documentary

Platforms such as this have given us a chance to raise our voices in the skin community. Not long ago, it was unheard of to be so vulnerable in sharing our stories, our challenges, and our outcries.

Eczema and TSW are no laughing matter, and it has taken such a long time for many of us to come to terms with our condition and be strong enough to fight for ourselves.

One way, through writing, we have been able to disseminate information and educate others on what we go through. But it's easy to ignore the true pain we endure until someone sees it.

Documentaries on TSW

When it comes to topical steroid withdrawal, there was only one documentary, Preventable, produced in 2019. I, myself, created the entire film. It was a way to bring together many voices in hopes of gaining awareness of TSW and bringing to light what the skin community goes through on a daily basis.

But recently, two new documentaries have made their way onto the scene. It's amazing to see more voices rise to the surface to help others.

One such documentary is Skin on Fire.

The storytellers

Taking on the endeavor of unmasking TSW, well-known director James Keach created a film crew and assembled a cast of beautiful and vulnerable humans who were willing to divulge the hardships of living with such a horrific skin condition.

Three of these subjects were Linette, Luke, and Du Pree.

Though the film has its critiques, no one can deny how powerful these three voices are in the film. Their raw honesty is captivating and moving. I am forever grateful for their continued fervor to enlighten the world on this condition and share some thoughts with me.

What made you want to be a part of the film?

Luke: They contacted me through IG and asked if they could interview me. I was immediately intrigued, and the phone interview went great! I loved the concept they presented, and nothing seemed to misalign with my stance on things. I am always down to tell my story and experience, especially if it will prevent someone from using steroids.

Lauren: I knew that Skin on Fire would bring a lot of visibility to the TSW community and educate those who have no knowledge of TSW. I also looked up PCH Films and was very impressed by the other documentaries they had produced. When they reached out to me, it was a no-brainer to be involved.

Linette: The fact that PCH is a legit, award-winning film company with a big name behind it alone gave me hope that there was a chance that the right eyes would be reached...

... I've been told I'm very upfront and honest with exactly how things are, especially my condition - and I think the TSW community needs to stop being so polite and telling everyone we are "doing okay" or that we're "fine" because we are not okay.

What part of your skin journey is the hardest to speak about?

Luke: I do remember, while being interviewed, how heavy it felt when I was talking about the moment where I stared at my gun, trying to figure out if TSW is too painful to carry on. That was a pivotal moment for me that helped me realize what I cared for and loved most about life. It shifted my perspective from being a willing victim of TSW to being a willing warrior against TSW and fighting to get through it.

Lauren: Going through topical steroid withdrawal has been the most isolating and emotionally taxing experience of my life. Talking about the darkest moments of my journey and the emotional toll they've taken are definitely hard to speak on.

Linette: The living day-to-day with this condition, especially when you're still attempting to live a normal-ish life. All the icky stuff I don't like thinking about because I've been living with TSW on and off since I was a child, so I've had a lifetime of pain and discomfort.

Was anything censored that you want to share with the eczema community?

Luke: Honestly, I cannot remember if I said anything that was censored out that I felt needed to be in the film. It's so hard to capture every aspect of TSW damage that is done to our lives. I do wish the film was even longer, and I sincerely hope it has a sequel or becomes a series to tell everyones' story.

Lauren: I can't remember everything I said in my interview, and I don't think any of my comments were censored, but they could only fit so much into a 30-minute documentary. If I were to add to what I said in the documentary, I would say that I truly believe that healing from TSW requires getting to the root cause of the ailment that called for the use of steroids. My frustration with doctors has always been that they didn't make any effort to figure out why my skin was breaking out, or they would give me a one size fits all protocol instead of investigating the causes of my various health issues.

Linette: I don't know about censored, but as far as material that was left out of the final edit, let's just say that there are more medical professionals out there that agree that TSW is real and agree with how the community sees and thinks about TSW.

Learn more

Curiosity is a virtue. These two films, plus another called My Life During Topical Steroid Withdrawal, are powerful tools to learn more about topical steroid withdrawal.

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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The AtopicDermatitis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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