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College and Chronic Illness: Your First Two Weeks on Campus

The first few weeks on campus with a new chronic illness (or new school) can be seriously daunting. It’s hard to keep track of all the new places, people, and rules, so here’s a quick cheat sheet to your first few weeks on campus and the most important things to accomplish:

Week 1 Priorities:

  • Get to know your surroundings.If you have a car, use it and drive around the campus. Take your schedule and drive past the buildings you have classes in. Get a feel for the distance you will have to travel and the amount of energy it will take you (and therefore how much time to give yourself to get to each class).

                  1. Things to learn the location of: your disability center, health
                  clinic, pharmacy (on campus or off), bus stops if you are using
                  provided transportation, your class buildings, elevators, and ramps if 
                  you’re using a wheelchair or avoiding stairs, your advisor’s
                  office/building, dining halls/options.
 

  • Make an appointment ASAP with your disability student center. If you have the option, do this before the semester even starts. Appointments can be hard to get last minute when everyone is trying to get one. Make one ahead of time.The point of meeting with your disability union is to discuss how the university can accommodate you during your time on campus. The people here will be the ones working to help you deal with professors, labs, and any difficulties that come up while you’re enrolled.

               - Make a list of questions you might have and accommodations you may need. Consider things like extended deadlines for assignments, no absence limits, transportation, note takers, books on tape, getting permission to use a computer in classes where professors forbid it, getting permission to leave class mid-lecture or eat where prohibited, getting access to a certain type of seating, etc.

             - Print out any necessary paperwork and have it completed  prior to your appointment (or request it to be scanned, mailed, or faxed when you call to make your appointment). This paperwork usually requires forms filled out by your doctor(s) so prepare for that accordingly.
     
  • See your advisor. Go over your schedule, introduce yourself, discuss your concerns/disability/limitations with the advisor. This is someone you want to establish contact and communicate with frequently throughout the next however many years at your school. Take note of names and write down contact information for any people that you meet with.
     
  •  Textbooks. Those damn heavy things always pose a problem. Lugging textbooks from the bookstore to your dorm is just not practical for most people, let alone those of us with minimal spoons and painful bodies. If your parents/loved ones are bringing you to school and moving you in, ask them to accompany you to the store before they leave to help you with your books. If you have a car, use it. Buses are another option, but don’t struggle across campus with 8 heavy texts in your hands. It is not worth the spoons. A tip for all students: learn your store’s return/rental/book policies and save all receipts. It will become pretty obvious whether or not you really need a book for a class, or if your professor is just trying to make some money because they wrote the text.
     
  • Get your disability parking in order. On many campuses, the disabled parking spots are closed off in faculty lots and seemingly inaccessible to students. What they don’t tell you is that you can gain access to these spots. Go to your parking/transportation office on campus and get any necessary decals you need in order to use handicapped spots on campus. 
     

Week 2 Priorities:

  • Set boundaries with your roommate(s). This goes for roommates regardless of whether or not you have a chronic disease, but it’s especially important for those of us with medical issues. By week two, hopefully you’re getting a feel for the kind of person you are sharing your space with. It’s time to lay down some ground rules. If you are immunocompromised, discuss germs and how imperative it is that if your roommate is sick, they need to keep clean and keep their distance. If you have refrigeration medicine/syringes in a shared fridge, discuss it. If you are light sensitive/noise/chemical sensitive or have odd sleeping/bathroom habits related to your chronic illness, discuss it. Be honest and open about what you need in your space and ask them what they need from you as well. If you struggle with certain tasks (mopping floors, etc) come up with a way to divide the cleaning of your space that works for you (physically) and your roommate. This is also a good time to have a discussion (if you feel comfortable) about your disease/disability and what they might witness or see so that they understand.

     
  • Meet with your professors. By now, hopefully you are beginning to settle into your class routine. Now is the time to take your disability paperwork/letter from your Student Disability Union to your professors, meet with them, and make an impression. You do not have to disclose the nature of your condition(s), but discuss at length with them the accommodations and come to an understanding. Read up here on professor etiquette before you go. The goal is to get to know them and for you to be a familiar face, not a number on a roster sheet of 200+ students.

  • Consider meeting with your on-campus health clinic to discuss what to do in the event you need medical treatment. Find out what they can provide you with, if they are familiar with your condition(s), and what resources/referrals they can direct you towards. Also consider any physical therapy you’ll need and find out if your university offers it.
     
  • Find local specialists to continue your care. Finding a specialist to follow you (whether that be a rheumatologist, endocrinologist, etc) while you’re away at school is important. That doesn’t mean writing off your doctor back home, but having two physicians who work together on your care. You need a physician that knows your case and history in the event of an urgent medical event too complex for the on-campus health clinic. Research ahead of time and give their office a call, discuss what you’re looking for and schedule and appointment to see if the doctor is right for you. Think of it as an interview. More on how to find Dr. Right here and 15 tips for seeing a new specialist

For those of you just heading off to school as freshmen, take a deep breath and cross something off your to-do list each day— you’re going to be just fine.


                                     

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  • 9 months ago
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Avatar A 21 year old student and ePatient advocate working to help others navigate through life with chronic pain, chronic disease, and disability. Sharing resources, advice, helping others find a voice and become empowered patient advocates. Raising awareness for Autoimmune Arthritis and Autoinflamatory diseases.

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