100: How to Thrive Living With Psoriasis w/ Reena (aka Psoriasis_Thoughts)

Psoriasis often causes feelings of shame and embarrassment, of wanting to hide. My guest today is here to share about her journey with psoriasis: the ups and downs. 

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My guest today is Reena (aka Psoriaris_Thoughts). I found Reena on Instagram where she bravely shares her personal journey living with psoriasis. She's not just inspiring… she's also kind and real.

Joining us from Canada, Reena is very candid about the ups and downs as well as what has helped her find peace living in her skin.

Honestly, her approach to life can resonate with anyone living with pretty much any type of skin rashes.

Join us as we discuss how your state of mind and how you see yourself — either as a victim or hero of your story — can impact the quality of your life.

Have mindfulness and lifestyle changes helped your psoriasis? Let me know in the comments!

In this episode:

• Reena's story of living with psoriasis
• How Reena treated her psoriasis when she was in high school
• Insight for people who are struggling with how they view their bodies because of their chronic skin condition

Quotes

“I've written a lot of poetry about that. My body's my enemy, my body's other, my body is something that's betrayed me, that doesn't love me back.” [7:39]

“So your heart, your body, your mind. It's like this trio of buddies. And we can take care of each part of ourselves and really start to feel great. So when I started giving my body what it needed, I find that my skin is much easier to live with.” [10:04]

Links

Find Reena on Instagram

100: How to Thrive Living With Psoriasis w/ Reena (aka Psoriasis_Thoughts) FULL TRANSCRIPT

Jennifer: Hey everyone, welcome back. Today, I am thrilled, beyond thrilled to introduce my guest. Actually discovered her account on Instagram and I just fell in love with everything that she shared there because as you know, living with skin conditions is really, really tricky. It can be frustrating. It can make you feel really alone. And when you hear somebody else's story, and you see the things that they do in their life to live their best life despite, or maybe in spite of having these rashes, whatever it is, psoriasis or eczema, it can give you that sense of hope that you don't have to just get stuck at home all the time hiding. And so I wanted to introduce you all to Reena. She has her account as Psoriasis Thoughts. And I'm going to make sure to put her Instagram handle beneath this video, so you guys can go, not only just follow her, but also send her messages and connect with her as well because she shares great information. But Reena, I just want to thank you so much for being here.

Reena: Thanks Jen. And hello to everyone who's listening, or watching.

Jennifer: I know, I'm excited. So why don't you tell us, you have struggled with psoriasis. When did that start for you?

Reena: So psoriasis started, I guess it's never the right time, but for me it felt like it was the worst time. It was the summer right before I started high school.

Jennifer: Oh, no.

Reena: It started as these little dots on my stomach, just very, very small. And they were itchy. And I went to the doctor a few kind of weeks and because it wasn't going away. And he said, “Oh, it's just chicken pox. It's just chicken pox.” And I thought, “Okay, amazing.” I'm like, “This is going to go away, right? This is going to go away.” That's all I remember myself saying.

Jennifer: Oh, no.

Reena: And he said, “Of course, of course.” And then I went back a week later because they were getting bigger, and itchier, and of course they start to flake. And he said, “Oh Reena, you have psoriasis.” So of course I thought it was spelled with an S, right? Sounds like a dinosaur a little bit. And I went to the dermatologist, yeah. And then they diagnosed me. And kind of give you a few creams. I think there were some other student doctors, right? So they're kind of all looking at you like you're this specimen, and you're kind of like, What is going on, I need this to go away. Right? High school's about to start. Dresses, and shorts, and boys, and new friends, and all the things you want to do. And I think at that point, for me it was like, I felt like it all ended, for sure. And in many ways it did.

Jennifer: Oh, man. And did the creams and everything, did they help, or did you just feel like it got worse and worse? And then what was the experience like of going to high school, and having psoriasis, which I actually in high school, I don't remember anybody having psoriasis. So I can imagine that that does make you feel quite different.

Reena: Totally. I used… Yeah, totally. You know what? And I think a lot of people wouldn't know if you had it or not because it's a condition that you hide, right? No one ever says they have it. There's a lot of shame and embarrassment. So I'm sure people had it, but we would never show it. Because I never met anyone in high school, but nobody ever knew I had it either. Even though I was at that point, it must've been at least 50% if not more covered with psoriasis. Right? So 50% of my body. It was a lot. So, yes. I was using creams [inaudible 00:03:43] UV light, as well as, crude cold tar. And crude cold tar has a really strong smell. I'd say it's kind of like mothballs and tar, right?

Jennifer: Not how you want to smell in high school.

Reena: Not how you want to smell in high school. And it was like this greeny, black, gooey stuff, you'd put on. And you'd put on saran wrap and then your pajamas. And it would stain the sheets. And in the morning I'd wake up and I wipe it off with these warm water and towels, which would get stained. And then I'd put on like goopy creams, and you'd just hope to get through the day without leaving a trail of flakes everywhere you went right? Because you take off your clothes after, and it's like a snow storm. So, they did work. I'd say the creams worked on and off. I'd go and get UV light, I'd go for holidays. So I'd find things… And then I took pills, different pills like methotrexate, and things like that. And again, they worked and they manage the condition. But it always came back. Or it showed up in different places.

Reena: And when it got really difficult for me, so I got it when I was 14. I'd say about the age of 23, 24 I started getting it on my hands and my feet. And that's when it started getting really difficult to manage, and I couldn't hide it anymore. Right? And that's when I'd say, it really started to cause a problem for me. Kind of in the way that I lived, and the way that I felt about myself. I always was anxious about it, but when it started to show there was no hiding it, that's when I definitely, like it got pretty dark for me.

Jennifer: Yeah. And with that said, I'm actually kind of curious about your experience. You have tried all of these things, and now it just keeps coming back.

Reena: Yes.

Jennifer: I'm sure at some point you're just like, what the heck?

Reena: What is going on?

Jennifer: What is going on? Have you ever-

Reena: Yes.

Jennifer: Gone through that in your mind? How has that affected you?

Reena: Yeah. So, no. I'm going to say I lived a lot through the external validation perspective for most of my, again, for most of the time I had it. I was much more concerned with what was going on, and how people were perceiving me, and how I can hide it, and how I look. So I would take anything. I would do anything that would give me a quick fix. If I went to a doctor, an ayurvedic doctor, or a naturopath, or… I went to everything, homeopath, a Reiki master, at the… You know, so young and I'm at the Reiki master. And I didn't have the want or the desire, or the commitment, right? I was like, I don't want to eat this. I want to have fun. I feel like I'm depriving myself, right? I'm depriving myself of things.

Reena: And so I just want the quick fix. But I never asked what was going on, until I couldn't move anymore. Right? Until it really started getting bad on my hands. It was cracking. And that took me to meditation. It took me into 10 day silent retreats. I kind of went into a place where I was like, I need to hear what's going on in my head, what's going on? So I started doing 10 day silent retreats. I started doing more yoga, and then practicing mindfulness meditation, which really helped open up my awareness in how I was thinking, processing the world, how everything that happened in my life, I was reacting to as a stressor. And so I ended up asking more questions when I became more mindful. But I'd say that was, 2013.

Jennifer: Wow.

Reena: Just six years ago. So 19 of the years I spent. I still go back and forth, but I worried about external validation. So yeah, I never asked what was going on because I didn't even care. My body was my enemy. I've written a lot of poetry about that. My body's my enemy, my body's other, my body is something that's betrayed me, that doesn't love me back. It's screaming at me and I don't want it. I want it to go over there. I just want it to clear up, and stop giving me so many problems. So, I never considered it part of me.

Jennifer: With that said, that's a really very specific way to look at things.

Reena: Yes.

Jennifer: But it sounds like you've crossed a line where you're able to look at that perspective and that relationship from a much different place. So if your body isn't your enemy, and it hasn't betrayed you? Then for people who are wondering, like maybe that's where I am right now. How else could I look at this? Do you have any insights that you could share about what you've discovered?

Reena: Yes. How lovely. What a great question. Thank you for asking that. I spent most of my life in that space, right? My body's my enemy. And then I thought, it's very hard to go from, I hate my body to, I love my body. I hate myself, to I love myself. So with mindfulness, we approach it with curiosity, acceptance, non striving. So you're in this place of being neutral. It doesn't have to be bad. It doesn't have to be good. Maybe I can ask myself, Tony Robbins would say, ask yourself better questions. The quality of your life depends on the questions you ask yourself right? And so I say to myself, Okay, let's say, I don't want to hate my body, right? Let's say the skin condition is not my body being angry at me or attacking me.

Reena: What if it's trying to talk to me? What is my skin saying? When my body hurts, if it's itchy, what is it saying to me? How could I interpret this differently? What does it need? Sometimes my body needs sleep, sometimes it needs water, sometimes it needs a good sweat. Sometimes it needs some dancing. And other times it needs me to breathe really deeply and get on the yoga mat, and really calm down. That only came from listening to my body deeply, right? Instead of hating it, I'd say I'm itchy today. My skin is much flakier than it normally is. What do I need? And so asking myself those questions, giving my body what it needs, not allowing my mind to always say, Oh, no. I don't want to get up off the couch I'm tired. Some days it really is, I need to move my body.

Reena: I need to move this stress around. And my body responds by either calming down, it's not as flaky. It ends up being this partnership, right? So your heart, your body, your mind. It's like this trio of buddies. And we can take care of each part of ourselves and really start to feel great. So when I started giving my body what it needed, I find that my skin is much easier to live with. I'm not doing anything super special. I do live well and healthy, but that's because I want to feel great. So it's easy. There's no sacrifice. And my body's my friend now. And it's been years, it's been about six years, but it feels so much easier and so much better.

Jennifer: Yeah. And actually let's talk about that for a moment.

Reena: Sure.

Jennifer: You were saying, and I saw you talk about this on your stories about how you're like, I just want it now, but I know that it's not going to happen now. Like I want to eat the apple you were saying. And I want to feel better now. So for someone who is going through this, and I agree with you, having worked with clients who have psoriasis, it's a journey. It is.

Reena: Yes.

Jennifer: And it's not necessarily a straight line either. It's one that looks pretty loopty, loop. And sometimes you take five steps forward, you take three steps back.

Reena: Yes.

Jennifer: And it just says what it is.

Reena: Yes.

Jennifer: What if someone's in that mindset of, I want it all now. Do you have any thoughts, or advice that you could share from your perspective and experience? Of why there's a better way to possibly approach that, or a different way to look at it?

Reena: Yeah. I definitely, am one of the people that, or was one of the people who wanted it tomorrow. So if I'd go to a naturopath, or even a doctor, a holistic practitioner, I'd say, I would be like, Oh my God, this takes so long. They're like, Okay, wait. You'll see results in a few months and you're like, What? I'm eating paper. How can I do this? I can't do it. I would get really, really frustrated. So I would say, it's not about what we take out, it's about what we put in. That would be my first kind of step for myself as I was trying to make it a little bit easier. So for me it was like this week, all I'm going to do is, I'm going to drink two litres of water. If water is really good for you because it helps you, like your skin feels supple, it gives you more energy.

Reena: It's really good for the brain, right? Why don't I just add two litres of water this week? Oh my God, I feel so great. Okay. So the next week I'm going to have two litres of water, and now I'm going to walk 10,000 steps, three times a week. So I'm adding these small things in, and then I'm asking myself, how do I feel different? Does this feel better? What feels good for me? When do I not feel good? And then it just became easier. It's kind of these small, small steps and it makes it so much easier. So I would say, yes, you want everything tomorrow, but you don't appreciate it that way. It's not fun to get something so easy, you know? I remember in high school, right? I would maybe plagiarize a paper.

Jennifer: I won't tell your teacher.

Reena: We've all… Right? Yeah, I know it's so terrible. But I remember kind of getting things really easy and not valuing them. And then the nights. Or the weeks, months I spent working on a project, and actually creating something on my own and how great it felt to build something. Sometimes it really is, about what we learn on the journey, versus the destination of the clear skin. If I didn't have all of these ups and downs, I wouldn't be able to have this mental resilience. I wouldn't be able to start again when I fall. I wouldn't be strong in all the other aspects of my life. So yes, it's difficult, but the reward is the process itself. Who can you be? Who could you be? What could you achieve? You could really learn something about yourself through this process, which is going to go so much deeper than the skin.

Jennifer: Yeah. You still experience flares now? Yeah.

Reena: I do. Yeah. Yeah.

Jennifer: With that said, do you feel like… Because I think that's important for people to know. Like you're not 100% perfect, clear.

Reena: No.

Jennifer: You're still in your journey. Still, have… I think all of our journeys are still happening regardless of where we are. But if you didn't have that mentality, the way you look at things. I find a lot of times people at that next flare, they're like, Forget it. I'm throwing in the towel. I'm done. I can't do this. And so isn't it interesting? Have you found that now when that happens, like say a flare does pop up, you're not like it's the end of the world.

Reena: Yes, yes, absolutely. Especially when it starts getting worse. It's like watching a really slow creep. Everyday your like, Oh my gosh, it's not getting better. I'm doing all the right things and it's not getting better. I know for me why it happened, and now that I'm aware I can make changes quicker. I know what to do for myself. So yeah, sometimes the skin is going to get flared. Sometimes life's not going to go as planned, but I know how to take care of myself. I know that a proper… Like a lot of sleep, taking the right vitamins and supplements, eating in a certain way, going to the gym, managing my stress. I know these are a number of things, but I know what I need to do to bring myself back. Again, I would say that's why the journey of the healing and the patience is so important. Because you are going to fall down, change is going to happen, the skin is going to react.

Reena: Sometimes the things that are beyond our control. Maybe it's something outside, maybe there's a lot of construction, and you're really sensitive to all the stuff that's flying around. We never know. So it's kind of like if we build that mental resilience through the journey, then we're able to apply it, when we fall down again. And yes, I experience flares, I still get stressed out. I still do eat things I'm not supposed to sometimes. Because I try the best that I can-

Jennifer: And you're human.

Reena: Oh, I'm so human. I've never been able to do it perfect. I work to percentages. People will say, well how much do I have to do? Even with meditation, I can't sit for 30 minutes a day and I'm like, one minute's better than no minute.

Jennifer: True.

Reena: Right?

Jennifer: Very true.

Reena: So add something in, and then give yourself credit. Because the next day, you're going to do something better for yourself. You're going to want to keep showing up for yourself when you encourage yourself. So sometimes I'm going to fall down, but I sure I'm going to pick myself up too. I deserve it. Why not? Right? The healing, the journey itself, is where I keep learning. And I'm so grateful for that.

Jennifer: Yeah. And I think too, one of the things that you shared with me before we started talking, which I think is a beautiful lesson as well, is that when you were going through this before, and you said, I was very afraid. I was hiding things. And I… You start to feel very alone and yet almost coming out with this experience, I have psoriasis, this is my life experience, has completely changed your life in many very positive ways because you don't have that shame-

Reena: That's right.

Jennifer: That you're living with. Do you want to talk a little bit about what that's like, having… I mean you very publicly share your experience living with psoriasis-

Reena: Yes.

Jennifer: Which is incredible.

Reena: Thank you.

Jennifer: But for people that… It's been my experience, even I was sharing, trying to get people to even talk about their experience with psoriasis has been a challenge. Because a lot of people feel uncomfortable sharing.

Reena: Yes.

Jennifer: So how has sharing actually helped you?

Reena: Yeah. It's changed my life completely and always. It's changed the relationship I have with myself, with the people in my life, and I've been able to build and work. Make friends with people all over the world who lives similar to me. It's changed my life completely. It's taken away the shame that comes with it. And if anything, I felt like I was kind of thrust into this advocacy role without really wanting it in the first place, which is exciting. And it's opened me up in a new way. So as I said, like you talked about, I was one of those people who'd never talk about my experience. And so I got to this place, it must've been the end of the year 2015, and I flared up, I was at my desk and I think I was gripping my mouse and I started to kind of sweat and have a panic attack because I couldn't hold my mouse.

Reena: My hands had been broken, like torn up. I was in plastic gloves, I was a mess right? Wrapped up from like, Oh my gosh, full of saran wrap on my feet. And I was like, I can't do this anymore. I can't do this. And so I was bedridden, and I remember being like, I need to talk to somebody. I am so alone. Who am I going to talk to? And so I started doing a diary. And then I started posting online because I loved Instagram, and not just about how I felt about my skin. Well, anyone ever loved me like this or quotes about how I wanted to feel. And then people started responding. And then I remember a couple months in, I posted my picture and I never told any of my friends that I started this. I was very candid. I was like, I don't want this to be just about positivity.

Reena: I want this to be about the ups and the downs. What I'm really thinking, what I'm really feeling, even if it sounds shallow, even if it sounds like I'm so worried about how I look or maybe what people would think, I was like, I just want to post it. And I remember the first day that I posted, I think it was a picture of my hand and I was like… And I must've posted a picture of myself and all these people were commenting and liking it and saying, Oh my God, you're so brave. It's so cool you did that. And I'm like, Oh my God. Oh my God. I've come out of my skin closet. I'm freaking out, I can't believe I just did that. Some of my friends started to find it. And then I started to post more and more.

Reena: I did it before I was ready. I started to talk to people about how I was actually feeling. And then somebody said, I feel that way too. Do you know when this happens? Or if someone touches you, how good it feels to be touched? Oh my gosh, I'm going to a wedding next week. I'm so worried. I don't know what to wear. I was like, I thought I was the only one living with that. And so psoriasis was this condition that isolated me, but now it connects me, right? It connects me. And with some of my friends, and my family who started to find my page, they said to me, I never knew you felt this way. I never knew you felt this way. And I said either did I. Through sharing online, I came to terms with how I was feeling.

Reena: I didn't feel so alone. I met other people who supported me and loved me through it. And so now, as I'm online, I want to help other people feel that way too. Although I'm not always comfortable sharing, and I didn't want to grow a page to this, to have this much exposure, it wasn't my goal. My goal was to just get support for myself because I was struggling. But now it's given me purpose. It's given me meaning, it's given me direction. I want to be there for girls and for boys, for women, for men, for people who feel alone, like how I felt, right? However they choose to move forward in their journey. I always say whether they choose to have medication, whether they want to do a whole bunch of everything, whether they want to go completely natural, whether they want to hide their skin, whether they want to show their skin. Wherever they are, I want to meet them there.

Reena: And I want to tell them it's okay and you're not alone. I think what I learned through this is, I really, if I had a choice, and someone said to me, if you could take not having psoriasis away? If you could take your psoriasis away and never have had it, would you do it? Absolutely not. It changed me for the better. This journey, is one that's changed me for the better. And I know what's important in life, because I've lived with this. I know how to treat people. I see people suffering and I feel for them because I know what it's like to suffer. I can look at myself in the mirror now and say to myself, I'm proud of you.

Reena: You're strong. Despite this, you still stand up, you still get up. You still… Now I dress myself up. I wear a lot of jewelry, I wear color. I only used to wear black and long sleeves before. I wouldn't wear any makeup. I wouldn't show up. And now I'm just out there because I want to show people you can feel good, you can live well and you deserve it. Right? And people will be there for you. People are not… Maybe they're looking at us, but they don't… Most of the time people are just curious. And even if they're not, that's okay, that's okay. We have to love ourselves through that, and that's a journey. And I will have to do it every day, remind myself every day. So a long answer, but definitely something that's really helped me through this.

Jennifer: I want to give you a round of applause. I was like, yes, yes, keep going, keep going.

Reena: Thank you, thank you.

Jennifer: Because it's so important that people know that they're not alone. Whatever you have, it's so isolating. And I think… I'll be honest with you, anybody watching this and listening to this, no matter what type of skin condition you have, this is universally applicable. I just think it is. And I think what you're sharing is so beautiful and as I said-

Reena: Thank you.

Jennifer: I really appreciate you being here and sharing your thoughts, because you're living through this. And you're living, I almost feel like it's not even despite of it, it's helping you to thrive in a way that, like you said, you might not be thriving, had you knock on through all of these things and seeing it as that gift and as that blessing. It's hard for some people to get there, but when you can get there, amazing things can happen. When you see the suffering that you've gone through as a gift and an opportunity.

Reena: Yes. And some days you look at it and you say, this sucks. And those days are okay too.

Jennifer: Yep.

Reena: Right? Some days [inaudible 00:24:09] some days I'm like, I hate this. I'm so uncomfortable. I'm back in my saran wrapped feet. Or I'm having a really hard day and everything is flaky and it hurts and I don't want to do this. And those days I take care of myself a little more. Those days I say to myself, I see you girl. I know it's a hard day. What do you need today? How can I be there for you today? It's about the ups and the downs, right? And it's being there for yourself regardless. It's having your own back. And then it's also, for me, it's about getting online and sharing that and connecting with others so they can support me too. Right? To ask for the help that I need, to ask my friends when I need help.

Reena: There's a lot of self care, but sometimes we also need community care. We don't have to do this alone. We don't have to be so strong and on our own all the time. We can ask for the help we need. And it's been the support of others that has really brought me to this place. And that's what drives me every day, right? I couldn't have done it alone. And so, it's having my own back, and then also being there for others as well.

Jennifer: Well, I just want to thank you so much.

Reena: Thank you Jen. Thank you.

Jennifer: For showing up, and doing the things that you do, and I want to make sure that everyone, if you're on Instagram can connect with you. So it's @psoriasis_thoughts, but don't worry, I will make sure to put an easy access link, so everyone, if they're not sure how to find the underscore, they can easily find you. It's a great account to follow and I really-

Reena: Thanks.

Jennifer: I love learning from you and everything that you're going through. And so thank you so much for joining us. I really appreciate it.

Reena: Thanks Jen. Thanks so much and look forward to connecting with everyone. Thanks for listening and allowing me to share my story.