BEYOND DIAGNOSIS w/Nicole Pedra

Nicole Pedra defies the limitations of multiple sclerosis (MS) while embracing an array of roles, from coach to model and actress. Despite her diagnosis at the tender age of 10, Nicole navigates the challenges of her condition with resilience and grace, offering insights into how she continues to pursue her passions in the entertainment industry. Through her experiences living with MS for 26 years, Nicole's journey unfolds as a testament to strength, resilience, and the unwavering determination to thrive despite the obstacles presented by chronic illness.

​ALLIÉ: Let's start our conversation by talking about hats. As someone who wears multiple hats, a coach in addition to being a model and actress, how do you navigate the challenges of MS while pursuing your passions in the entertainment industry?

NICOLE: Basically, the industry is so up and down all the time. They say that if you're an actor, you're also asked, "Which restaurant do you bartend or waitress at?" So I've been in the acting role for a while now. When I audition, that's fine, or when I get something, but it's not always consistent, which can be overwhelming. If it were more regular at this point, then I would have to cut back and add other things. But it's nice because I've had the time to branch out, do other things, and go where opportunities take me.

So the real way I manage all my obligations and wearing so many hats is by being aware of what the next day entails. If I have a shoot that's going to be a six-hour day, I prepare myself accordingly. That might mean sleeping well, maybe skipping a workout if the shoot will be strenuous, like if it's on rocks or involves being in a bathing suit. I make sure I've taken my medication, gotten plenty of sleep, and I show up as my best self.

ALLIÉ: Yeah, I hear you. So it's all about preparation, right? Being proactive rather than reactive, I suppose.

NICOLE: Exactly. The amazing thing is, I'm sure everyone can relate to when you have something to do, somehow magically, you summon up the energy to do it. You just get it done. People get very surprised because I am high energy. When I'm doing something, I'm fully present, positive, and energetic. You wouldn't assume that because I have a chronic illness, but I can bring that to everything. Then I have to recharge later.

ALLIÉ: It's 'spoon allocation', right?

NICOLE: Exactly. Even when you're depleted, if you have something to do, somehow you're able to muster that extra energy to get through it. But no one sees afterwards when you're like, "I'm going to be dead in my bed for four days." Maybe just doing a little work on my computer. I manage it that way. When I'm really tired and not going to get the work done that I want to, that's when I spend time on emails, talking to my partnerships, and addressing everything that needs attention.

​ALLIÉ: Multiple sclerosis can manifest at any age, but let's delve into this. It's most commonly diagnosed between the ages of 20 and 40. However, Nicole, you received your MS diagnosis at the age of 10. So, my question is, diagnosed at such a young age, could you take us back to that time? What was the most challenging aspect as a child?

NICOLE: The interesting thing I often discuss is that most people have had symptoms before diagnosis. They experience these strange symptoms for a while. For me, it was a significant onset. Basically, I got the flu during spring break, and it was severe, with constant vomiting. They had me on frozen Pedialyte popsicles to nourish my body. However, after a few days, it progressed into strange neurological issues. I kept returning to the pediatrician, and suddenly I experienced double vision, making it difficult to watch TV. Then I couldn't feed myself, followed by difficulty walking due to what I called a "jelly leg”, where it lacked control. The pediatrician realized this was beyond a normal flu and sent me to the hospital. Initially, they suspected a stroke or brain tumor because I also had Bell's palsy, causing numbness on one side of my face. Additionally, I experienced transverse paralysis, rendering the right side of my body and leg paralyzed. It was evident that something serious was happening. I responded well to steroids, allowing me to regain mobility and vision. However, I relapsed after two months, leading to hospitalization again. These severe flare-ups facilitated a quicker diagnosis. It's intriguing how different my disease's onset was compared to others.

​ALLIÉ: To your point, typically, symptoms appear gradually, and it's only after diagnosis that you connect the dots. Each journey comprises a series of moments. I wonder if you could share a specific moment in your MS journey that altered your perspective on life and ultimately shaped who you are today. Was there such a moment?

​NICOLE: Yes, it was my lowest point. I refused to accept my diagnosis and didn't acknowledge any issues I faced. This led me to become controlling and almost manipulative, navigating situations to fit my narrative. Then someone made a remark that hit home, and I read a book that resonated deeply. It dawned on me that I was living in denial, pretending not to be sick, concealing a significant part of myself. I realized my true strength lay in accepting my MS as part of me. Hiding it was dishonest and prevented me from being my authentic self. During COVID, witnessing the Black Lives Matter movement and the need for representation, I realized the importance of visibility. As a child with MS, I lacked role models. But as an adult, I could be that role model for others. It wasn't a sudden realization, but as I matured, I embraced my condition not as a defining factor but as a source of strength.

ALLIÉ: Isn't it remarkable when you find strength within what others perceive as weakness? People often say their disability is their superpower. Until you walk that path, it's challenging to grasp.

NICOLE: Until you decide to embrace it, you don't realize its power. You possess that superpower, but if you’re not embracing it, you’re not being the superhero you are.

ALLIÉ: It's like stepping around your power instead of into it. When you step into it, your rock it like you're doing now. Your work, stories, and presence support many in the community.

NICOLE: You know, the crazy thing is, as much as I'm giving support to people, this has been the most rewarding thing for me. Like, like I said, I never knew anybody. I've never talked to people about my illness. Like I never, you know, I didn't talk to my friends' moms who had MS. Like I was in high school and elementary school. I wasn't going to be like, "Hey, are you dealing with this?” They weren't my peers, right? So, having people relate to me has been like overwhelming for me. As much as I know it's helping other people, it's been so amazing on my end.

ALLIÉ: Let's get to brass tacks here. With MS, just like with life, there are good days and bad days. In your 26 years of living with MS, let's talk about the bad days. How do you maintain? I guess I asked this question specifically for those who have been newly diagnosed, who don't have the experience that you have. What advice do you have for managing the bad days?

NICOLE: Embrace the bad days. We just have to accept that we're gonna have bad days. I had a bad day yesterday, and bad days this week. And if we stay in a space where we're like, "Why am I having this bad day? I can't be having this, you're not doing anything…” Then we're just making it worse, right? We have to be like, "Okay, this is my bad day. I'm having a bad day. Let me accept it. If I need to rest, let me rest. If I feel guilty, I'm not getting stuff done," answer one email, do it while resting. Like, as long as you don't let your bad day ruin your spirit and your entire mentality, that's what's important, right? Accept that it's a bad day. Take the rest that you need. Don't feel bad. You are going to have bad days. Period. You can't avoid them. They're going to happen. So when you have a bad day, you're having a bad day, that's okay. Do what you need to so you don't have a bad day tomorrow. You know what, I still struggle. My husband's always like, "It's okay." Like yesterday, I was really depleted because I did a lot of way too much stuff consecutively. I had like three very jam-packed days. And he was just like, "Just take a rest day. Put on a movie, answer some emails, you know, just rest. It's okay." And I know it's hard to accept that when you first been diagnosed because you're used to doing so much. You're like, "I did this, why can't I do this?" And then you guilt yourself about it. But the reality is the sooner you can accept that this is how it's going to be and that you will have these bad days, the less they'll affect your life.

​ALLIÉ: So, it's an internal struggle where you just have to manage expectations. And it's crazy, because it's so easy to give other people grace, but to give ourselves grace… that's a whole different story. It’s much more difficult.

NICOLE: I tell people to think about how you would talk to a friend. Seriously, think about what you would say to a friend. And also, having a tool… a toolkit, What can you get done on bad days, right? It’s knowing these are the things that I can do on bad days that will make me feel better if I actually do something. Maybe on bad days you do laundry. Right? It's like, “Oh, okay, at least I'm getting laundry done.” It’s just having things that you can do that will make you feel better within your limits.

ALLIÉ: That’s such great advice. Schedule your wins for the bad days. These are the wins that I can gain, right?

​NICOLE: Because you still feel good when you accomplish one thing, right? So, what can I do that's going to make me feel better when I can do absolutely nothing?

ALLIÉ: I want to talk about a few more letters today because in addition to MS, you balance additional diagnoses. We're talking ADHD and PTSD. At this intersection, how do you maintain self-care while also managing life with your busy schedule?

NICOLE: It's like, is there really an answer to this? So I actually, I get very overstimulated and overwhelmed. So a lot of times I take 30-minute breaks. So I like to go into like a room by myself, maybe put my noise-canceling headphones on and read. I'll do that in the morning. Like just finding ways to ease into things more easily and learn, know yourself, right? Like I have ADHD and like my brain can be in a million places at once. My noise-canceling headphones actually really help with that, right? Sometimes when I'm learning lines, I do it standing up while pacing because my body's anxious. There's just certain tools that I've learned to incorporate, to manage all these different things. The PTSD, that's therapy helps. But I have a lot of issues sleeping because when I first, my onset of my disease which was obviously very frightening, my parents were out of the country. So I was in the hospital for the first time when my parents weren't there. So it was very scary. And afterwards I also had a spinal tap that went very badly in the emergency room. They didn't have any positioned correctly. So they had the needle in and they couldn't get any of the fluid out. And so like my mom was on top of me screaming, I was screaming, she had to lay on me physically because I was screaming so bad. And a doctor came in and was like, put a pillow between her legs, put a pillow between her legs. That was all very traumatizing. And I would wake up screaming at night because I would be scared that my parents weren't gonna be there, and I'd be sick. So sleeping has always been an issue for me. Once again, just calming down, reading at night, putting the phone away, things like that. Like understanding that my phone can make me anxious. So if I'm feeling anxious, let's not have the phone. In regardsto self-care, everyone's different. Some really like breathing techniques, but that doesn't necessarily work for me. Some people do better in sunlight. I like to lock myself in a dark room. Being in a space that's enclosed makes me feel like I have more control…. It’s hard with a disease that you don't have any control of.

ALLIÉ: For sure. Well, I love how you're saying it's just knowing yourself. And once you know yourself, you can then get to know the tools that work best for you.

NICOLE: And a lot of times people spend so much time fighting stuff instead of being aware of stuff. Let’s say we're looking in the mirror and you're just like thinking that like, oh my God, this shirt looks so gross and stuff. Being aware that you just had that thought, right? Be like, no, this shirt doesn't look gross. Maybe it's not the right color. Let me try something else. Like being aware of what we're thinking is like the first step because then you can like actually tell the truth of what it is. Right? Like if you're not aware of the fact that you're calling yourself lazy and your guilt-tripping yourself, then how are you going to fight that? ∎

Follow Nicole on Instagram: 
@nicolepedra
​Learn more about Nicole as an AwareNow Official Ambassador:
​www.awarenessties.us/nicole-pedra