Independence: My Life In College
Independence: My Life In College
Written by Daniel Boutin.
Posted: September 4, 2024. This article was originally shared in our Summer 2024 Newsletter.
Entering my dorm as a college freshman was not the scariest part of starting college, not at all. It was super exciting setting up my dorm with my own personal touch. It was the first time I really got to make a space my own, and despite my messiness tainting that sanctity a little bit, it is as homey as it can be. Meeting my roommates and neighbors for the first time was also not the scariest part, even while knowing that these guys will replace my long-forged friendships at home, at least for the next four years.
The scariest part was the hours after my parents and relatives left, lying in bed, alone and hollow. There is no switch that flicks in your head and tells you to be an independent person when you need it to. I didn’t suddenly become an “adult” based on my location and surroundings. One might think it’s not so hard to do all the things I need to, but until they become second or even third nature, it takes conscious and pointed effort to complete all my self-care routines every day. Add to that an unfamiliar environment, with new daily routines, and where I must put attention on nurturing relationships as well as caring for my health.
I have been self-infusing three to four times a week since I was eight years old. To be honest, my hemophilia was probably the thing I was worried the least about going into my college career. I had never had much of a problem being a person with hemophilia and doing everything necessary; like doing my factor prophylactically, wearing my Medic Alert bracelet, and staying safe. Additionally, infusing was no harder going into college, barring my roommate’s nausea regarding needles.
The most difficult aspect, to my surprise, with maintaining my hemophilia in college, was about managing it alongside everything else that was going on every single day. Remembering to do your factor becomes that much harder when you need to do your laundry, but you have a paper due soon, you haven’t worked out in a day or two, and while your friends are distractingly playing Mario Kart in the other room without you. I have never really had to weigh the importance of maintaining my health as much as I do now in college, and it is sometimes hard to tell what is the “right” choice. I am getting better at it, but just like everything here, it’s a learning process.
If I had anything to say to an up and coming college student with hemophilia, it would be that it’s okay to not know everything. It’s okay to not go to every club meeting, and it’s okay to miss an infusion (well, it’s not, but don’t beat yourself up over it.) Giving yourself some slack is the hardest thing to do sometimes.
On top of that, make sure you have friends and family to support you in your journey. I was lucky that all my roommates, even the one that got nauseous, are understanding and inquisitive about my hemophilia Trust your instincts and have some fun. If you feel like you know your body, listen to what it tells you. I don’t know how many times little feelings and messages from my body have saved me from allowing a newfound microinjury from growing and worsening.
College can be scary at times but has also already brought me some of the best experiences of my life. Managing my hemophilia has proven to be a greater challenge than I had expected, but one which I learn to manage better day by day. You’ll never be perfect at anything; including your treatment. Make sure to step back and give yourself a break sometimes, and bounce back, learning from everything you do and making yourself better and safer.
Daniel has hemophilia A and is a student at Worcester Polytechnic Institute (WPI) in Worcester, MA. In the photo above, Daniel, left, is posing with his school’s mascot alongside his mother, father and brother, Alex, on campus at WPI.
NEHA's Back To School Toolkit
Returning to school can be a stressful time for all students, especially those with a bleeding disorder. This time period often involves educating new teachers about your child’s condition, working with school officials to get an IEP or 504 Plan, and the usual jitters that come with a new school year.
We are here to help you navigate this process! Click below to explore our back-to-school toolkit for resources, customizable presentations, and guides to help you secure accommodations for your child so they can learn and thrive without their bleeding disorder holding them back.