Story At A Glance
- The CDC estimates that 133 million Americans suffer from chronic illnesses — and this number is expected to increase to 157 million.
- Millions of people who suffer from chronic illnesses do so alone, without social support and with financial hardships.
- Nitika Chopra reveals how sharing her own chronic illness story has helped others feel less isolated.
- Chopra spearheads Chronicon, an event that brings together people with chronic illnesses, including other activists like actress Jennifer Esposito.
Nitika Chopra is an activist for chronic illnesses, having been diagnosed with psoriasis when she was 10 years old and psoriatic arthritis when she was 19. It took her some time to feel comfortable sharing her story, but she feels it’s been necessary to help others feel less alone.
The Centers for Disease Control and Prevention estimates that 133 million Americans suffer from chronic illnesses, and by 2020. We talked to her about what she’s been working on and what issues she thinks will be important for 2020.
What are some of the most important things that have happened for you in 2019?
At the beginning of the year, I launched a podcast called The Point of Pain. And through launching that podcast, I shared some photos of myself when I was the sickest that I had ever been. These images were things that I had saved away and not shown anyone for 17 years. It was really powerful.
So, it's been a very organic evolution of putting my story out there and really just trying to be honest with people about what I've been through. I also was able to see that it really helps a lot of people feel less alone. And then I ended up deciding to create Chronicon, which [happened] on Oct. 28. I think the biggest thing I want people to take away from it is that not only are you not alone, but now you're in a room of hundreds of people and some people who are even making careers out of some of the lowest moments of their lives and really creating a space for themselves to thrive.
Nitika Chopra speaking at Chronicon. Photo credit: Laurel Creative
What else are you hoping to do next year?
I would like to bring Chronicon to more cities next year. I started small because I wanted to make sure that my health could survive taking this on, because I didn't know if anyone would help me. A lot of people showed up to help, which is such a blessing. And so I would like to take that help and expand it to more cities; I think definitely still having it in New York and also having it in Los Angeles, and maybe another city and taking it from there. And then I'm really looking to gather some data after this event and see. I'm sure there's going to be things that we're going to need to improve.
What are the main messages you want to convey?
I think it's twofold. One is that I want to convey to people who actually have chronic conditions that they are not alone. We're strong and powerful and beautiful. And we're capable. And then I think the other thing is the media thing and to show others that we're here, we're not going anywhere.
Who is really important in this field of activism for chronic illness?
There's a couple of people. Jennifer Esposito, who [spoke] at Chronicon, she's a well-known actress. She has celiac disease, which a lot of people poo-poo as just the gluten thing. It's not that big of a deal. But Jennifer's a really strong example as to why that is not the case. And she actually got agoraphobia from having her celiac disease. And she had a really intense, intense experience with her diagnosis, and people didn't know what it was. So, she's really passionate about sharing her story and helping others. And I think that's been really awesome.
And then Jonathan Van Ness. He's just shared that he was diagnosed with HIV. He's already been open about the fact that he has psoriasis. And you know, he's struggled with anxiety. His revealing his HIV status is really, really significant and so important for all those people out there that have felt such shame. There's still so much stigma around that condition. So I think Jonathan revealing that is really, really, really powerful.
Are there any books or movies or other types of media that have really inspired you this year?
I'm an audio learner and I love listening to podcasts. My favorite is How I Built This with Guy Raz on NPR. It's just so inspiring because I'm trying to build basically a startup with Chronicon right now. They sit down with founders and you get to hear their founder story, about how they believed in themselves and had so much passion and said, “I have to do this even though this makes zero sense.” It’s like my therapy.
I also really love Ingrid Nilsen. She has this podcast called One Step. She's really transparent and I like breaking that cycle of isolation. I love to listen to things in which I feel less alone.
If there was one thing you could change for 2020 what would that be?
That everyone had all of their medical bills paid for. That's simple, but that could literally change millions of lives. It's devastating how much people are brought under so much financial stress. It's one surprise surgery, one chronic condition that needs special medication or multiple visits to specialists. I'm very aware of my own privilege in that specific area.
This interview has been edited for clarity and length.