Get to Know: Ciena Rae Nelson

Bodewell Editor | May 4, 2020

We caught up with actress and Bodewell user Ciena Rae Nelson to learn more about her advocacy journey, the importance of community and what she’s learned along the way.

Ciena and her sister Whitney, 1993

Bodewell: You’ve established a solid following on social media and work tirelessly to advocate for chronic illness and mental health - of which eczema and psoriasis has played a large role in your own journey. What led you down this path to becoming an advocate?

Ciena Rae Nelson: I started doing advocacy work out of a personal need. I’ve had eczema and psoriasis since I was really young and started showing symptoms at age 2. I went on biologics from age 10-16, and during that time, I didn’t have any major symptoms. After weaning off biologics for 2 years, my symptoms re-appeared worse than ever before at age 19.

When I went away to college, I stopped all of the medication I was on because I had been symptom free for a couple of years. My skin problems started coming back but I was so focused on everything I was doing that I just tried to will it all away and ignore it. I was under a lot of stress and making a lot of poor lifestyle choices - not sleeping very much, drinking and eating poorly. I tried a couple of different medications, but they just didn't work for me. I also felt like my teachers, my professors and my classmates didn't really understand the severity of what I was going through and so all of these things kind of exacerbated and my conditions got much worse. Everything I was focused on was kind of falling apart and it felt like it was really out of my control.

Ciena with her aunt, Paula, 2009

I ended up in the ER and had the worst flare up I've ever had. The doctors in the ER didn't know what to do with me other than give me some water and tell me to hydrate. I was kind of shocked. They had to call my doctor back in LA and ask him what to do. That was definitely my breaking point because I had to leave school.

I’d spent my whole life hiding what I was going through and as a result of that it became a pillar of my personality to just push through and not speak up. I had a boss at the time who said this thing I’ll never forget - ‘closed mouths don't get fed’. I realized the importance of that because I couldn't just rely on myself anymore. I needed to rely on my family. I needed the support of my friends. I needed the support of my doctors and healthcare professionals. At that point, I realized I needed to do more for myself than I was doing. I wasn't living as my best self and I needed to shift my focus to my health because if I don't have that, then I don't have school, I don't have acting - I don't have anything. It taught me a huge lesson and I think that's a really big part of who I am and what I do now.

Ciena at home, October 2018
Ciena at the emergency room in Oakland, 2013
Self documentation of psoriasis flare up, May 2019

After getting out of the ER, I came home and went to see my dermatologist and he gave me this really strong medication. I took like one dose of it and it completely went away, like overnight. I didn't finish the rest of it. That gave me a kick start. Like, okay, I'm feeling better. From there I finished the school year at my parents' house, and took all my finals and everything. I think that's around the time that I started posting about it. Social media was a way for me to tell everybody at the same time - to out myself and it was really validating for me. It was a way for me to legitimize what I was going through and to show people the severity of what I was dealing with. It was also a way to reach out in the hopes of connecting with anyone out there who could potentially understand me. If I didn't find anyone who understood, I was going to make whoever was listening understand. It wasn't long before a journalist from Hello Giggles saw some of the posts that I did on social media and then she wrote a story about it. I guess it all blew up from there.

Image courtesy of Mic

Bodewell: What was it like the first time you shared what you were going through on social media?

Ciena Rae Nelson: At first it felt weird to post about it. I had like 500 followers, just my friends and family, and so it felt super intimate. Like how musicians say performing to five people is way worse than performing to like 100. It was strange.

I had the initial coming out to that small group of friends and I think at first people didn't know how to respond. Some were like ‘I didn't know that you struggled with this’ or they just wouldn't interact with it cause they already knew. So initially it was just a very small circle but then it started growing. Other friends came out afterwards too. Once they saw that I was trying to normalize and talk about it, it became easier for my inner circle to say ‘I struggled with this too’, which was cool.

Selfie in a shopping mall fitting room, 2019

I think allowing myself to be seen in that way was the most important part of it because when you're that vulnerable and when you're that open - what else do you have to be fearful of? It's like, now my biggest secret is on my sleeve, this thing that I carry around with me that causes me so much pain and suffering - now people know about it and they see it, I don't feel like I have to hide anymore.

It kind of went from there. I think people saw me doing it and then started doing it for themselves and I'm so happy that people jumped on that train because I think that it had, and still continues to have, the same effect for them.

Ciena in London, 2018

Bodewell: What’s it like having a community of support through social media and your advocacy work?

Ciena Rae Nelson: It's so cool to see how far it's come in such a short space of time and how many people are brave enough to attach a hashtag to their photos and put themselves in that category. That didn't really exist when I started posting, I think I actually created some hashtags!

There's just something really special about connecting with strangers in that way. They have no reason to go on my page and message me. There’s no reason from them to say all of these supportive, loving, kind things. They don't know me. I don't know them, and yet because we have a shared experience, they're inclined to do that. That has become a really big support system for me. I'm very appreciative of it.

Los Angeles, 2020

Bodewell: Tell us about your first experience with Bodewell?

Ciena Rae Nelson: I remember at first I didn't want to buy it. I figured if a biologic doesn't work for me how could this? I was struggling and I couldn't find anything that worked so my boyfriend actually bought it for me.

I tried it and I really liked it. What struck me initially was that it lasts for a really long time! I remember I put it on before bed and I woke up and my skin just felt really good and hydrated and smooth. I had this moment where I was like, ‘whoa, that's different’. It was really noticeable.

After that I started only buying Bodewell because it just worked so well for me. I was so impressed that I actually reached out to Bodewell and asked them - what is in this? They were super receptive and sent me all this paperwork on all the ingredients and all the things that they tested. It just really worked for me.

Los Angeles, 2020

Bodewell: What’s helped you turn things around when it comes to looking after the health of your skin?

Ciena Rae Nelson: It changes a lot given my symptoms are chronic but I think there's a whole other element to this which is acceptance. For a while it was like I prayed or pretended that I was just like everybody else and that I was “normal”. It sounds silly, but for most of my life I didn't even like to put on creams and serums and would just suffer and sit through it. So once I felt better about accepting that I have an ongoing condition that sometimes means I can't live my life in the same way other people do, I really started taking care of myself in a new way.

The first thing I did was to create a routine which didn't exist before. I'm super conscious about what I'm eating now and making sure I’m staying hydrated, exercising and listening to myself and my body first and foremost. I meditate. Sometimes it means saying no to a lot of things. For example if I have a flare up or if I feel fatigued or I feel like I need to sleep early I just have to follow through on that.

Ciena on the CBS backlot, 2017

If I have an acting job and I have it on my face or my neck or somewhere where it's visible, I will spot-treat with a steroid cream, but I really try not to. I am not somebody who's against taking medication, but I have avoided that at all costs because in my life it has been more detrimental than it has helped me.

I take care of my mental health. I didn't realize the link between the two and how much my condition was actually affecting my mental health and vice versa. It becomes this cyclical thing. I started therapy which has done so much for my skin. That's definitely a part of my routine now. It's funny and maybe it's just the nature of therapy but now that I'm at the eight month mark it's become all about my skin. I've gone through all of the normal stuff like family, friends, relationships, career - I've talked about all of that - so now I'm at a point where it all comes back to my skin.

It's come full circle where I'm working towards building up a team of people just for my health. I'm going to an allergist, getting a dermatologist cause I haven't been to a dermatologist in three years. I want to look into breathing work. I want to build up a team of people and try things that I haven't tried before. There's so many alternative measures out there that people have recommended to me so now I’m trying to implement new ideas and take advice from all different kinds of people.

Los Angeles, 2020

Bodewell: Knowing what you know now, what advice would you give to your past self? The Ciena in college who was struggling with all these unknown things.

Ciena Rae Nelson: I would tell her to allow herself more time to be still, because I think for a long time I felt like I had to just keep running and I would just run myself into the ground. I wasn’t listening to my body which did and does me no good. I realize now that I think I was trying to outrun myself. I was trying to outrun this thing that was constantly pulling me backwards and in turn that landed me in the ER - it landed me at the rock bottom of my health.

So I think just allow yourself some time, accept what you're going through, let yourself heal and listen to what it is that you need

For more, follow Ciena on Instagram