Carrying On with Ciena
The times when we feel the most lost are when we may shine the brightest. For Ciena, a star in the making, her light is just beginning to glow.
A rising star
Ciena Rae Nelson, 30, has rooted beautifully into the TSW/skin community. She has been sharing her story for quite some time now and is a moving force, helping others through their journey with curiosity at her core.
A new diagnosis
When she was around four years old, she began showing signs of skin issues and was diagnosed with psoriasis about one year later. She lived with this diagnosis until recently, adding psoriatic arthritis to the list. However, at twenty-nine, she became aware that her diagnosis may not have been correct. Perhaps, after all, it was severe eczema or TSW, topical steroid withdrawal.
The medications she tried
"I was on Remicade for many years," she noted, running through all the treatments that have coursed through her veins, "then tried it in conjunction with methotrexate. When I went off of those, I tried Enbrel, Simponi, and Humira. None of these worked for me."
I'll never forget, while I was shooting my TSW documentary, Preventable, I watched a Humira commercial flash onto the television screen. I munched on my Chipotle in disbelief as a slew of side effects ran across the screen. It was shocking how one drug meant to help one ailment could have such scary consequences.
"I have also used Protopic, Elidel, Flucocinide, and many others I can't remember."
She searched online
Nowadays, learning about new things over the internet is so easy, including skin complications.
Ciena had never heard about TSW or the dangers of topical steroid overuse until she hit the web.
"Instagram!" she exclaimed, so grateful for the awareness. "I was involved with the skin community and helped create the IG psoriasis community, and slowly started seeing people's pictures warning against long term steroid use."
The value of community
This sparked an interest. She knew that community, getting involved with all these souls, would be imperative to her healing.
"I underestimated the value of other people being able to relate to me and vice versa. Having people to lean on that you can truly count on when things get rough saved me."
Because of her drive, Ciena wanted to do more for this community that saved her.
On Fridays, she has been interviewing different people in the skin world. She had shared her story in multiple ways for so long that she felt it was time to highlight others and what they bring to the table.
"I've always been interested in other people, and trying to understand them as whole human beings," she stated. "I want to get to know the community more and know what makes them tick - what their experience is and has been."
These talks have been such a lovely addition to each week and have been showcasing so many amazing voices, like Linette Roungchun (@linettero), Emma Wellwood (@chattin_skin), and Rennie (@rennie.soga).
In front of a camera
If Ciena seems like a natural in front of the camera, it's because she is. Along with being an advocate for her skin, she is a maturing actress. However, that profession, in itself, is a scary pursuit when dealing with a chronic health condition.
She's afraid she'll lose work
"The most difficult thing," she revealed, "besides the physical pain is the fear of losing work because I might look a certain way or feel like a burden to the hair and makeup team. I am expected to show up as a perfect blank canvas, but I am a messy human with a story of my own, and I cannot control or predict my appearance or health in the ways that some others can."
But, she is a fighter and a beautiful example of what we all should be when faced with these types of anxieties and fears.
"I always have to remind myself that I am not my appearance. That my skin clarity doesn't determine my value or worth or work ethic, because others will make these inferences and conflate the two whether I like it or not."
Ciena will be passionately juggling her acting career while also aiding the skin community. She has a few projects that she is truly excited about, some revolving around TSW and some around narrative scrips for film.
"This year, I am hoping to finish a few of these projects that either TSW or life interrupted. It felt like my life was on hold, but luckily my skin hasn't been interrupting my daily life for a little over 3 months now. Here's to hoping it stays that way."
Cheers, Ciena. I hope so, too!
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