Tell me a little about yourself, growing up, your childhood, where you are from!
I’m Samantha Konigsberg, I’m 18 years old, and I’m from New York City. I was born in Manhattan and have lived here my entire life. As a child, I was super independent. My mom could put a coloring book or a dollhouse in front of me and I’d be fine for maybe five hours straight, like I needed no one, no entertainment. I was never very athletic, I kind of tried every sport and then I got really into musical theatre, and I did that until fifth grade. Then I stopped musical theatre and did straight acting until today, so I’ve been acting since I was five years old, which is kind of crazy.
What illnesses do you have and when did you find out about them?
I have eight chronicle illnesses, I might not remember all of the little ones because some affect my life way more than others, but I’ll take you guys kind of through the timeline. So I was born with a bleeding order that’s genetic, my mom and brother both have it, it’s called Von Willebrand disease. Basically, my blood doesn’t clot, so it’s super thin, and this really only comes into play in my life when I have surgery or when I fall really badly. I just don’t really stop bleeding, so it can be a lot more serious than other people… When I was seven years old, I was diagnosed with juvenile idiopathic arthritis, which is a kind of juvenile arthritis.… I’ve been on medicine since I was seven for that, and currently, I’m in a great place with that, which I’m very thankful for because I’ve had some rough patches in my life with arthritis where it’s been hard to get out of bed, or hard to walk, hard to go to social events because I couldn’t stand for too long, but the medicine I’m on now helps keep it under control, so that’s great. When I was around seven, I got chronic migraines as well, so whenever it rains or is windy or snowy, any change in temperature that isn’t sunny, I get a migraine, which is super frustrating, but I’ve learned to deal with those pretty well as well. My most severe illness I was diagnosed with when I was twelve. I had been experiencing a lot of pain, so I went to a clinic in Ohio because all of the past doctors couldn’t figure out what was wrong. After a two-week period of trials, the doctor sat me down and said, “I have some bad news. You failed; you need surgery, and you need a surgery that only ten people in the world have ever had.” So I have something called neuronal intestinal dysplasia. Basically, they don’t really know what causes it—they’re studying our genes right now, but they haven’t figured out what it is—but the nerves in my brain don’t send signals to my intestines, so my stomach is really slow, my small intestines is really slow, and by the time it got to my colon, it was dysfunctional. After many surgeries in sixth and seventh grades, I’m in a much better place now.
Being sick taught me to have compassion for other people; you don’t know what they’re dealing with. It also taught me to believe in myself and to just go after what I want, because you don’t know how long you’re going to be here for. So if I want something, I do it. If I want to achieve something, I go for it. If I’m invited to something, I say yes. It’s definitely changed the way I live.
How did life change after you were diagnosed with chronic illnesses? Were there things you could no longer do?
When I was twelve and got really sick, everything changed. I wasn’t in school, so that was a major shift because when you’re not in school you’re not with your friends. I was in Ohio hospitals for two or three months within two or three years, which is a very big change from New York City. I think there was a time in my life when I had maybe three doctor’s appointments a week, so I went from being around kids my age to constantly being around adults. I was really lonely in middle school because I was so isolated and around so many adults and in a different state. And then I went from taking two medicines for arthritis to taking twenty-something a day.
Would you change the fact that you have these illnesses and thus had a very different childhood from a lot of people?
I wouldn’t change having any of this. I think it’s made me a stronger person. I think it’s given me confidence, and it has taught me to be kind to people because you genuinely have no idea what someone is going through. One of the hardest parts with me was that I didn’t look sick unless my shirt was off and you saw my scar; I looked like an awkward, 12-year-old girl. A lot of people wouldn’t believe me. Being sick taught me to have compassion for other people; you don’t know what they’re dealing with. It also taught me to believe in myself and to just go after what I want, because you don’t know how long you’re going to be here for. So if I want something, I do it. If I want to achieve something, I go for it. If I’m invited to something, I say yes. It’s definitely changed the way I live.
When did you start learning how to code? What sparked your interest in code?
I became interested in code when I was in the hospital. It was a different process than most people; I think most people learn how to code and think of an idea. I had the idea, and I was like, “I need to learn how to do this,” because I wanted to do it myself. So I started coding the summer after eighth grade, as soon as I was healthy enough to take a class… The first time I started coding I knew that I liked it; I’m a problem-solver, and coding is the way to solve problems, so it just fit!
What inspired you to create inVISABLE?
While I was in the hospital, I noticed the lack of attention to teens. We were in a really unique position in children’s hospitals where there was really nothing for us to do, but the thing that people don’t really realize is that you can’t even interact with the people on your floor. There was a girl the door next to me, who was my age, who had a very similar surgery — we never said a word to each other because there are laws that you can’t enter other people’s rooms, and when I’m not feeling well and when she’s not feeling well, we’re not going to meet out in the hall and have a chit-chat, that’s just not happening. So there was someone right there, but I had no way of reaching her. That’s when I realized that I looked, I really looked for a way to connect with other people my age, but I have such rare diseases that there wasn’t anything out there for me.. so I said, “Hey, I’m gonna do it,” and I thought of inVISABLE, which my initial idea was a platform to connect chronically ill teens.
How did the name inVISABLE come about?
The name inVISABLE is three-fold… So the first thing is that I have invisible illnesses; no one can look at me and say, “This girl has eight chronic illnesses.” That’s a blessing and a curse. It’s a blessing because I can go about my daily life and when I’m not in the mood for talking about it, I don’t have to. But also if I’m flaring and I need that seat on the subway—and it’s the disabled person’s seat—I get yelled at because “I’m not sick, that’s for someone else,” even if someone else isn’t using it. That was the invisible aspect. The second component, take away the “in,” is “visible.” I wanted to make invisible illnesses and illnesses, in general, visible to the world. I wanted people to know that they exist, they’re real, and these people are also able, which is the third component. We’re capable of everything you are, we are as smart, as able to do and participate in life.
How did the app evolve from your initial idea to the outcome? Did anything come up that you didn’t expect or that surprised you? Any obstacles in creating the app?
It was really overwhelming. I went into it thinking, “Cool, I’m gonna build this, and it’s gonna take X amount of time, and I’m gonna launch it.” Wrong. The second I realized how much work I had to do, I knew I wanted to start sooner than I would be able to, so I launched inVISABLE’s Instagram, which is a place for teens and young adults to submit a picture of themselves and their story and highlight their illness in a positive light so other chronically ill people can be inspired and able-bodied people can be aware that we exist. While I was running the Instagram page, I started coding the app. My initial idea was kind of like a matchmaker; I wanted to have a list of illnesses, a list of interests, and a location, and you make your account and you put all of that information in and it matches you with the most similar users. You would have instant messaging with them, and you would make a friend who was very similar to you, lived near you, liked the same things. That was the initial idea. I’m still really interested in that idea, but it is not what inVISABLE is at all at the moment because when I started coding it, I realized shoot, I don’t have any users yet, so the matchmaking for the few early users would be completely off. I realized I needed to collect users before I could put that feature in so it could be accurate. Now what inVISABLE is essentially the Twitter for the chronically ill, so you still choose interest and illness because eventually, I’m hoping to build in that feature, but then you make a profile and you can post, you can follow people, and it’s more like a venting platform at the moment.
How did you feel when your app released on the App Store?
When my app released on the App Store, that was the proudest I had ever felt in my life. It was a crazy feeling. I had spent nearly two years coding it—I think it was something around 18 months—I had spent so many hours, so many nights, and putting it in the world was so exciting. It was also a little scary because I had been working towards this goal, and then I launched it, and then there was a bit of me that was like “What now?” It was out there, and now I had to reconceptualize where I wanted to go from there.
How do you define success for the app?
To me, the definition of success for inVISABLE is just getting it out there. At first, I really wanted a lot of users, and I got a good amount, and I’m very proud of that, but I think for me, I was able to show myself that I was capable of creating something so much bigger than I had ever thought and I was able to create something that people could use, so that is success… I don’t measure it by the number of followers or the number of users on the app—that’s a bonus to me. That’s great, I’m helping people hopefully and I’m inspiring people hopefully, but more importantly, I’m showing myself that I am capable of following through with a vision and then making it real and tangible, which is so cool to me.
This interview has been condensed and edited for clarity. Images in the video are courtesy of Samantha Konigsberg.4 Loves