Carolanne is a new writer here at the Pact Blog. She is 25 years old. She lives with gastroparesis, dysautonomia, polycycstic ovarian syndrome, anxiety, panic disorder, body dysmorphia, depression, bile reflux, chronic fatigue syndrome, and suspected of having EDS. She is an animal activist, a gypsy soul, independent thinker, a big sister, an unconditional lover, a headstrong woman and a chronic illness warrior. She also contributes to the Mighty, and writes a personal blog, A Heart for Humanity
College With a Chronic Illness
by Carolanne Monteleone
I spent two years at the local community college and then transferred to a school I wasn’t even sure I was smart enough to get into. It became my dream college; the University of Pittsburgh. The opportunities for me to pursue my passions were endless and the city only enhanced my ability to take full advantage of everything I could possibly balance on my plate.
But my college experience didn’t quite go as expected. The week before finals of my junior year, I became sick. Overnight I went from being a double major with the internship of a lifetime to dragging myself to doctor after doctor praying for some magical cure. But that cure never came. While the doctors played the guessing game with my health, I powered through finals and drove myself five hours home and straight to the hospital. My body officially just shut down and in that moment, I had never felt so desperate. I had plans to go back to my apartment that summer to start my internship at the American Civil Liberties Union, something I only dreamt I’d have the opportunity to do. Unfortunately, the opportunity would forever remain just that: a dream.
I had medical test after medical test and finally after many months, I had an answer. It was an answer I never expected to receive. My doctor told me I had gastroparesis. It wasn’t the diagnosis that threw a wrench in my plans; it’s what I found out after. I’ll never forget that moment. I was sitting in the passenger side of my mom’s minivan, reading my after visit summary from the GI doctor. My eyes skimmed the pages and my head spun as I took in the vast amount of information all stapled together. Then I saw it: gastroparesis cannot be cured. I looked at my mom in disbelief. How could what I have not have a cure? You mean to tell me this will never go away? That I’ll never eat another meal again? I realized my dream internship and senior year of college out in Pittsburgh were out of the question. I could barely keep down Gatorade and bits of white rice let alone take on a full course load five hours away from my support network.
The grieving process was rough and the news only got worse from there. When my local GI was no longer able to help me, I went to a motility specialist at Johns Hopkins where we eventually decided I needed a GJ feeding tube. My doctor confirmed what all my other doctors had been telling me and my worst fear- I would never graduate from college. I couldn’t wrap my mind around it. In fact, I wouldn’t let myself wrap my head around it. I was insistent that I would graduate college, no matter how long it took.
I found a local school about 30 minutes away from my home that had a program for adults going back to school or students with extenuating circumstances. My parents were willing to help me commute and the college was willing to work with my chronic illness. It was the perfect fit. Just three days after my surgery for my feeding tube, I attempted to attend my senior year of college at DeSales University. When complications arose and I needed a second surgery just a few short weeks later, I was forced to drop out.
The blow almost hurt as hard as having to leave Pitt. I started to believe that maybe my doctors were right. And then I had an “ah-ha” moment…it didn’t have to be all or nothing. I could start out slow and steady. So I signed up the following semester for two online classes. Over the next few semesters, I took as many classes as I could online and then the day came to try and go back in person. I was so nervous, but I only signed up for two night classes; something I thought I’d be able to handle.
After a successful semester in person, I was in the home stretch: my final two semesters. This time I took a full course load of senior level classes and as much as I was excited, I was super scared. I made a point to talk with my professors and help them understand my illness so they could accommodate me in small ways (like excusing me for more than the allowed 4 missed classes and letting me make up exams and work when I was sick).
Before I knew it, the year was coming to an end and reality was starting to set in. I did it. I did what my doctors said I’d never be able to do. I was about to walk across that stage with all my loved ones watching as I received my degree with high honors. It wasn’t easy and there were many times I spent time in the hospital writing a paper or completing course work, but in the end, I did it.
If I did, so can you. Don’t let anyone stand in the way of your dreams. Here are the 10 most important tips I have for anyone who’s chronically ill and wants to go to college:
- Talk to your professors during syllabus week
Let them know you have a chronic illness and explain how it might affect your ability to perform well in their class. Ask up front for certain things you may need, like extra days missed or more time work on projects. Most professors won’t have a problem working with you.
- Make sure to make accommodations via the disability office ahead of time
Every college has a disability office. Your doctor should be able to give you documentation allowing you access to a great mediating tool between you and your professors. The disability office can help facilitate the above conversation (tip number 1) if you feel uncomfortable approaching you professor alone and can even suggest what accommodations would suit you best.
- Don’t be afraid to ask for help
This is the one thing I struggled with the most. But if you’re having difficulty, speak up. Ask for help from a classmate, your professor, a parent, or friend. Whether it’s strictly school related or simply health related, let your support network give you a helping hand so you don’t find yourself overwhelmed.
- Find a buddy in each class in case you have to miss school
It’s hard playing catch up, so make a friend in each of your classes that you feel comfortable asking for notes from. This makes life a lot easier and a lot less stressful when you’re afraid you won’t be able to pick up where the class left off last time when you weren’t in attendance.
- Work ahead of time if you’re feeling well
Your professors should give you a syllabus the first week of classes. Use this outline to work ahead when possible so if an unexpected hospital trip or flare shows up, you’re prepared.
- Use a recording device or note taker to make things easier on yourself
Most professors will allow recordings of their lectures if you ask and some disability offices offer a designated note taker for each of your classes. I had a note taker for a semester at DeSales and it was extremely helpful. It allowed me to listen and focus rather than scramble to write things down.
- Schedule breaks in between classes to give your body and mind some down time
If you have the opportunity to give yourself an hour or so between classes, do it. It gives you a little time to relax before gearing for the next class. It allows gives you time to work on classwork or study last minute.
- Try to take classes on Mondays, Wednesdays and Fridays instead of all 5 five weekdays
This tip is especially helpful if you’re commuting. If you only have to get yourself out of bed 3 days instead of 5, it’s a lot easier to push yourself to go even when you’re not feeling the best. It also gives you days in between to rest up.
- Join a club or activity to get more of an authentic college experience
Afraid you won’t feel like a “normal” college student? Join a club on campus and get involved. It’s a great way to make friends with similar interests while also being low commitment.
- Choose a college close to home whether you plan to commute or live on campus
For me, this was the most important factor when choosing which school to go to after leaving Pitt (which was 5 hours away). The closer you are to your support network and doctors the better! You’ll be glad you’re close to home when you aren’t feeling well and need a little extra help.
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