Advocacy and Healing with Luke

Some of us like to sit back and go on our own personal journal with our skin. We focus solely on the moment at hand. But some advocates, like Luke, are bold and brave in sharing their story.

He even has the coolest "What is TSW?" hat!

How did Luke get his start advocating?

Luke Jacobsma, 39, lives in California. He knew he wanted to be a voice for those struggling with their skin and snagged an amazing opportunity to be a part of "Skin on Fire," a documentary on topical steroid withdrawal.

"It was kind of surreal," Luke reminisces. "It's quite a lot being on the hot seat with lights and cameras on you talking about a condition that completely altered your life in the most dramatic way."

He recalls that feeling of watching the production crew setting up and realizing his story was in good hands. That he hoped people resonated with his own journey. But he also hoped that it would steer people away from leaning on steroids for their skin health.

How is he raising awareness now?

Besides the documentary, Luke is now venturing into the podcast world.

"I have been interviewing some amazing guests and advocates that have shared some amazing insight and stories about their experience and journey through TSW," he mentions. Called, "What is TSW," he hopes it can act as a catalyst for more change around the topic of topical steroids. Because there is so much back and forth on this subject, Luke knows how comforting it can be for others to hear stories similar to their own.

"I have big plans for it to grow, unite the TSW community into one voice, and get a bigger conversation started."

What does his health routine look like?

Being four years into his withdrawal, Luke has found it hard to stay motived in some areas.

"Right now," he confesses, "I don't really have a solid routine that I am following. But, I am trying to get back to daily celery juice, daily exercise, a plant based diet, and as much quality sleep as possible."

Sometimes, it really is difficult to find that routine when we are struggling with our skin. But Luke finds grace during these times, and we should, too. He is resigning to giving his body time and rest.

How is he mentally and physically healing?

Oh, the mind game. If only people realized that a skin condition comes with much more baggage than our outside layer.

"Mentally, I feel optimistic but a bit disconnected," Luke reveals. "This has taken so much of my focus, it often feels like I forgot what life is supposed to be like - as if my goals and dreams have all drifted to the back burner so much so that they almost seem irrelevant and too distant."

Many of us have to give up parts of ourself due to our skin health. We concede in knowing that plans will be cancelled and dreams will be put on hold. It takes a toll on the mind and heart. Yet, we are more than the skin we are in. There comes healing when we allow ourselves that time of reflection and respite.

"Physically, I am dealing with a mild flare," he shares. After four years, he finds the flare in his elbows to be extra trying. It's more painful than usual. "Its never felt like this before, so I am not sure what to make of it yet."

However, when I ask if he's considered trying a pharmaceutical, it is an adamant no. "I practice pharmaceutical sobriety," he states. I love the answer. I've never heard it delivered in such a way, so I respect his relationship with his body and healing journey.

What message is he trying to project into the community?

"Be proactive in your healing," Luke concludes. Plain and simple.

Luke is someone determined to live exactly in his skin and figure out ways to manage without the interference of mainstay, dermatological treatments. He wants to encourage others to do the same.