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. 

Opportunity Knocked, Or Tweeted, and I Answered: My Patient 2 Patient Education Project Experience

Opportunities. Every day we are faced with opportunities; the opportunity for change, to learn, to help make a difference in this world, to make choices. Even just waking up is an opportunity in that you get the chance to do another day. Late last fall, I was given a major opportunity to represent the child-adolescent patient voice at an IBD (Inflammatory Bowel Disease) conference called "Patient 2 Patient Education Project", or P2PEP, for when that name sounds way long! Of course, I immediately grabbed for this amazing opportunity. To be the first pediatric patient that the University of Michigan IBD Program has invited to speak at this event, alongside other well known IBD advocates in the social media world, was a great honor.

Events like P2PEP are so important to our IBD community. These events are a chance for patients to come together to see that they're not alone, that their struggles are often similar to others. Like how my struggles as a 14 year old with Crohn's, can be just as similar to the 60 year old living with the disease. It's an opportunity to look around and see that you truly are not alone on your journey.

P2PEP is a chance to learn from both patients and experienced doctors. No one talks about our disease. It's almost impossible to find what some people call a "socially acceptable time" to discuss our symptoms with our friends, families, strangers in the elevator, etc. Here's how I see that conversation going:

Friend: How's it goin'?
Me: Well last night, I couldn't make it to the toilet and ended up coating the floors with vomit. As if that wasn't enough, my ostomy bag let loose and sent poop everywhere in a massive code brown incident.
Friend: *crickets*

Unfortunately, for a lot of IBD patients, these are common statements. There is no good and acceptable time to talk about what happens with our body functions. Our disease is one of silent suffering when it's not "right" to talk about it. Yet the only way we're going to educate other people, and find a cure for this disease is if we tell our story. If we shout our stories out loud, and keep shouting, awareness will grow. P2PEP gives us an opportunity to come together to give voice to what is important to us as patients, to address the things that might not always get covered in the often-too-quick medical appointments, like partnering with your medical team, how to get the most out of your doctor visits, and more about the other treatments you likely have not heard about.

The great thing about P2PEP is that it's an event for everyone regardless of age. You might not think that's a big thing, but for teens like me, I think we often feel left out of big medical conferences that aren't specific to the pediatric population. The topics discussed are ones that are actually chosen alongside the patients, to hopefully cover what is important to them and what they want to learn. And that means even us pediatric patients. For example, this year I presented with Dr. Neef on the topic of Diet, Growth and Puberty in IBD, and how those things can be particularly challenging for us as patients. Another talk focused on the idea of transitioning from Pediatric to Adult Care, something that sooner or later, us pediatric patients are going to be forced to do. Which is kind of scary when you aren't prepared for it. So P2PEP really does try to touch on it all within a few short, crazy hours, to give a quick "highlights" of what's going on in the IBD world and why this matters to patients.

I had a great time meeting other doctors, fellow health advocates, and patients, it all came to a close way too quickly, like it was just a dream. As exhausting as the day was for me physically, I left feeling inspired by others, and that is always a great feeling to part such awesome company with. It certainly was a dream of an opportunity.