JRA

Juvenile Arthritis Awareness Month: Part 2- Being a college student with JRA

Transitioning to college can be challenging enough. However, having JRA during college adds many more challenges. There are many factors to consider when choosing the right college to attend such as is it a small campus or large campus with shuttles, is there a responsive disability center, are the dorms and buildings accessible and is it close to doctors and health services.

My friends carrying me while
simultaneously tying my shoes!
I attended Boston University for many of these reasons. It was a flat campus, close to all of my doctors and had very accessible buildings. Although, BU had a large campus there were many shuttles and public transportation options to help me maneuver the campus. Despite all of this, college can still be challenging. As a result of the stress of living in a new environment, not-stellar eating habits, late nights studying and much, much more walking, I battled continuous flares, 3 surgeries and constant treatment changes during college. 
However, I made it through with not one, but two degrees (a BS and a MS in occupational therapy) and I learned some tips along the way.
  1. Pick the right college for you: As I mentioned BU was a huge campus, however, it worked for me because it had public transportation as well as school transportation options to help with my mobility. Some people may opt for a smaller campus where you only have one building to walk to. 
  2. Make the connection with the school’s disability service right away: BU had a lot of disability services to offer, but there were lots of steps to take to get anything done and it was often frustrating and time consuming. I learned how to advocate for myself better during this period. A smaller school may not have a disability office but you may be able to talk directly with your professors about accommodations. 
  3. PACE yourself: This was one of the most important aspects of managing my JRA at college but also one of the hardest things to do. As a college student, you don’t want to miss out on any experience but I often end up paying for busy weekends, with days not wanting to leave my bed.
  4. Adapt and Accommodate: If you are like me and can’t pace yourself, learn ways to still enjoy all of your college experiences but with accommodations. For example, my friends would often walk over 2 miles to attend parties (in order to save precious subway money), however I knew if I spent my energy walking, I’d have no energy left to party. I frequently took the subway, cabs or school shuttles to meet them in order to save my energy for the night. I also used a wheelchair (while on spring break in Disney) because I knew there was no way I would be able to keep up and saved my energy to enjoy my vacation.
    In Disney on spring break, a wheelchair
    was necessary to pace myself 
  5. Don’t be afraid to say no: By the time I was an upperclassman, I learned that I would rather have friends to my apartment (even if I had to bribe them with wine and food), so I could have a comfortable place to sit all night long but still be with my friends.
  6. Be open and honest to your friends: My friends were wonderful and tried to accommodate and help me as much as possible.  They would even carry me if I was desperate! I was always honest to them when I was really hurting and they learned a lot about JRA as well.
  7. Don’t be afraid to ask for help: One of the best ways I relieved stress and decreased my joint pain was to take baths. However, wanting to take a bath in my apartment meant cleaning the tub. After a long day of classes, that was the last thing I had the energy for. Luckily, I had an amazing roommate and friend and on one particularly achy day, I asked her to clean the tub for me and she did! 
  8. Sometimes it sucks: My last point is somewhat hard to read, however, there were definitely nights when I felt left out, was flaring badly in pain, lonely or just felt bummed that I had JRA while in college. It’s ok to have nights where you binge watch Sex and The City (eek, I feel old now) and some of your friends may even enjoy the excuse to stay in on a Friday night and join you. However, all experiences (whether they are good or bad) help define who you are as a person and who you become. 
College with JRA can be hard, but it doesn’t have to be impossible. I loved my college experience, even though my it was one of the hardest times to manage my JRA. I learned a lot about myself as a person, I learned how to manage my JRA better and I learned how to totally disregard everything and just be a college student. JRA be damned! Whatever your experience ends up being, make sure to make the most of it.

My all time favorite Patriot player, Teddy Bruschi, was doing a
book signing, 1 week after I had knee surgery. The line was over an hour
long, but I brought my crutches to wait to meet him! 
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