UPopolis - Social Media for Sick Kids

Can you imagine being a child and living with chronic health problems? How many areas of your daily life do you think are effected? What are some of the biggest challenges you see for kids like me?

I've been living with severe, refractory Crohn's Disease for almost 6 years now, having been diagnosed when I was 8. That first year alone following my diagnosis, I missed just under 80 days at a brand new school due to repeat hospitalizations, complications, and surgeries. As my classmates were all making new friends, it was a real challenge when I wasn't there to have that opportunity. Being "different" from all of my classmates, and the majority of the school I'm sure, only made that feeling of being alone, stronger.

Enter UPopolis. Oh you've never heard of this program? Let me tell you about it! UPopolis is a safe social media site targeted to pre-teens and teens in the health community. Patients are encouraged to create their own page, and then start connecting to others. In addition to the patient pages, patients can play games, and have the opportunity to learn more about health conditions through the health-specific pages. It's a place for building knowledge and support, which is something we all need in order to be able to successfully cope with our illness.

UPopolis to me is important because it's a way to connect. Due to my health, I haven't been able to build a lot of friendships in my home area. As I can no longer go to school, there are even fewer social opportunities. When I first started out at the hospital, I would meet different patients at the common areas, like the play lounges, but we often parted ways after a few days and would only randomly run into each other again. UPopolis gives us that ability to maintain the friendships that we do make while we are in-patients.

Sometimes, the severity of our disease or the type of disease we have, can make us feel pretty alone. For example, when I had my "permanent" feeding tube (GTube) put in, I broke out in a widespread rash that we eventually learned was an allergy to silicone. Silicone reactions are so rare that they're virtually unheard of, yet when I touch anything silicone, I blister. Not a lot of my more healthy friends would be able to understand the experience. Yet in the health community, even if someone hasn't experienced the same situation, they can understand the experience. UPopolis is a great way to be able to share our experiences with people who really do "get it". 

UPopolis is a great way to gain knowledge. The first step to coping with any disease is knowledge. When you don't understand what is going on with your body, what the different treatments might be like, etc., it can seem scary and overwhelming. Learning about the condition helps to take those fears away. It also allows you to build a partnership between you and your health team, so that you can actively participate in your healthcare planning. There is so much information on different conditions on UPopolis making it a great place to start to learn more.

Last fall I was asked to be a UPal, a type of mentor for other patients in the UPopolis community. It's such an honor to be asked to be in this role. To have the potential to help someone else who is struggling, is a huge SUPER-POWER! I've had so many health experiences, being involved with so many different specialties at the hospital, that I can now share with others to help them through similar situations. I have the ability to make a difference, and in doing just that, it helps me to feel better. It reminds me that despite my current limitations, I can still change this world of ours for the better.