Why I Became an Advocate for People With Chronic Disease

By Sneha Dave

Dreamers are given the gift to believe, and for me believing became life-changing.  

I came home from the hospital after losing my entire large intestine in a hard fight with ulcerative colitis. The next day, I gave up, because I felt that I had lost. One week later, though, I received a transformational gift. I am not sure where that gift came from, but it was a fighting spirit.

I have always had an incredibly supportive family, but I had no one who could truly relate to what I was going through, and I felt alone in battling ulcerative colitis. Not wanting others with chronic health conditions to feel alone in their fight, I decided to get into advocacy. I also became an advocate because my best friend died of osteosarcoma – a cancer that starts in the bones – and the chronic inflammatory bowel condition Crohn’s disease, and because I lost my childhood to ulcerative colitis. I started a nonprofit organization, the Crohn’s and Colitis Teen Times, became an inspirational speaker and began volunteering to support individuals with chronic conditions.

Becoming an advocate can be as easy as opening up about your illness and sharing your story to educate others with the same condition. Here are some reasons why you should be an advocate:

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Being an advocate is simple. The best way to advocate is to not be shy about your medical struggles. I used to have numerous accidents and frequently have to use the restroom, both of which are extremely difficult to talk about, especially with teenagers. In middle school, my peers did not know I had ulcerative colitis, or that in eighth grade I had a peripherally inserted central catheter, or PICC, line under my jacket. In ninth grade, I began telling people about my illness and it became easier for me to attend school, because people understood. While the sympathy I received got repetitive, increasing awareness about a disease was, in itself, very gratifying.

You will gain a great support system. When I recovered from a flare-up of ulcerative colitis, I became involved with my local chapter of the Crohn’s and Colitis Foundation of America. I met a number of people whose medical journeys were similar to mine. I was able to relate to so many people, and I was able to find out about an amazing camp for kids and teenagers with inflammatory bowel diseases called Camp Oasis. When I publicly share my story, even audience members who do not have IBD become a part of my fight. Educating people has been amazing, because I feel understood, and I hope that's created greater empathy for people with these diseases.

You will heal emotional wounds you thought you didn’t have. I have always taken my disease in stride and generally tried to remain positive. However, coming out of my first major surgery, I felt lost returning to school full-time and adjusting to mainstream society. I was emotionally wounded. Meeting people with similar stories was inspiring because I saw their accomplishments and success in spite of the road blocks created by this illness. I realized that there was a life beyond recovery and treatment.

It’s public service. Advocacy serves your own community well through education as you share information on the barriers and opportunities created by your illness. You will feed off the inspiration you give to others. I truly enjoy speaking on behalf of Riley Hospital for Children at IU Health in Indianapolis at Children’s Miracle Network Hospitals' dance marathons to raise money for the hospital that saved my life. Whether you believe in volunteerism or not, it's truly amazing the impact your experiences can have on others.  

It will change your attitude. I have always equated optimism to perspective. As I met more people while attending numerous events, I became aware of how much worse other people have had it. My best friend, who I met at an education conference, and who passed away, constantly inspired me to have an optimistic view on my own disease. Meeting these people and forming friendships became a reason for me to fight harder with my ulcerative colitis. Instead of giving up because of my disease, advocacy became a way for me to be inspired to live life fully.

You’re on your way to helping find a cure for your disease and others. When people hear your story they feel inspired to contribute to finding cures. When you share your journey with your disease, it inspires others to raise funds for good causes. I speak at many Children’s Miracle Network dance marathons to raise money for my children’s hospital, Riley Hospital. 

So How Can You Become an Advocate?

Start by contacting your local organization that advocates for your illness, and share your interest in volunteering. If you do not have one, create your own group! Engage the one or two people you may know with your same condition or health challenge.

Social media is a great way to follow people going through similar struggles, and to collect and give tips without leaving your home. It can be extremely difficult to find people in your area, as I struggled with that because many people are not completely open about their illness. Furthermore, if you find someone who is insensitive or uneducated about your medical circumstances, speak up. This may, in some instances, even include sharing your perspective with medical professionals.

Come up with a unique idea that will garner attention and in return help people. I created the Crohn’s and Colitis Teen Times, which is a nonprofit organization that provides support to not only individuals battling inflammatory bowel diseases, but all chronic illness sufferers. This is one way you can create that fundamental support system needed for almost every chronic illness. There are so many platforms for advocacy through social media, YouTube or simply educating others about your illness.

It’s my desire to see more people talk about their illness to raise awareness and create more empathy for other individuals with similar conditions. While I longed to be a “normal” teenager, I realize that my struggles led me to this great gift of advocacy.

You are never too old or young to raise your voice for not only yourself, but for many others who are in genuine need of support. Don’t forget that advocacy is a big word with small origins.