Interview With Chronic Disease Advocate Elizabeth Tikoyan
By Anne Gvozdjak
Elizabeth Tikoyan graduated from Northern Virginia Community College Summa Cumma Laude and the University of Virginia with High Honors. During her high school years, she was misdiagnosed for over 4+ years, which left her disabled due to years of medical malpractice. Inspired by her health battle with Lyme Disease, Elizabeth founded Riley App, a health tech platform that connects patients to community and resources to get to healing faster. Elizabeth’s life mission is to #ChangeTheStigma around life with a health condition/ disability, and is proud to pave the way to change how patients/ the disability community is seen across the world.
What motivated you to become an activist for people with disabilities?
There were two distinct incidents that fueled me to be an activist for people with disabilities.
The first incident was when I just started community college and was in between treatment. My medical condition left me physically disabled for a period of my life. I needed to use a mobility aid to walk around, had a medical device on my arm, and had a severe speech impediment.
I remember going to a professor’s office hour appointment right after a 5 hour IV treatment. My vision was blurry, my right side was numb and my speech came out as gibberish from Bell’s palsy. I went to office hours, and asked the professor for lecture notes and permission to record the lecture. He mocked me in front of my classmates in the room, and said, “Who do you think you are? I am not your babysitter, and I am not paid to give you special favors.” I told him he was completely right, and I apologized for asking for accomodations, but I vowed that once I am in a position to advocate for myself without fearing the consequences, I won’t stop.
The second incident happened at an internship at a prestigious medical research facility. Early in the internship, I told my boss, the chief gynecologist, that I had a disability. She told me that I should never tell colleagues that I had a disability, and she even went so far as to sit with me one day and ask me, “Elizabeth were you always like this?” Not knowing what she meant, I asked her to clarify. She said, “how were you before being diagnosed?” and, “were you always like this?” Then she proceeded to ask about my GPA, and when I told her I had a 4.0 GPA, she gasped. She asked what I wanted to do career-wise, and when I said I wanted to be the first doctor in my family, she looked me dead in the eye and said, “you don’t have the intellectual capacity to be a physician, you should look into being a nurse or a physician assistant.”
I just knew after that discussion that she did not know anything about me, or what people with disabilities are capable of doing. I made a complete shift in my career path and had my eyes on living out a career that could impact thousands, if not millions of people with disabilities. Ever since, I have been on a mission to change the stigma around life with a health condition/disability.
2. You personally live with Lyme Disease and endometriosis - could you tell us more about the science behind these diseases, and how they both have and haven't affected parts of your life?
When I was in high school, I was misdiagnosed for over 4 years. From mental health, leukemia to celiac disease, etc. but it ended up being Lyme disease, and years after, I was diagnosed with endometriosis.
Lyme Disease is a tick-borne illness. It’s a highly controversial condition because many in the medical world do not deem Lyme as a chronic condition. Usual symptoms include, severe fatigue, episodes of dizziness or shortness of breath, nerve pain, arthritis, foggy memory, etc., but symptoms vary from person to person.
Endometriosis is a medical disorder in which tissue that normally lines the uterus grows outside the uterus. Usual symptoms include painful cramping, bloating, lower back and abdominal pain, but symptoms vary from person to person.
When you see me, you would not be able to tell, but from Lyme, I have severe nerve damage on the right side of my body. I cannot use my right hand to write or it spasms, I experience severe fatigue, joint pain, blurry vision, Bell’s Palsy (paralysis of one side of my face), impaired muscle movement and brain fog. From endometriosis, I have severe lower back pain and abdominal pain, bloating, and shooting hip pains. I take around 20 pills a day, see a doctor monthly, and do bi-yearly intensive treatments.
Every facet of my life has been impacted by my conditions, from my health on a day-to-day basis to how I prioritise my goals to how I work. That said, it has been the biggest blessing in my life as well because these conditions led to my life purpose.
3. What are some things that most people don't know about those who live with chronic disease?
I don’t think people realize how many people live with a chronic condition. It’s reported that 133 million people in the US alone have a chronic condition, that’s 40% of the population. Even more shocking is that more than two-thirds of all health care costs are for treating chronic diseases.
4. On the flip side, what are some of the most commonly-held misconceptions you've encountered about chronic disease?
The reason why there are such big misconceptions is that many people with chronic illnesses look able-bodied on the surface; however, many of us are not.
The running joke in some of the chronic disease circles is that we wish we had portable IV’s just so we don't have people constantly think we are faking. People don’t believe your diagnosis unless they see a physical sign.
The fact of the matter is that the majority of us don't look sick, don’t have wheelchairs, mobility aids and the likes.
5. You founded the Riley app as a "free social platform that connects patients/ people with disabilities to a community of friends who understand and care" - how did your personal experience with chronic disease shape how you created the app, and could you tell us a little bit about what the app does?
I was in high school when I got sick and I didn't know anyone around me who could relate to what I was going through. All of my friends went off to college and the people in treatment centers were three times older than me. I had little to nothing in common with them.
I was very lonely, spent hours in treatment centers, and not only did I want to meet friends that understood, I wanted tips on best doctors, treatments, and how to balance school with an illness, dating, work, and my social life. I wanted to know other people who could provide guidance.
It was nearly impossible to find them, so I founded Riley.
I was really inspired by the buzzy apps like Bumble and Tinder during that time, and thought how fun it would be to create an app to connect friends with the same medical conditions/disabilities using the swiping model.
The app uses geographic location and preferences to match users, but matches are intended to be platonic, not romantic. After you download the app, you’ll build a profile containing information such as age, location, hobbies, medical conditions, and the topics you’d like to discuss with matches.
The app is filtered by health condition, so if you choose “Lyme disease,” you’ll be matched with other Lyme-diagnosed folks in the area; if you choose a general “chronic disease” category, you’ll be matched with others experiencing chronic illness.
Users will receive eight potential connections a day, which they swipe “left” or “right” on, just like most dating apps. If there’s a mutual connection between two users, they can then message each other on the app and take their friendship from there.
6. What impact do you hope the Riley app will have on the world and/or what impact has the Riley app already made?
Riley App aspires to connect the largest minority in the world through accessible technology.
We are a global community that empowers one another through personalized connections, paving the way to a more accessible and unstigmatized future. Within our mobile app we have created an environment of sharing experiences, tips, and hardships where we don’t let our disabilities and health conditions define us.
Ultimately, we hope to change the stigma around life with a disability/health condition.
7. What are some of the greatest challenges you face as a part of your activism?
In the business/startup world, I have had very well meaning mentors advise me to keep my disability private or it will impact my ability to raise capital, get respect, etc. I made the decision to open up about my health, and though it was a risk, I am thankful I did. I have met many working professionals, founders, influencers, and executives who have told me that they themselves appreciate what I am doing, but that they could never open up about their health/disability.
That said, the biggest opportunity and challenge is to destigmatize what it means to be a disabled entrepreneur. Just because you have a disability does not mean you are not going to be an amazing business person or a great entrepreneur, and we try to show the business world that patients/people with disabilities deserve seats at the table too.
8. What are the best parts of your activism?
It’s truly the small things. I get a lot of DMs and emails from people that I've never met who thank me for speaking up about my health condition and my disability because it makes them feel less alone in this world, and it inspires them to open up about their condition.
Sometimes you wonder if you're actually making an impact, so to see that there's someone else out there that has been inspired by your story and your work means the world to me.
9. What are some things that the general public could do better right now to support people with chronic diseases in general, and/or disabilities in particular?
There's a huge knowledge gap. One billion people in the world have a disability, according to the World Bank. I just wish people realized that disabilities come in all shapes and sizes, from learning disabilities to physical disabilities to invisible disabilities. When you say the word “disability,” people assume you are getting money from the government, or look different; however, that's so far from the truth. Not everyone gets government assistance, not everyone has a mobility aid, not everyone looks a certain way. We are all different, and all beautiful in our own way. There's no shame in having a disability. The only negative part about having a disability is the stigma around it, and I hope that in our lifetime we are able to change that.
10. What would you like to see changed the most in the mindset with which people view chronic disease, and what are some things we can do to move in the direction of that change?
I wish the word “disability” wasn't filled with so much misunderstanding. Society has such a negative view on disability, and it took me a long time to accept and embrace that I have a disability, and it’s okay.
People with chronic diseases and disabilities are just like you. We all want to self-actualize, travel the world, find the love of our lives, spend time with friends, go to parties, contribute meaningfully to the world, etc.. The only difference is that some of us may be paying a lot more on medical bills than others :-D. I say the last part jokingly, but in all honesty, just because our bodies work a bit differently than able-bodied individuals, it does not mean our desires and dreams are any different than yours.
I truly believe that in order to change others' mindsets, we need to start the conversation, and have others see how similar we are at our core.