Nitika Chopra is, in her own words, “a woman on a mission to inspire radical self-love.” Her goal is not only to show us how to fall in love with ourselves, but, like her, to “learn to thrive with a chronic illness.” If she’s one thing: she’s real. Nitika shares the raw pain she had to grow through in order to find that self-love she speaks so passionately about. Diagnosed with debilitating psoriasis at 10, she was further diagnosed with psoriatic arthritis – which at that point had taken over most of her body’s joints – at 19. She lived for years with unsightly sores from head to toe, unable to move without severe pain. She lived through, as she tells us in this episode, more than 15 years of pain, insecurity, confusion, and depression. In that darkness, she made a decision: “to be more committed to [her] happiness than [to her] suffering.” By 2010, she’d mastered the concepts of self-love and self-care and founded lifestyle magazine Bella Life; a few years later, her now-glowing skin came center-stage as she became the host of Naturally Beautiful, a talk show that aired on the holistic lifestyle channel Z Living. Most recently, she became a luxury skincare spokesperson and regular expert on QVC. She’s also the host of her own podcast, The Point of Pain, which explores how we can navigate pain in our lives – both literal and figurative – with grace and heart. This week, she launches perhaps the most heart-centered of her projects to-date: the first annual Chronicon, in partnership with Healthline. For one day in New York City, she and numerous chronic illness advocates and experts will join panels (in an ADA-compliant space!) to talk about life with chronic illness: the good, the bad, and the ugly. She prides herself on being able to truthfully feel the fear – and do it anyway. And do it she does! We are so excited to hold space for this inspirational, real woman – who pulls no punches. Uninvisible Pod crew: meet Nitika! (P.S. We know you’re all wondering – and no, she’s not related to Deepak or Priyanka!)
Key links mentioned in this episode:
Tune in as Nitika reveals…
- that she was 10 when she got her psoriasis diagnosis – following a sterile, cold experience being biopsied
- that she was diagnosed with severe psoriatic arthritis at 19
- that she still struggles with inflammation, which inspires self-love conversations with herself constantly
- that she’s on AIP for her health
- that just because she doesn’t have psoriasis all over her body, doesn’t mean she isn’t managing her symptoms daily
- that she spent a lot of time beating herself up with what she calls “toxic positivity”, or the “pink bubble”, in the wellness space – that she followed the prevailing teaching that there was something misaligned in her perspective, and she had to fix it (and that, in essence, her ailments were her fault)
- that she’s passionate about debunking “toxic positivity”
- that her bones began to deform because of her arthritis
- that she is a very spiritual person, and finally came to the conclusion that maybe God also made medicine to help cure her – not just to hurt her
- her wake-up call to medicine: when she couldn’t make it to an audition, and realized that she wasn’t living a full life
- that not everybody needs to take medication – but it really changed her life
- that no amount of green juice would have saved her – she really required medicine
- that in high school, she’d wake up with bloody sheets from the itching in her sleep
- that her ex-husband made her feel that she could trust herself – that her gut was teaching her the right things, and she needed to listen to it
- that she has truly become her own advocate, even though she’s always considered her mom to be her nurse
- that she’s been creating content for 10+ years now, but her health journey was never what she wanted to lead with
- that she’s always been proud of what she’s overcome and been through – but she didn’t want that journey to define her life
- that in 2016, work began to dry up – and by the end of 2017, she had connected to her larger purpose: and realized it was time to talk about the one thing that moves her in a way that nothing else does – her health journey. As such, the world began opening up to her again
- that when she meets someone who’s struggling with their body in ways that she can relate to, nothing moves her more than being able to help that person
- how TheCurvyCon inspired her
- that Chronicon feels like a place that she’s creating for a LOT of people to finally belong
- how she creates balance in her life – and that she doesn’t manage everything perfectly, but she’s always learning
- how she practices self-love and self-care
- that she’s experienced more adversity as a woman in the medical system than as a woman of color
- that getting divorced was less isolating than being chronically ill
- that she started Chronicon in part to end the shame and isolation associated with chronic illness
- the American Health Council’s projection: that by 2020, 157 million people will have a chronic illness
- that she’s learning so much from attendees and panelists at Chronicon
This episode is also sponsored by Embr Labs, creators of the Embr Wave.
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Lauren: Okay, guys, thank you so much for joining us. I am here today with Nikita Chopra, who is a lifestyle, beauty, and self-love expert, a speaker, coach, and host, survivor of chronic illness, and the founder of Chronicon, which you guys may have been hearing a lot of buzz about. So Nitika, thank you so much for joining us today.
Nitika: Thank you for having me! I’m so excited to be here.
Lauren: It’s such a pleasure having you on. So I’d really like to start from the beginning of your story … and if you could tell us when and how you first realized that you had something going on, health-wise?
Nitika: Sure. Yeah, I was 10 years old, and I had developed some itchiness in my scalp, and then I had had one small spot on my left arm, and I was, like, what is this? I felt like there was something different going on. And so I asked my mom, and my parents had both had eczema, but they had had it really mildly; they could put a little cream on and it would go away. It wasn’t like a big part of their lives. So they thought that that’s what it was going to be. And I just remember going to the dermatologist and they said, “I don’t think it’s eczema. I think this might be something else.” And they mentioned psoriasis, and I had to get a biopsy; and for some reason, I’ll just never forget that. I was 10, and I remember being in what felt like a cold room. It was dark, it was sterile, and it just felt really bad.
Lauren: And super invasive, too, I imagine, because biopsies are no joke, especially when you’re a kid.
Nitika: I know, it was no joke. And it’s not like I had any emotional preparation for it, or anything like that. And then I remember my uncle, who’s a doctor … he has psoriasis, and he said, “I really hope it’s not psoriasis, because her whole life will be … not okay, basically, if she gets it.” I just remember hearing that, and feeling, what the hell? This is crazy. My whole life is going to be ruined? What do you even mean? He was just nervous for me; he was not trying to be a jerk or anything.
Lauren: No, of course. It sounds like he was being caring.
Nitika: Yeah, he was just nervous. And then it came back as psoriasis, and everybody freaked out, including myself. I’m 38 now, so it’s almost 30 years later. And then I also was diagnosed with psoriatic arthritis when I was 19.
Lauren: That’s when psoriasis goes from being no joke to being a really, really big deal!
Nitika: Yeah, and you know, my psoriasis was always really bad. A lot of people who have psoriasis typically have it on their joints; it’ll be on the outside, on their skin or their joints, or their elbows or their knees. Or they’ll have it on their scalp. That’s really hard. I don’t diminish that at all. But I had it from the tip of my foot to the tip of my head; 98% of my body was covered, and it was like that for about 17 years of my life. So it was never an easy diagnosis. I don’t think it ever is for anyone. But my particular case … they call it “severe” or “moderate”; mine was severe. I don’t even remember how it got so bad, but it feels like I had one spot and then all of a sudden, I had it everywhere.
Lauren: And especially having that from such a young age, that must have really influenced the way you saw your body. It’s no wonder you ended up in the self-love space, right? You’ve obviously been able to turn that into a triumph, but it could have been a minefield.
Nitika: Yeah. It was a minefield, you know; that’s a good way of putting it. It definitely was, and it still can be. I find that now that my psoriasis is better and I’m not physically suffering with my psoriasis all the time, I’m struggling with the fact that I get more swollen or I get more inflamed and my body weight changes a lot. And then I’m really going through all of this conversation in my head of, ‘Well, what does that mean? And how am I worthy?’ Even though my body is changing, and society tells us — and even family tells you — you’re supposed to be a certain size. And I’m just like, “Well, I’m eating no food. Because I’m on an autoimmune Paleo diet, and this is the way my body is going to be, so I don’t know what to tell you, but I’m not going to be size 2 anytime soon.” And so that’s been a huge part of my journey, even as people might look at me and say, “Oh, she’s got it all together” or whatever, because I don’t have psoriasis on every inch of my body. But I still have physical struggles like that.
Lauren: So you’re still managing the symptoms, particularly with the psoriatic arthritis, it sounds like.
Nitika: With both the psoriasis and the psoriatic arthritis, I have to take medication, which is something I’m really passionate about talking about, actually. I’ve been in the wellness industry for a long time, and 20 years ago when The Secret came out and all this stuff was happening … manifestation, Marianne Williamson, all the things, I really beat myself up with toxic positivity — every single day, every single second.
I was beating myself up with-self help.
Because a lot of those teachings tell you that there’s something misaligned with your thought process. There’s something out of integrity or out of alignment. And so if you just think positively, you’ll be healed. That’s essentially what they’re saying to you. Which is so damaging and so incomplete, and it is incredibly infuriating, and it’s something that I am really passionate talking about — because I think there are a lot of young people out there, or there are a lot of people who have been diagnosed with something for the first time, and they read that and they feel such shame and such defeat … ‘Oh my God, I thought something so bad that I gave myself MS, or that I gave myself cancer, or that I have psoriasis all over my body.’ It’s just not kind. So I’m really passionate about talking about when I was 25 … I had been doing the self-help, ‘trying to heal myself with my thoughts’ thing, for about five or six years at that point, and I just had a moment where I was like, ‘I’m literally lying in bed. I’m unable to move. My psoriatic arthritis is so bad, my bones are starting to deform.’
I really couldn’t move without severe pain.
It would take me three hours to leave my apartment, to be able to do anything. I couldn’t walk down the stairs; it was hard for me to get dressed. It was really bad. And I was sitting there thinking, ‘Okay, maybe these people have a point. But this isn’t working. This is ridiculous. I’m sitting here putting this much pressure on myself.’ I’m a very spiritual person. And I kind of thought, ‘Maybe God also made medicine for a reason. Who knows, but let me give it a try.’
Lauren: So at this point, you weren’t medicating yourself? You weren’t taking doctors’ prescriptions?
Nitika: I had been on a medication when I was 19. And actually, that triggered the psoriatic arthritis coming out.
Lauren: So no wonder you had a concern about any kind of medication. Like, how could you trust it?
Nitika: Exactly. And then you find this whole world where they’re telling you you don’t need medication, basically. And I was, like, ‘Okay, maybe I did it wrong.’ Because I tried this medication and essentially it made me worse for a period of time. And so it was really confusing. I was 19, 20 years old, my parents were living in Hong Kong at the time, I was in New York … there was just so much going on. And I really didn’t understand. And then when I was 25, I had this moment where … I used to take voice lessons every week … singing has always been a huge part of my passion … and I took a voice lesson with my teacher … she always had such great things to say about my voice and that I should audition for things. And I was, like, ‘You’re crazy. I can barely get to this lesson. How am I supposed to audition for things?’ So one day, she called me and she said, “Listen, I know you’re not feeling well. I know you’re having a hard time, but there is an audition and you have been practicing the song that you need to sing.” She really believed in me, and she was just, like, you need to get up and go to the audition. I hung up the phone with her. I remember it was around 11am, and it was a weekday, and the auditions were open until 1pm or something. And I thought to myself, ‘Even if I wanted to go, there’s no freaking way I would be able to get there.’ And that was a defining moment for me. I was 25, I had gotten married and gotten divorced … that’s a whole other podcast … and I thought, ‘I am not living my life. This is not living.’ So I ended up calling my parents in Hong Kong, and I said, “I know we tried medication before, but I think I have to try harder. I have to try to find the right medication for my body. I have to do more research.” I had kind of just taken whatever my parents and the doctors had told me I was supposed to take, because I was still pretty young, you know? So taking that [new] medication changed my life. I was literally skipping down the street. It was life-changing.
Lauren: And it was a different one from what you were on that triggered the arthritis?
Nitika: It was a completely different one. It’s actually one that I’m on today. And you know, it’s 13 years later, and I’ve had ups and downs with it. It hasn’t been perfect, but it has given me my life back. It actually has just given me my life. I didn’t even have the life that I have now, anywhere close to what I have now. And the other part that I think is really important is, I don’t think everybody needs to take medication. I think if you can go through a process and heal your gut, and work with an integrative doctor and do acupuncture and take herbs, and do whatever you can … and that really makes you feel better, great. But there’s a large part of the population, and I was included in this … my body was going through so much trauma. I was taking herbs, I was doing acupuncture, I was trying to eat better. And none of it made a difference. The amount of inflammation that was in my body, the amount of toxicity happening in my system … no amount of green juice was going towel that. So I needed the medication. I was on another medication with this one for a while, and I actually got off that second one last December, which I’m so proud of. But it took time. It took months of me working with my acupuncturist. It took renegotiating my diet with my integrative doctor; it took more tests and different supplements.
Sometimes I was doing really well … and then I wasn’t again.
Lauren: It’s a really steep learning curve when you’re changing your body. You mentioned that you also spoke to your parents when you were in your mid-20s, when you were going through these sort of … crises of faith in the medical industry, and in yourself. And it sounds like they were working as your advocates, But did you find that, aside from them, you had to rely on anyone else as an advocate? And has it changed those relationships at all?
Nitika: It’s interesting. I don’t know if I would say that they were my advocates, because they were learning so much at the same time. This was before Google and before everything was at our fingertips. So they were desperate, really. And I don’t blame them. They were just like, ‘What the hell is going on with our daughter, and how do we help her?’ So I wouldn’t necessarily call them advocates, because I feel like they didn’t know what they were doing either. They were just kind of scrambling, and calling people and flying me around the world and trying to have me see healers and go places, and all of that.
Lauren: It sounds like they were more of a sounding board for you.
Nitika: Yeah! I always say my mom was my nurse my whole life. I feel for her that she had to have that role, but it’s true.
I would wake up — in high school, especially — and almost every morning my sheets would be so bloody because I would scratch myself so hard in the middle of the night from itching so badly.
And there are things like that, that people don’t understand about skin conditions — especially one like psoriasis. It flakes aggressively, it can bleed; it’s just like chicken pox. It can be really traumatizing. So I would say my parents were more like nurse practitioners, especially my mom. My dad was kind of just like, “Okay, whatever you guys say!” And then I would say … I’ve definitely had to become my own patient advocate. And I did when I was married. My former husband was very supportive. Part of how we started dating was because my parents were not living here in this country, and I needed someone to help me. I don’t know what I’m doing. And so he was a great sounding board, and he was someone who definitely made me feel like I could trust myself.
I think he was one of the first people in my life — even more than my parents, because they were just trying to protect me … he was one of the first people that let me know that what I was feeling in my gut and my intuition, and where I was … kind of … thinking I needed to go, and things like that … that it was actually something I needed to listen to.
And so he really encouraged that for me.
Lauren: That’s really lovely. So it sounds like even though you’re divorced now, things were good at points.
Lauren: And it’s so important that you’ve become your own advocate, because this has also turned into advocacy on a larger scale for you in so many ways. But probably most notably with Chronicon coming up. Why don’t you tell us a little bit about that?
Nitika: Sure. I’ve been creating content and doing stuff, in TV and writing and blogging and social media and podcasting, and all that stuff, for 10 years now.
Lauren: Yeah, you have a wonderful podcast called The Point of Pain.
Nitika: Thank you, yeah. It’s such a labor of love, these podcasts. I’m sure you would agree! They have such a soft place in my heart. I just feel like they’re so special. So I have been doing that for 10 years now. But for some reason, my health journey was never what I wanted to lead with. I think a lot of people who have stuff going on with their body can relate to this …
I spent a lot of time, especially because I got sick at such a young age, thinking that I was just a sick person. That that was my entire identity.
And so even if you didn’t see my psoriasis, you knew I was sick just by meeting me. Because that was what I knew about myself. And it was very real to me. Everything was real.
Lauren: Of course it was real. Let’s not deny its existence. It was definitely real!
Nitika: Exactly. It was definitely very real for me. Everything I ate, every piece of clothing I wore, every person I hung out with, every move I made was, like, ‘Oh, because I’m sick … XYZ, whatever.’
So when I got healthier, and I was able to function in a way that wasn’t dictated fully by my chronic conditions, I started to be, like, ‘Who am I without my illness?’
‘How do I love myself without getting the attention only from negative things? How do I really embrace … what’s my favorite color? What songs do I like to sing? Who do I like to hang out with?’ All these basic things that I really hadn’t thought about before. So then when I started creating all this content and doing all this stuff … I’m not ashamed of it …that’s not the experience I’m having, absolutely not. I’m very proud of what I had overcome and been through. But I didn’t want my life to be about that. I didn’t want people to be, like, ‘Oh, this poor Psoriasis Girl, or something. So I really didn’t want to talk about it for a really long time. It was hidden on my ‘About’ page, and I would thread a sentence in a blog every once in a while. But a few years ago, really in 2016, I was kind of going along … I was on QVC in December of 2015 … I had been on there for a year, I was loving life, things were going great. I was getting all these brand deals. And all of a sudden, in 2016, a lot of it stopped. And it took me almost two years to start to get empowered with what was happening. But for about two years, I was just like, ‘What the flip is going on? I don’t understand. I thought God wanted me to do this great thing with my life, where I was supposed to take my story and help people. I’m doing that in the best way that I can. I don’t understand what’s going on. This is crazy.’ And I actually had to really give up on a lot of the dreams that I had had for myself, because things were not clicking. And what I now know in hindsight … although if you would talk to me then, I would be a miserable version of myself, because I was so confused. I was not going to be this eloquent about this back then!
But what I have learned in hindsight was, it brought me to my knees in a way where I was kind of like, ‘All right, well, what do I have to lose? I might as well try to talk about the one thing that I know more about than anything in my whole life. And talk about the one thing that brings tears to my eyes just thinking about it. And talk about the one thing that moves me in a way that nothing else does.’
And what I mean by that is, when I meet someone who’s struggling with their body, in ways that I can relate to, nothing moves me more than being able to be there for that person. We all have had struggles and I feel connected to anyone who’s a human being. But there’s a different layer, and a different intensity, when it’s somebody who has gone through something similar to what I’ve gone through.
Lauren: It changes the way you live your entire life.
Nitika: Oh, absolutely. But I didn’t want to hear it! I didn’t want my life to be about my condition. I really didn’t.
Lauren: You were in that positivity spiral.
Nitika: Yes, I was in the pink bubble a little bit — that’s what they call it sometimes. I just wanted it to be free of that. So it took me a while. And then at the end of 2017, I was like, ‘Okay, this is some BS. I don’t know what is going on right now, but there’s literally nothing that I have to lose anymore. So I’m just gonna talk about this a little bit, and see what happens.’ And everything changed when I started talking about it. Brand deals started happening; literally brands that are specifically related to psoriasis and psoriatic arthritis. And I was just like, ‘Really, you guys want me to talk about this?’ This is crazy! And just countless things started coming together. And not only that; my life felt so much more enriched because I felt like whatever I was doing was coming from the most pure, divinely connected part of myself. And so that kind of led me to Chronicon, and it’s been a couple of years of really diving into those conversations. And then last year, I was actually at theCURVYcon, which my friend started, and it was the first time I had been there. And I had this experience of walking around theCURVYcon, thinking,‘Oh my God, these women! They are so beautiful and magnificent!’ In this environment, they are revered for every inch and curve that they have on their body. And it was breathtaking, because that is really how the world should be, right? It shouldn’t just be in this one room. And I was so inspired by every woman in that room … it was multiple rooms, thousands of people! But I was so inspired. And I thought, ‘Oh my God, what would it have been like for me with my body conversation of … being afraid to get a manicure or pedicure because I have psoriasis all over my hands … or, afraid to go and try on clothes in the dressing room because I’m afraid I’ll flake. Or, not knowing if certain clothes are going to fit me because I’m flaring up because I have a hormonal imbalance that’s connected to a vitamin D deficiency that’s so intense.’ All these things that most people take for granted, because they don’t have to think about it. And I kept thinking about that. And while I was there, I was, like, ‘Am I supposed to start Chronicon?!’ It took me a good seven or eight months to really accept that this was what I was meant to do. Because it feels really big, honestly, when I think about it. Not just because … it needs to be huge, I need to take a lot of money.
But I know how many millions of people are suffering. And it feels like a place that they could all potentially belong at some point.
And so that just feels like a lot of energy to hold.
Lauren: Yeah, of course. It’s a big responsibility.
Nitika: Yeah, it does feel like a big responsibility. But I also feel like I’ve been preparing my whole life for this, and I’m doing everything I can to align myself with the right people, and the right support. And also take care of myself in new ways as I embark on this journey. So, it’ll be happening October 28, and live in New York City, and it’ll be here in, like 30 seconds, it feels like!
Lauren: It’s fantastic. And really intelligently, you’re doing it in one day. Because someone who has a limited number of spoons, or limited energy supply, might not be able to do a whole weekend, or three days. But one day, and you’ve spaced things out where there are breaks and everything. It’s very mindful of the needs of people in this community to recharge. It looks like it’s going to be fantastic. And I’m super excited about it. So, hopefully more people will hear about it …
Nitika: Thank you so much. That’s so sweet. But yeah, I really was very conscientious about just doing it for one day. Because everyone was, like, “Oh, how many days is it?” And I was, like, “Girl, it is one day.” I know I can do it in one day. And really, I don’t have capital; I don’t have all this money coming from some unknown place. It was just me figuring it out. Now I have people helping me, but in the beginning, I thought: I need to set this up so that if no one shows up and tries to help me, I will still be okay. That was literally the way I thought about it, that if I don’t get help from this partner, if I only get one partner and I thought I was going to get 10, whatever happens, I will be okay. I won’t put myself in more debt. I won’t deplete my energy so intensely that I will never be able to do anything ever again. I’m so fortunate with Healthline. I’ve been working with them for years, and I just basically called them and said, “I have this idea! I really think you should just do it with me.” And they were, like, “Sorry, what now? We don’t do live events.”
Lauren: And you were, like, “But you do now!”
Nitika: We kind of went back and forth, and I think it took them a second to really understand what I was trying to do. And then the second it clicked, it clicked so beautifully, and it was what I knew was really meant to happen. But you just never know; you can feel those things, but life happens, and all of that. And they have been … I don’t think I’ve ever enjoyed working with a partner more. And they’re the biggest partner that I’ve ever worked with. So normally when you think of business, the bigger the partner, the bigger the stakes … the less you enjoy it really, because it’s so scary and stressful and hard. Oh my God, it is the exact opposite with them.
Lauren: Do you think it’s because they have an understanding of what the chronic illness world looks like?
Nitika: That’s a really good question. I think, one, the team that I work with over there is exceptional. But I really also see that the foundation that they’re working on, and that they’re working on top of, is really solid. Their bosses and the people that they have to report to, even if I’m not talking to them, I see that they’re taking care of their needs. They’re making sure they’re getting enough sleep. They’re shutting off their phones right when they leave the office, so that they don’t work all the time. Because you could. I really respect that, and I think that makes for much happier employees and a much happier experience. And then when I see them, and I get to connect with them, they’re coming at me with a full cup. They’re not coming at me depleted and angry, and ‘Oh my God, my boss just wants this and they don’t get it.’ No. I sense from the conversations I’ve had with the people that I work with over there that their bosses take the time to understand what’s wrong, what’s happening, how can we make this better? I’m, like, ‘Really?!’
Lauren: I guess the thing about that is, you can’t call yourself a company like Healthline and not have your employees’ health in mind, right? It sounds like their morals are matching their mission.
Nitika: I really feel that, because I’ve worked with many health and wellness companies over the years. And that is not always the case, that they’re aligned in that way.
Lauren: They’re still businesses at the end of the day, too, and that certainly influences how the behaviors are within a certain company.
Lauren: So how are you balancing the demands of work and life now? We know that you’re doing really well in terms of managing your symptoms. But you’ve got so much on your plate. You freelance with a lot of different projects. And a lot of it is so personal. So I imagine it takes even more emotional energy to commit to these projects. How are you finding that balance working out for you? Is it your passion that’s getting you through? Are you having to tell yourself to pull back in certain areas to protect your energy, as well?
Nitika: All of it! (laughs) And it’s so funny, because I actually really enjoy having conversations with people like you — because I feel like it reconnects me to the “why” behind what I’m doing. And that is everything, and that’s a huge part of it, to be honest with you.
Getting in conversations with new people, or people that are in my life that are going through similar things, or whatever it might be … that will connect me to that “why” … I feel like that has been the greatest medicine during this time.
And I have to say, I’m not flawlessly balancing everything. That has not been the case. This month, the last two weeks, because we’re in August now and we’re recording this, but obviously it’s going to air later … but in August I found that because it’s a slower month … which I don’t actually like very much … I’m an Aries and I want everything happening yesterday …
Lauren: I’m a Leo, I’m with you!
Nitika: The fire within us. Holy fire! I don’t love the slowness, but what I’ve tried to do this time around is say, ‘Well, I can now stock up on my groceries.’ This morning … it’s a Friday when we’re recording this and I have about 100 emails that I could be just banging out … and I was like, ‘Nope, I’m good. I’m going to curl my hair so that I feel good, so it looks good for the weekend.’
Lauren: And it looks great. It looks super cute!
Nitika: Yes, and I don’t have to think about it for the next three days until I have to wash it again. And I’m gonna go get a manicure, which feels like such a big deal!
Lauren: Which also looks great!
Nitika: You know, these things right now … I could so easily just stay in my apartment with my computer and not lift my head up. I think I did that for a little bit. And so now I’m trying, as I have a little bit of space … although I don’t love the space … I’m, like, ‘Okay, how can I make this work to my advantage?’ I went out and had some fun on Wednesday night, which was literally just seeing some friends for ice cream and dinner.
Lauren: But that’s fantastic.
Nitika: It was revolutionary, okay! I was, like, ‘Oh my God, I haven’t had this much fun in a while,’ because I have just been working nonstop.
I believe in therapy very deeply.
And I talk to my therapist every week; I’m going to talk to her after our call, actually. And she says, “So Nitika, can you talk to me about anything other than work right now? What’s going on?” And I’m, like, “Nope, nope, this is pretty much it!”
Lauren: It’s all I’ve got bandwidth for right now.
Nitika: It’s all I’ve got bandwidth for right now, really. So I’m just embracing that as much as I can, and trying to nurture myself as much as I can.
Lauren: Re-prioritizing self-care, it sounds like, too.
Nitika: Yes! I have noticed that I just kind of need a hug often — like literally the physical hug and nurturing has been really important to me during this time. I’m single. So I’m, like, ‘Okay, I have to pay someone to give me this nurturing hug!’ I was talking to my girlfriend yesterday, and she said, “Yeah, I literally could pay someone just to hug me.” And I’m, like, “Isn’t that what massage is like?”
Lauren: That’s why I get massages!
Nitika: I’m more of a facial person, or I’ll get my hair done, or whatever. I’ve never been a big massage person. Especially with all my skin stuff … that’s like kind of the last thing I would think about. But I’ve been getting massages, and I’m, like, “Just hold me!” (laughs) And it’s been great, you know? I mean, that’s kind of embarrassing, but it’s totally true!
Lauren: Well actually, I remember seeing something recently … I don’t know whether it was an Instagram post or something … and it was about human touch, and how we actually require a certain amount of touch to balance certain hormones in our bodies. And that we actually need a hug that lasts 20 to 30 seconds — which, in reality, is kind of a little bit of a too-long-for-comfort hug, right? But the idea being that we need to seek out those kinds of physical experiences where we can be close to people. Because they make us feel better. They help us heal ourselves.
Nitika: Yeah, I really agree with that. And I think it’s important for us to find ways to have that no matter what circumstance we’re in. So that’s been part of what I’ve been doing. And I think the food thing has been really important. I am on this autoimmune Paleo diet; my doctor tested me for all the things, and that works the best for me. At the same time when I was launching Chronicon, I was having gluten-free pizza … and not cheeseburgers, but hamburgers with gluten-free buns. And all those grains … it’s not the worst thing in the world, but the grains don’t really do well for me.
Lauren: They don’t help.
Nitika: Yeah, they really don’t help, and I was like, who the flip cares? I need this thing in my body right now, so badly. So just being gentle with myself and saying, ‘Okay, that was a fun time; I kind of needed to not be so rigid and not care so much.’ And now I’m actually enjoying getting back into a little bit more grain-free, a little bit less sugar … you know, all those things. And it’s feeling really good actually, versus feeling like, ‘Oh my God, you have to eat a certain way. Otherwise, you’re a mess-up or something.’
Lauren: Well, it sounds like you’ve really been able to release those self-criticisms because of your experience with being so positive and living in the pink bubble. You’ve been able to sort of go, ‘Okay, so I don’t need to tell myself to be too happy. And I also don’t need to tell myself to be too sad.’ So you found that balance in general, and then finding it within all of your work projects … it sounds like that’s all sort of fallen into place in a beautiful way.
Nikita: Oh, thanks!
Lauren: So we’re going to sort of jump back into the past, but I guess also the present, with my next question, which is about being confronted and being forced to justify your illness. I’m wondering if you’ve ever had experiences with that, particularly with something like psoriasis, where maybe people didn’t understand the pain you were in, or the accommodations that you needed? And I’m also curious to know whether being a woman of color has influenced those experiences as well, and whether you’ve found that you’ve had to come up against more adversity or roadblocks because of that.
Nitika: I think the first part of the question, basically you’re asking: Did people ever not understand what I was going through? And yeah, big time. Big, big, big time. And to be honest, I didn’t even understand. That was a lot of it, you know. Because I got this so young. I’m Indian and my parents are immigrants, and I was never really great at school — that was never something that I was very good at. I’m a very experiential, sensorial person — and that’s not the way you learn in America, mostly. So it was very one-dimensional, linear. And I don’t learn that way. Even to this day, I’ll say, “Okay, I know you just sent me all of the information and emails, but I need you to call me. I don’t understand what you’re saying. My brain is not absorbing this information.” But I know I’m smart now, so I can own that. And it’s not a big deal. It’s actually empowering. To be like, “Oh, yeah, I don’t learn that way, girl; you gotta give me a call.” And it’s fine. And then people say, “Oh, great. Okay, great. That’s good to know.” But when I was growing up, I didn’t know that, and my parents didn’t know that … and the reason why I bring this up as it relates to people not understanding me … is because …
A lot of what I was experiencing was so much emotional heaviness, so much sadness, so much depression and anxiety and self-hatred — which is why I talk so much about self-love.
And no one really understood the depths of that, because I’m also very strong.
Lauren: So you are able to push through when you have to.
Nitika: Yeah, I’m able to push through. And it was just it was this pile of: I’m devastated, I’m hurt, I’m upset, I’m ashamed, I’m embarrassed, I hate myself. And then I have to go to school and try to push through, and be liked and have friends … and my parents want me to do well in school, and that’s not happening. And then another thing that used to happen a lot was because I had so much inflammation in my body, I always felt like I had a fever. I felt like that a lot. Now it rarely happens so when it does, I really can tell. But I used to feel like that two or three times a week, if not five days a week. I would go to the nurse’s office a lot because I felt so sick. And people would say, “It’s just a skin disease. What’s wrong with you? Get over it.”
Lauren: Whoo boy, I hate those three words! “Get over it”. My least favorite!
Nitika: I know! And now that’s something — even when I’m looking for doctors and stuff — that I really look for … do I have people in my life that believe me when I say something’s wrong? Even if they don’t maybe agree with my conclusion of what I think, or maybe they’re still not sure what it could be, or whatever. My acupuncturist is a great example of this, because I was having some hormonal balancing issues, and I really didn’t get what was going on for almost a year. And I was really struggling with it, and it ended up being a deficiency in vitamin D — which, if you have autoimmune disease, apparently that’s a big deal. I did not know that.
Lauren: A lot of people have vitamin D deficiencies, whether or not they have autoimmune diseases. But those of us who have autoimmune issues, it’s even more difficult to balance our hormones because of it.
Nitika: I did not know that.
Lauren: It’s all a learning curve.
Nitika: So I didn’t know that and I was banging my head up against the wall. My weight skyrocketed. I was feeling dizzy all the time. I felt like I was going to faint; all these things. And that was just this past year; I just started getting balanced in May of 2019.
Lauren: Sounds like that was actually an example of you not understanding yourself — partially because you don’t have the background medically to understand that, but you weren’t listening to what your body was telling you … and you sort of let it go on for a year.
Nitika: No, it wasn’t that I wasn’t listening. I really didn’t know that that’s what was happening. I was getting tested. I was doing all of these things. But nothing on my test was so clear that it was vitamin D. I was doing everything I could. What I thought it was, actually, and what my doctors thought was that it was like a hypoglycemia thing happening — because it feels like low blood sugar. And I have low blood pressure and I would feel like I was going to faint a lot, and all these things. So it wasn’t that I wasn’t listening. I couldn’t figure it out. I tried for a year. But in that, it was a lot of me canceling on things, a lot of me having to say, “I don’t have the energy to do this; I have to go home, I feel like I’m going to faint. I’ve got to go to the doctor. I can’t do this; I can’t do that.” It was really hard because I hadn’t really been in that position in quite a few years. And it just took me back to my childhood when I had to do that all the time. So yeah, that was a huge part of things. You asked also about being a woman of color and the adversity in that …
I think being a woman of color, we have to fight in a way that I think a lot of people don’t necessarily understand. But I don’t know that I was aware of that specific fight when I was growing up; I think looking back now, I see how much that layer was there in my life.
But my parents were immigrants and immigrant parents … they’re complicated in a lot of ways. But my parents, they never talked about racism or anything like that in that way because they never experienced it growing up, and all those different things. So it wasn’t prevalent in our conversations at home. Like it might be with an African-American family … like, “This is ingrained in this country. You need to know” … all those things. But as I’ve grown up, I definitely see how smart people think I am, or how capable people think I am, and all those things … they feel like they’re connected to that often.
Lauren: And do you think it’s influenced some of your medical experience, too … in terms of doctors maybe not believing in you because you’re female, or not believing you because you’re a woman of color? Has that ever happened to you, as well, where doctors have sort of looked at you like … you’re wrong?
Nitika: Yeah, I think mostly because I’m a woman. I feel that mostly because of being a woman.
I’ve experienced it many times when a doctor has not gotten me, and has just not taken me seriously at all. And that has led me to be like … I need a new doctor. You know what I mean? But that took me years to understand.
Lauren: Same! When you’re brought up believing that doctors are God, which is, I think, how so many of us have been brought up … to come across doctors who suddenly aren’t serving you, it’s very confusing, isn’t it? It really throws you off center, because you don’t know what you’re supposed to do. But those of us who’ve found our way through it have found our way through it because we’ve gone, ‘Actually, I’m the one that this is about … and it’s not about them. It’s patient-centered.’ So you sort of redirect the care. But it’s very interesting the way that happens to so many women, and for so many of us It takes us years longer to get diagnoses that men get, you know, tomorrow.
Nitika: Yeah, that’s a huge issue. It’s a huge issue. And I think as a kid, we’re just taught that doctors are positive authority figures and all of that. I definitely had some really shitty experiences as a kid with doctors, and then growing up, I think I started to realize, ‘Oh, this is what it feels like when something doesn’t feel right.’ It’s even just that simple, like when you’re with a friend or you’re dating or whatever it might be, and you feel, ‘Oh, this is a red flag. This is something that doesn’t feel right. I don’t need to understand why it doesn’t feel right. But I can feel this is not feeling right to me.’ And just that simplicity of understanding of yourself and what happens inside of you when things don’t feel right … and what happens when things feel really good, can help you be guided, I think, through that process a little bit more easily.
Lauren: And part of that is also being able to get out there and live your life so you know the difference in those experiences, isn’t it? So, how important do you think it is that we talk about chronic illness? Obviously, you’ve started a whole convention around it. So it’s very important. But do you think continuing to talk about these things in normalized conversations about able-ism and variations in our health … do you think that they’re the key to finding a way to the the cures for these things and bringing more awareness? What do you think?
Nitika: I think cures is a whole other thing. But what I will say, is that why I wanted to start talking about this is because there’s so much shame and isolation in these experiences. And why I thought it was important that we talk about it, and meet and do all of that, is because I was literally sitting there one day and I was thinking, ‘This is the most isolating experience I’ve ever had.’
Even getting divorced was less isolating than this; this is just so isolating.
And then at the same time, by 2020, the National Health Council says there will be 157 million people that will have a chronic illness. I was doing the math in my head and I was just, like, ‘Wait a second … I feel completely alone. And I feel so much shame that I am the only one … and I say that in quotes … I am the only one that has it this bad, that has this particular condition that looks this way, whatever. And there are 157 million people that will have a chronic illness by next year? There’s 133-plus million people that have a chronic illness now. So I was, like, ‘Wait a second, why are we not talking to each other? Who is connecting the dots? What is happening? Why are there millions of people … ‘ And then even just meeting people — whether I’m speaking at an event or meeting girlfriends or doing anything — and I meet someone who will say, “Oh, yeah, I have PCOS. And my mom has endometriosis.” Or, “I had this thing happen, and that thing happen …” “I have Graves’ disease. I have this … “ And I’m, like, ‘Oh my God, I didn’t even what half these diseases were before I started talking about this stuff. And I’m still learning. I mean, I do not claim … I’ve had people come to me about conditions and I say, “I don’t know!”
Lauren: I’ve had that, too.
Nitika: So, that’s why I wanted to talk about it. Because I thought, I don’t know if I’m going to be blessed enough to see things be cured in my lifetime. I don’t even know about the curing part; that’s a whole other thing.
I’m just a patient. But I do not want other patients to live in shame and isolation. That’s really it.
Lauren: That’s really wonderful. And one of the things you mentioned earlier, as well … we were talking about how you’ve taken certain medications to manage your symptoms … and you’re doing AIP, which is the autoimmune Paleo protocol. Are there any other things that you’re doing? In a typical day, do you work around your symptoms and work around managing things? Are you aware of it, or is it sort of in the back of your mind now?
Nitika: It’s definitely more in the back of my mind because as I said, I’ve had this stuff happening in my life for 30 years now, almost. I do manage my symptoms in a way that’s just kind of inherent. So it’s not like, ‘Oh, I’m sick, so I have to go do this thing.’ It’s just like, ‘Oh, my body needs X. So I’m just going to make sure I do that.’ And not maybe put as much emphasis on why I have to do it, but just kind of take care of myself. So for example, I really try not to have meetings before 10am, outside. On the phone is a different thing; I can be in my pajamas, sipping my coffee, and still chill.
Lauren: I am 100% wearing pajama bottoms right now!
Nitika: You look great! I would have never known. And I am 100% not wearing any makeup. I was just like, I can’t.
Lauren: And look how … just amazing your skin is now, too.
Nitika: Thank you. But yeah, so that’s like one of my rules. And it’s really because I have such a sensitive nervous system. I need time in the morning to wake up in a way that is gentle. I wake up usually at 7am. But I need two hours to feel a little stable.
I need time to make my special breakfast, and get the coffee that I want, and do my things the way that I need to so that I feel stable in the morning.
And in my older age, it’s also become true for going out really late at night, and stuff like that. I live in Manhattan, so I wish I was still that girl that said, “Oh yeah, 10pm birthday party. Let’s go! I’ll be home at 2 o’clock in the morning? No problem!” No, no, no. Absolutely not.
Lauren: I can’t do it either. The good thing is that you end up having a crew of women who you’re friends with who are also, like, “No, I’m in my 30s. Now … I don’t do that.”
Nitika: Exactly. Absolutely. So you know, it’s things like that. So I do take care of myself and manage my symptoms in those ways. But I think even if you don’t have a chronic illness, there are things that you can be mindful of. Because I’m also thinking about the people that I spend time with, too.
I find I’ve been really careful about: Who are the people that drain me, or that make me feel bad about myself? Or that trigger that anxiety or co-dependency? And who are the people that make me feel completely comfortable in my skin, literally and figuratively, and just make me feel like they fully see me? And that I can be all parts of myself with them?
So that has been a very healing process for me as well.
Lauren: That’s so true. I couldn’t agree more with that. So I like to wrap up my interviews with a couple of Top Three Lists. I wanted to start with the first one: What would your top three tips be for someone who maybe just entered this chronic illness world — just got diagnosed, or is maybe feeling a little off, and thinking it might be something — that they’re waiting for a diagnosis … what advice would you give these people who are part of our world?
Nikita: I think I would say …
Know thyself. If nothing else.
When you say that someone just got diagnosed, the first image that I had was a girl getting diagnosed with maybe a skin condition, or an autoimmune disease of some sort, and they’re having symptoms, and they’re just grasping, trying to get an answer. And it’s from a very desperate, understandably desperate place. I think we’ve all probably been there at some point, if we have a condition. I know I have. I think the turning point for me was when I stopped grasping for advice — because I usually got off on the wrong track often. I usually did things that I wasn’t really wanting to do, that I didn’t really feel good about doing. Things like that. So, know thyself. Go to —potentially, if you can afford to — an integrative doctor, or a doctor that will take giving you a series of tests seriously. So if you have to go to a doctor that’s covered by your insurance, and integrative isn’t, that will test your gut, that will test your hormones, that will test all of the different allergies that you might have … that will test things beyond the normal two, three tests that most doctors say, “Okay, fine, I’ll give you this test.” And know what is going on in your body. There have been times … like when I was going through that whole vitamin D deficiency thing … I thought maybe I had candida, because I had had that before. I just started eating the candida diet; I was totally just depriving myself of all these foods because I didn’t know what the hell to eat. It took a while to figure it out, but it would not have been helpful if I had just sat there and taken all this advice from all these people … “Oh, you know, when I had that happen, this is what I did. And maybe you should try this, and drink this thing, and eat this thing.” A lot of times when people tell you to do that stuff, your body doesn’t want those things. So that’s like three tips in one … finding out what it is, get those specific test results, then start to implement what your body needs and stop grasping for that advice from people. It’s different when you mindfully and intentionally say, ‘Okay, you know what, this one friend that I have really gets it. I’m going to have her be a sounding board. I’m going to make sure that we talk about things, etc., etc. Versus just calling 50 friends and saying, “Oh my God, what do I do? What do I do? What do I do?”
Lauren: No, that’s really great advice. And then the other Top Three List … you were saying you’ve made particular lifestyle changes and adjustments just to manage your symptoms on a daily basis — things like AIP and prioritizing rest, and the things that you need for comfort. Do you have any top three cheats, guilty pleasures, secret indulgences, comfort activities … three things that you’re not willing to compromise on when it comes to your joy?
Nitika: Okay. So I would say, sometimes at the end of a really long day or the end of a really long work week, I am like, ‘If someone does not give me a gluten free pizza right now, I might like have a meltdown.’
Lauren: But that has dairy in it.
Nitika: It does, and it’s not on the AIP protocol, I know. But it does not have tomatoes; I never eat tomatoes. So I eat it with pesto sauce, or a white pizza. But the dairy isn’t great for me; it doesn’t affect me as much as some of the other things. So it’s kind of my one cheat, you know. And then I try not to eat dairy in other situations. But that’s when I go to the motherlode … I’m like, ‘Give me all of the dairy! Give me all the things! I need it really badly!’
Lauren: So, gluten free pizza with a side of ice cream is what you’re saying?!
Nitika: I never eat dairy ice cream. I’ll never eat that. But for some reason, gluten free pizza? I don’t care right now. I don’t care. I don’t even remember the last time I had a regular ice cream. I’ll have the vegan ice cream, the dairy-free ice cream; I don’t mind it at all. I think it’s a great substitute.
Lauren: Yeah. It’s the cheeses that I have trouble with, because I don’t like any of the cheese substitutes. I’m sorry. Yeah, I’m sorry my vegan friends out there … but they’re just not the same, are they?
Nikita: I do have a vegan cheese that I’ll use sometimes if I want to make a grain-free sandwich of some sort. And that’s fine. Gluten free pizza, with no tomato. And then I would say, I’m a big “guilty pleasures” in terms of activities. I’m just really into mindless, fluffy, rom-com TV. I really am. I used to think it was because I wanted to be on TV for so long, and why I watched so much TV as a kid. But I just feel like it’s nurturing when I am laying on the couch. And I really also try to be mindful about not picking up my phone, not picking up my computer; I fail, especially at the phone one, quite often. But I try. And I watch TV for pure entertainment, and just kind of zone out; watch something really silly, watch something really light. There’s no news on, that kind of thing. And then, the thing I do every single day is I get an oat milk latte from my favorite coffee place, Joe’s Coffee, here in New York City. It’s two blocks away from my apartment. They all know my name. I go there every day! And when I have to leave town and not have it, I get sad. That’s how much I like it. And even when I’m really not feeling well, and that was kind of how it started … I would go walk to Joe’s Coffee because I could handle that, even if all I did was go and walk right back home. And it just made me feel better, you know?
Lauren: It also allows you to commune with people, too, even if it’s brief. And get some fresh air and a little exercise. Yeah. That’s great. Can you tell the listeners where they can find your work, and where they can find Chronicon information as well?
Lauren: Nitika, thank you so much. It’s been such a pleasure talking with you today. I’m so glad that we have advocates in the chronic and invisible illness space like you … so thank you so much for the work you’re doing for all of us in this community. And we hope to talk to you again soon.
Nitika: Thank you so much for having me!