A Piece of Me: How I Explained My Rare Disease to Friends (and Tips for How You Can Too!)

Alyssa Zeigler

Over the years, my perspective on having Gardner’s Syndrome has changed many times. For most of my life, I knew that there was a 50% chance that I would inherit this disease. That didn’t make my diagnosis any easier though.

A couple weeks after I was diagnosed, I started my freshman year of high school. At the time, I only chose to tell my closest friends about my disease. At first it was hard to explain it. I didn’t want people to know that I had nearly a 100% chance of having colon cancer someday. When I explained my disease to my friends, I told them that I had polyps in my colon which were like “weeds in a garden.”

For most of high school, only some people knew that I had Gardner’s. I was afraid that I would be made fun of for having to get colonoscopies every summer. I also didn’t want people to feel bad for me.

When I arrived at college four years ago, something about me had changed. When I started college, I hardly knew anyone and I was meeting new people every week. When I got to know new friends, it felt weird not telling them about this “secret.” I started to believe that people would not understand me unless they knew I had Gardner’s. So I started telling people.

For the most part, I wasn’t really nervous to tell others. The only time I really got nervous was when I told my roommates for the first time. I thought it would be a lot different telling someone I would see everyday about my disease. But little did I know, they became some of my biggest supporters and closest friends. Not only were they there for me whenever I was having a bad day, they also supported my goals of living a healthier life to prevent my polyps from returning.

When I started my senior year of college, I started to share my story in a bigger way. It started with a psychology class presentation. Then one thing led to another, and I started a blog. After blog posts, I decided to write a memoir about my experiences. Sharing my story has helped me see my challenges from another perspective and I finally feel like I can accept that my disease will always be a part of my life. I am more than just a disease. But in hiding it, I was really hiding who I am. Nine years ago, I would have never imagined writing a memoir about my experiences- or even writing this blog post. I’m hoping to make it eight years of remission this summer!

Now that I’ve told my story, its your turn. Here are some tips for telling friends about your rare disease:

• Being Judged: Don’t be afraid to talk about it just because you fear being judged. Giving friends more information, instead of less, will prevent instances of confusion where friends might judge you because they don’t understand what’s happening. Remember that you are much more than just your disease. People can learn to separate your disease from your personality. 
• Give it Time: You don’t want to open every conversation with a shock. Let new friends get to know you for a while before you tell them you have a rare disease. You’ll know when the moment is right to break the news.
• Finding the Right Words: Before you tell your friends, come up with a creative way to explain your disease to them: medical terms can be confusing. You might want to come up with a metaphor, and talk about how your disease affects your daily life.
• Curiousity is Okay: If you choose to tell others about your disease, allow them to ask questions. Chances are, your friends have never heard of your disease before and want to know more about how it has changed your life. This is a great opportunity to educate others in a moment where they’re receptive to learning.
• Just Be Yourself: You are not your disease, so let your personality shine.

Alyssa Zeigler is a recent college graduate from Western Washington University. She has Gardner’s Syndrome and comes from a family that has a history of hereditary colon cancer diseases. She has a degree in psychology and hopes to help people who are living with rare diseases. She is currently living in Bellingham, where she works as a living skills specialist. In her free time, she likes photography, knitting, spending time with friends and writing. Alyssa is the author of the memoir, The Waves of Life: Going Against the Tide and the blog Learning to Live by Defying the Odds (https://alyzee17.blogspot.com/).