#talkingback

A kids and teens perspective on chronic life


Share Your Story!

Life with chronic pain and illness is certainly full of ups and downs. If you have a story, experience or insight that you want to share, become a TCAPP guest blogger.  By giving voice to the many issues we navigate each day, you can help to raise awareness and promote better understanding. Review the TCAPP Blog and Content Guidelines and submit your guest blog today!


Taking Chronic Illness To College

students-walking-campus-300x188.jpg

By Michaela Sullivan

College is a chance to start fresh.

For most teens, you’re going to a place where very few people know personal details about you. You start your first semester as a freshman, and you have a clean slate. For some, this is good. The mistakes made in high school don’t follow them. For some, it’s bad. Their popular status doesn't matter here. For me, it’s both.

It’s nice to come to a new school, in a new state with new people who don’t know me as the sick kid. They don’t know about my long hospital stays, excessive surgeries, or why I have all of the scars on my hand from botched IV jobs.  Unfortunately for me, my condition is still there. And as much as I have enjoyed my normalcy, I recently found myself in a situation where I had to explain my chronic challenges to my new friends. Which I found to be difficult. 

When I started college, I jumped in head first. Choosing to take all of the possible classes, signing up for a few clubs, getting a job, and opting to hike up the dreaded hill as if I had no medical problems at all. In hindsight, maybe I dove in a little too fast. But it was just so damn exciting to be completely normal, have a new identity, nobody looking at me and telling me I shouldn’t do that because I’m too fragile. 

But unfortunately, I started falling apart. I was still working hard to keep my strength up with daily physical therapy, but the amount of walking I do in a day is crazy considering I was mostly bed bound and unable to walk last year at this time.  I’m a tough one though, spending 12 hours at a time out of my room, sitting on floors and carrying heavy backpacks. I felt fine doing so too, until one day I didn’t. My eagerness finally caught up to me mid-September. My hip dislocated somehow, leading to back pain, leading to rib pain. The domino effect hit me hard, but I only let it slow me down a little bit. Then in the beginning of October, I was hit with a respiratory infection. Coughing like crazy, can be a problem when you have Ehlers Danlos, because your ribs can sublux. So getting sick for me, meant also bringing out even more of my ribs and hurting my neck and shoulders. If you know me, you know I’m stubborn. I’ll walk a mile with a dislocated hip. I won’t tell people I’m in pain unless it’s bad. So this was hard for me to have to explain why I wasn't around for a few days, because my friends here don’t about my challenges or know what to look for. 

I’ve told them some things, small details like “yeah, my joints come out a lot” or “yeah, I have the body of an 80-year old woman”, but I’m not sure they fully get it yet. They look at me like I have 6 heads when I casually mention that I need to go try and pop my shoulder back in, and don't seem to fully understand why I wouldn't want to participate in certain physical activities. But they’re starting to understand me and my troubles. They know I’ll rarely ask for help, but they make small comments like offering me a bed to lay on, telling me not to run (oops!), and saying they won’t hug me too hard because I’m fragile. It’s simple little things like this that make me feel like I’m finally developing a solid foundation here at my new home. A foundation that understands me, something I was afraid that I wouldn’t find here. It's weird because I didn't want them to know, but I guess ironically because they know, it makes living easier for me on some levels. 

So yeah, going to college is awesome. It gave me a fresh start with most people. But when bad things happen, I know my core friends will be there to catch me. So maybe my fresh start and trying to deny my chronic illness was not the be all and end-all that I thought it would be. Friends are the support that help you navigate in this life. So by letting those close to me know about my challenges, they ironically can improve my chances of succeeding in my new on-campus life. 

How much of your life with chronic illness do you share with friends?  What are the pros and cons?