12 Things I Wish I'd Known Before Going to College with a Disability or Chronic Illness
Courtesy of Self.com
Your first year of college is usually full of nervous excitement, over-the-top school spirit, and awkward getting-to-know-you games. In between eating all the free pizza your stomach can hold and staying up late to finish papers, it's easy to get swept up by the constant action and forget about taking time to care for yourself. But focusing on your needs is incredibly important as you settle into the college experience—especially if you have a disability or chronic condition.
As a disabled woman who uses a wheelchair, the start of college proved to be a crash course for me in figuring out how to balance academics and socialization with self care. I had to be my own best advocate for everything—from accessibility in classrooms and my dorm room, to carving out time to take care of my mental and physical health. While I admit to making more than my fair share of calls to my parents to ask for assistance or advice as undergrad, the one thing I really wish I’d been able to do is learn the ropes from others in the disability community who had gone through it before me.
So, I asked people with physical, psychiatric, and cognitive disabilities as well as chronic illnesses to share the advice they wish they'd heard before heading off to college. There may not be a test at the end, but I definitely recommend taking notes.
1. Start by finding a good medical specialist near your school.
If you’re going to college somewhere that’s far from home, it’s important to have a plan in place for any medical care you may need. For Sarah Blahovec, 24, who has Crohn’s disease, finding a local doctor was crucial since she was receiving regular medication infusions when she began her freshman year. She recommends researching a specialist for your chronic illness or disability before school starts. Then, schedule an appointment during your first semester to establish familiarity with your case and make connections between your new care providers and the ones back home.
“Your student health center is probably going to be limited to general medicine,” Blahovec points out, “and they may not be able to handle it if something arises with your chronic illness such as a flare or a new symptom.” In situations like that, having a nearby specialist who understands the specifics of your health can be a literal lifesaver.
2. Create a game plan for move-in day.
For students planning to live on campus, move-in day can be a total frenzy of activity, so it’s helpful to strategize and enlist any help you may need. Alaina Leary, 24, who is autistic and has Ehlers-Danlos syndrome, learned this lesson the hard way when moving in freshman year. Her dorm room was on the fourth floor of a building with no elevator and no air conditioner. After that experience, Leary knew she had to be better prepared for future move-ins. She suggests trying to pack as light as you can and scheduling to move in at the earliest possible date allowed by your college.
“Giving myself that extra time meant that I didn't have to move in and unpack all in one day, which can be pretty exhausting if you're disabled,” she says. Most importantly, moving forward, Leary made a point to only live in buildings on her campus that had elevators.
3. As soon as possible, find out what accommodations are available to you through your school's disability services office.
If you have a medically-documented disability or chronic illness, you’re eligible by law to register with your school’s disability services office to receive support services and reasonable accommodations. For instance, if you’re physically unable to write or have a disability that makes it difficult to take notes during class, you can have someone take notes for you as a reasonable accommodation. It’s important to research the accommodations you think you may need and how to go about getting these services, says Reid Caplan, 25, who is autistic and has a mental illness. He noticed many of his peers struggling and feeling overwhelmed because they didn’t figure out the logistics of receiving services in advance.
“Since disability accommodations are not retroactive for classes—meaning they don't apply to work you did before your accommodations got finalized with the disability services office—getting your accommodations set up as soon as possible can be the difference between staying on top of a class or falling behind,” he says.
4. Find out how to access your campus mental health services—before you need them.
Caring for your mental health is crucial to your overall wellbeing, but busy college students all too often neglect it. Instead of waiting until you’re in crisis to seek help, connect with your campus’ counseling center and have a plan in place to take care of yourself. Dior Vargas, 30, has anxiety and depression, and found that counseling supported her through some tough times.
“Counseling helped me talk out my issues about the huge changes in my life, like being away from my family, being a Latina attending a predominantly white institution, and finding out [a family member] was diagnosed with cancer,” Vargas says. “I needed to have a place to dedicate to myself, since I was overwhelmed with school work and my worsening mental health. After my first year in college, I made my last suicide attempt, so taking care of my mental health was crucial in me being able to survive.”
5. Learn about your local transportation options before classes are in full swing.
Knowing how transportation works near your college will come in handy for everything from running errands to nights out with friends. Do your research to find out what options are available and which are accessible for your mobility needs. Keep in mind that your options will vary depending on where you school is located. In major metropolitan areas, you may be able to call for a wheelchair accessible taxi, but in smaller college towns, you might have to figure out a bus system.
Dominick Evans, 36, who has spinal muscular atrophy and uses a wheelchair, found that public transportation near his college opened up a new world for him. By using accessible public buses and a local door-to-door accessible bus service, Evans says that he was “fully integrated and included in experiences with [his] peers that went beyond events at the university.”
6. And also get to know the best routes for getting around on your own.
Navigating a college campus can be an adventure, especially if you go to a larger school. Avoid the stress of getting lost on your way to class or the dining hall by familiarizing yourself with different pathways and routes. Sandy Ho, 29, who has osteogenesis imperfecta and uses a wheelchair, says that she isn’t the most directionally savvy person, so she took time to figure out how to get around before the school year began. For her, this included learning which elevators moved faster, which routes had the least heavy doors, where the closest accessible bathrooms were, and what pathways were easiest to use in inclement weather.
“By knowing a way around campus that worked best for me,” Ho says, “I was able to save time and better plan my days to fit in lunch or dinner with friends, meetings with professors, and various student or club activities.”
7. Personally check in with your professors early in the semester.
Although disability services offices will notify your professors that you’re registered with them and will need accommodations, it’s a good idea to talk with your professors about this directly. Tina Pinedo, 26, who has bipolar disorder, recommends emailing your professors or catching them after class to share what you’ll need from them to help you succeed. “I do not get into details or the history of my mood disorder with professors, because that is none of their business,” Tina says. “Their business is to support me in getting my work completed.”
Having a conversation with her professors proved helpful for Pinedo, because when she needed an extension on an assignment as a reasonable accommodation, making the request wasn’t difficult or embarrassing. And of course, once you’ve spoken to your professors, be sure to keep the lines of communication open.
8. Be realistic when it comes to planning your schedule.
Taking on a heavier course load or joining a bunch of clubs might seem like a good idea until you’re halfway through the semester and feeling burnt out. At one point, D’Arcee Neal, 31, who has cerebral palsy, got special permission to take 21 credit hours, even though the maximum a student was supposed to take per semester was 18. Even though he finished the semester successfully, the stress of all that work took a toll on him. “Know your limits,” Neal says. “Don’t put your health at risk.”
9. Pay attention to what your body is telling you.
Having a disability or chronic illness means that it’s especially important to take care of your body’s basic needs. This may seem obvious, but it’s all too easy to forget things like eating or going to the restroom, especially when your disability might make these things extra effort. Andrea Dalzell, 30, is paraplegic and needs to self-catheterize. She was taking a three-and-a-half hour class during which the professor only allowed for a 15-minute break to eat or use the restroom. Since it took a bit of time to use the restroom, Andrea chose to spend her breaks getting food.
Skipping the restroom wasn’t worth it, though, because it triggered autonomic dysreflexia, a high blood pressure reaction that paraplegics can experience, landing her in the hospital for three days. When she returned to school, Dalzell asked her professor for a 20-minute break instead of 15, so she could both eat and use the restroom. “Do not ignore your needs,” Dalzell says. “Go to the bathroom. Take the extra time you need.” Whether you’re out with friends or in the classroom, nothing that’s happening is important enough to endanger yourself.
10. Don’t let internalized stigma get in the way of your needs.
The vast majority of college campuses are much larger than high school campuses, which means it can take more of your energy to get around. In high school, Angel Miles, Ph.D., 36, who has spina bifida, used a manual wheelchair, but once she got to college, she found herself tired out from pushing herself everywhere. “I didn't get a power wheelchair until the end of my freshman year,” Dr. Miles says. “This made me very isolated and limited my social life on campus.”
Dr. Miles advises practicing getting around campus to determine if you’re using the right mobility aid, or to figure out if you might need to start using one. She understands that some people might worry about the stigma of using a mobility aid, but it’s much more important to do what’s best for your health and wellbeing.
11. Find your people.
Meeting awesome new people and forming a community is one of the best parts of the college experience. Wendy Lu, 25, who has a tracheostomy tube, reflected that she initially “worried about being left out of that quintessential college experience” because she lived off-campus instead of in a dorm. She decided to join a few organizations, including the Chinese student association, the school newspaper, and a leadership program. As part of the leadership program, everyone was given 20 minutes to share a story about themselves in front of the group.
Lu decided to open up about her disability—a bold move, since she’d never spoken about it so publicly. She worried about what everyone’s reaction might be, but the group embraced Wendy and her story. This was the first time Lu realized she could share who she was through storytelling, which is something she’s truly passionate about. "Don't be afraid to branch out, meet new people, and explore your passions," she says.
12. Make time for yourself.
In between all the classes and homework and hanging out and late nights, the best thing you can do for yourself is to take time to just be. Back away from the stress and your chaotic schedule, and do something that feels good. Lili Siegel, 25, who has cerebral palsy and anxiety, found that in college, her energy output ranged from full-throttle to none at all. She tried to find things to do that were somewhere in the middle of this, which meant “very consciously once a week doing something non-academic that was gentle on the body but was otherwise engaging.”
One of Siegel's favorite places to unwind was an art museum because she could either move around or sit and decompress. “From a physical perspective,” she says, “I loved the art museum because if I felt like walking, I could do that. If I wanted to stop and stare, that was also fulfilling.”
Balancing everything that freshman year will throw at you is a lot to handle—especially when you have a disability or chronic illness. Remember to prioritize your needs so that you'll be better equipped to take it all in.