Send Me More Stories About Chronic Illness
“Because I have felt so isolated in my life,” says Nitika Chopra. “I have always valued community.” But when you’re chronically ill, community isn’t always easy to find.
That’s why Chopra founded Chronicon, an annual event for individuals living with chronic illnesses to connect with one another, share stories of resilience, and hear speakers on topics around illness and empowerment. Chopra founded Chronicon in 2019, with the first event being held in NYC last October with over 250 in physical attendance and over 2,000 live-streaming it. The conference included speakers such as Stacy London, Jennifer Esposito, Mira Mariah, Phillip Picardi, and many more. While COVID19 precautions do not allow for an in-person conference this year, she and her team are organizing virtual events to foster a sense of community at this uncertain time.
Isolation due to chronic experience is something Chopra knows firsthand. Her experience living with psoriatic arthritis has made her a firm believer in the power of connection, and the need to find silver linings where you can in life. However, this did not come to this 39-year-old immediately. Chopra, born in Ohio but now living in NYC, was diagnosed with psoriatic arthritis in her teens. In her age of adolescence grappling with identity formation, she often found herself defined by her diagnosis based on the perspective of others’ around her. It was a long journey of pain, insecurity, and depression, but she soon found a voice in the creative sphere — using her storytelling and speaking skills to bring joy to those around her.
In 2010, she founded lifestyle magazine Bella Life with over 100 contributors; a few years later in 2015, 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 on QVC, where she makes regular experiences on television to talk about the skin and promote a diverse range of beauty products. It took awhile for this NYC-based creative entrepreneur and television host to be comfortable in her own skin, but now she is on a mission to empower others with every step of her work.
In this Q&A, Nitika discusses her experience in entrepreneurship and work in the community space, while reflecting on her personal diagnosis journey as well.
Walk us through the early days of your diagnosis.
I first was diagnosed with psoriasis at the age of 10 and then psoriatic arthritis at the age of 19. When I got the psoriasis, I remember my parents concerned, but I did not understand it totally as I was so young. It was probably over a year period, that things really just took such a harsh turn and the psoriasis got so much worse, going from one spot to just covering, like, 90% of my body and nine years later, I was later diagnosed with arthritis. After being diagnosed with psoriatic arthritis, I felt shocked and overwhelmed in this way that I couldn’t fully process it. Once things started getting worse, it hit me. I felt very frustrated, very disappointed, and like, very just embarrassed, sad, which took a toll on me emotionally.
You mention that for the first five years after your diagnosis you were in severe pain. How did that impact you and your development?
I definitely isolated a lot at that time. I didn’t have a lot of friends because I didn’t really feel like putting myself out there because I didn’t really feel like I could partake in events that other kids my age attended. People don’t necessarily realize that something like a sleepover would be challenging for someone with a skin condition like psoriasis because psoriasis is really itchy and the skin bleeds when it is heavily itched. Therefore, I would not be invited to events or just kind of opt out myself.
How did you cope for the first decade after your diagnosis? What helped you cope with these emotions?
It definitely was hard because in my Indian culture, there is so much stigma around mental and emotional health. We are not necessarily supported or encouraged to talk about our feelings. However, I definitely was the black sheep in my family who defied these stereotypes as I was experiencing intense emotions that no one in my family was experiencing. When I was 28, I took the step to gain professional support for my emotional well-being and visit a therapist. Therapy really helped me understand what I was feeling and take better care of myself.
In my Indian culture, there is so much stigma around mental and emotional health. We are not necessarily supported or encouraged to talk about our feelings.
How did your family and friends build a supportive network around your diagnosis? Please iterate.
The most supportive person for me in my life is my mom. Not only did she take such great care of me, she was also kind of like my best friend growing up. I didn’t have to say or explain anything to her because she always knew what was going on with my health. In high school, I had a few good friends that accepted me for who I am and didn’t identify me with my psoriatic arthritis. It wasn’t until I really did the work on myself much later in life and embarked on my self-love journey that I started to build a lot more friendships. It took awhile and I never really had a group of friends till I was 27.
What shifted your perspective “to be more committed to [your] happiness than [your] suffering.”? Was there a particular moment/instance that contributed to this change of mindset? Please expand.
I have definitely felt limited and restricted, which is actually very valid at times. In my early 20s, I started attending coaching workshops and trained to be a life coach, which was super intensive. From those experiences, I ended up just really understanding that there’s this choice that we are faced with in life, either feeling like a total victim or feeling empowered to overcome the challenge being experienced. I remember this particular moment in my life when I was once urgently invited by my voice coach to audition for a role. Even though I loved singing, I had to decline the offer because it would take me hours to exfoliate and moisturize myself in order to present myself there. At that moment, I realized that I would miss this opportunity because of my psoriasis. I ended up really understanding that I did not want my psoriasis to define me and had the power to accept a choice to overcome it. From that point onwards, I started to look deeper within myself and implement my happiness along this journey.
You mention that self-care was your saving grace. What self-care activities did you engage in?
Self-care catalyzed my self-love journey, which did not happen overnight and it is something I have to invest in even now. It empowered me to change my trajectory and make the choice to be more committed to my happiness. One thing that really inspired me was journaling out a bunch of my favorite things or writing out a bunch of innovative ideas, things like that. I would also paint my nails and focus on the pretty colors or something that made me feel good. I collected a bunch of pictures at the time of things that inspired me and would put them in frames to decorate my apartment. In my darkest days, these small self-care activities gave me hope and pushed me forward.
What was your journey towards entrepreneurship like? Did your diagnosis affect it at all?
I did not do well in school and I didn’t really know what I wanted to do but I was always fascinated by creativity and entrepreneurship. When I was 28, I launched Bella Life, an online magazine where I had over 100 contributors who shared my same vision for creating a space of heart-warming conversations, from living with chronic illness to self-care tips. When I was a bit older, I became the host of Naturally Beautiful, a Talk Show airing on the holistic lifestyle channel Z Living. I now have a role as a luxury skin-care spokesperson and expert on QVC. I also founded Chronicon, a platform for individuals living with chronic illnesses. In my entrepreneurial and professional journey, my diagnosis rather inspired a lot of the work I pursued.
The community you have built for individuals living with chronic illness is wonderful. What inspired you to create ChronicCon?
The idea of Chronicon was inspired by creating a space to connect individuals with chronic illnesses, which I didn’t have growing up. My vision was to bring us all together and make us feel like we aren’t alone. I organized our first event Chronicon Live in New York City last year, where we had speakers such as Stacy London, a former co-host of What Not to Wear and Phillip Picardi, the former EIC of Out Magazine. It was super empowering to have these leading figures talk about their experiences living with chronic illnesses alongside doing such visionary work in the industry. That’s the jist of what Chronic-Con is all about. This is a platform dedicated to elevating the lives of those living with chronic illnesses, and now that everything is virtual for the foreseeable future we are initiating a lot more online events.
What are the biggest challenges you still face living with your chronic illness? How do you overcome them (if applicable)?
What you think is your greatest weakness is actually your greatest superpower.
I think one of the challenges that I still work through is lacking enough mental and physical energy to do everything that I want and need to do for work and personal life. For example, I could probably do about 2-3 things in the time that an able-bodied person could do like 10 things. Certain activities really wear me out, so I have to be mindful regarding what I do to my body. There’s also the challenge of managing the fact that I could look ‘perfectly healthy’ from the outside and people not knowing what I deal with on a day-to-day basis.
What advice would you have given your younger self when you were first diagnosed?
I think I would probably just say, what you think is your greatest weakness is actually your greatest superpower.
What’s something you would tell an individual who is newly diagnosed with a chronic illness?
I think that there are so many things I could share with someone just newly diagnosed, but I think the biggest thing that I think I also wish I had known when I was first diagnosed is having a crew of loved ones. You should have a group of supporters that can listen to you truly and fully, and cheer you on as you navigate through your chronic illness. If you are scared about going to the doctor or something, you can call one of them. It helps you actively work towards breaking that cycle of isolation within your own life and not keeping yourself separate.
