How old are you?

I just turned 20 and am a junior in college.

Will you tell us what it's like living with a chronic condition?

It can often feel isolating to live with a chronic condition. It's difficult for others to understand or relate to what I'm going through, especially since many chronic conditions are invisible to outsiders. Life with a chronic condition is also full of unpredictability. I might feel great one day, but I could be in the emergency room the next. However, it is also empowering because I have learned to appreciate the moments when I feel great! I have become more empathetic to others because you never know what they are going through.

What has living with ulcerative colitis taught you?

Living with ulcerative colitis has taught me that there are no excuses and nothing is impossible. Just five years ago, I was so incredibly sick that I could barely walk up the stairs by myself. This past December, I climbed Mount Kilimanjaro, the highest peak in Africa. Overcoming the challenges of my disease has taught me that I can do anything I set my mind to.

What inspired you to start the Health Advocacy Summit?

For a few years, I felt alone because I could barely attend school due to my condition. From sixth grade through the middle of high school, I only went to school for a couple of hours each day. Sometimes, I would miss days or weeks of school due to doctors' appointments or because I needed to stay in the hospital. My goal in creating the Summit is to make sure that people living with chronic conditions do not feel isolated.

Will you tell us a little bit about the Summit?

The Health Advocacy Summit is a daylong, free advocacy event dedicated to empowering young adults (high school and college students) with chronic conditions. This first-of-its-kind event focuses on the social, emotional, and professional needs of students living with chronic conditions. The first Summit was in October 2017 in Indiana. Now, we're expanding to Texas, Arizona, North Carolina, and (most likely) North Dakota and New York.

At the first Summit in Indiana, attendees learned about their student rights, how they could advocate for different health-related policies, how they could overcome some of the emotional barriers of living with a chronic condition, and more.

What do you hope attendees will learn from the Summit?

I hope that attendees will know that they are not alone in living with their conditions. I want to give them tools to live their best lives. I also hope that attendees will gain a lifelong network of people they can turn to for support.

When did you begin advocating for people with chronic conditions?

In high school! That's when I started my first nonprofit organization, and I still lead it. It's called the Crohn's and Colitis Young Adults Network (CCYAN). CCYAN is an online platform that connects young adults with inflammatory bowel diseases. When I created CCYAN, there was not a single organization for young adults with inflammatory bowel diseases. Today, over 12,000 people around the world connect through CCYAN.

What advice do you have for other teens living with chronic conditions and disabilities?

Do not let living with a chronic condition or disability keep you from achieving your goals. People around you might say, "Take it easy." While you should place a priority on your health, it's also important to define your own abilities. You can do anything you put your mind to!

How can girls support other teens living with disabilities or chronic conditions?

Too often, I think we forget disabilities affect all different types of people, and we can do a better job of acknowledging and supporting this population. I believe that those living with disabilities and their allies can use their voices to lift the disability advocacy platform. For example, you can help make sure that the policies of your school and after-school activities give people living with disabilities the same opportunities as those who aren't living with disabilities.

Most importantly, if someone you know is living with a disability or chronic condition, be there to support them. Let them share their challenges, as many people living with disabilities or chronic conditions feel isolated. However, it is always important to ask the person if they would like to share, as some people do not feel comfortable sharing these personal details.

Is there anything else you'd like to share?

Women and girls with chronic illnesses and disabilities face unique challenges. It is important to educate yourself about these challenges and disabilities.

If you have any questions or would like more information about chronic illness and disability advocacy, you can connect with me on Instagram and Twitter.

Learn about different types of illnesses and disabilities, hear from girls living with different health conditions, and discover how to find support if you're living with an illness or disability.

Content last reviewed July 06, 2018
Page last updated July 06, 2018

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