7 Tips for Navigating College If You've Just Been Diagnosed With Chronic Illness

Being a student in college or university is hard. You suddenly become a person who has to organize and structure your life in a way you have never had to do before – independently. No one is choosing your courses for you, no one is going to tell you when to go to bed, eat food, study, what to wear. Even if you are living at home, your life suddenly takes on this independent quality that means you will not necessarily be home for supper every night or have an 11 p.m. curfew every night.

Given how competitive the job market and masters and doctorate programs are, you need to make sure you have things other than classes in your life. So you decide you need to have a job, maybe volunteer on weekends. But you are a young adult, so you also need to make time to socialize, go to sports events, go out to parties. You might find someone who fits your needs romantically. All of this must fit within the 24-hour day that you have.

That is until it comes crashing down and suddenly all of those plans fall around you.

When you are diagnosed with a chronic illness in your early 20s, it can feel like you have been cheated from something. Like you have been punished for wanting to have a fun and free young adulthood. Like you suddenly need to grow up. It can make you want to fall on the floor and throw a tantrum like you used to when you were little, kicking and screaming, “It’s not fair! It’s not fair!” at the top of your lungs. But once you grieve, you decide to pick your life back up. Here are some tips on how to do that in an accessible way within your college or university. I cannot promise this is the same in all places, but hopefully, there are resources there for you to access.

1. Contact your Student Access Support Office as soon as possible. 

Even if you are still in the diagnostic stage of your medical journey, find the office that helps students with disabilities and chronic illnesses get access to the classroom, get the paperwork you need filled out by your doctor and get supports as soon as you can. These can range from being allowed to record your lectures, getting your books scanned into readable files, being trained to use adaptive technology that fits your needs, to writing exams in specific low noise and distraction level conditions. They will help you in your journey and will help you deal with the professors and teachers you have who will be made aware of ways they can help you succeed. If you have an Independent Education Plan going into post-secondary education, show it to the office right away.

2. A face to a name goes a long way.

While it may feel embarrassing to speak to your professors about your chronic illness, it helps them to understand who you are and how they can help you if ever something goes wrong for you in the classroom. If you have any medication to be given to you in an emergency, it is helpful they know where to find it. You do not, and I mean do not have to tell them what your condition is – that is at your discretion and they are not allowed to ask you what you have. You need help, plain and simple.

3. Send an email to follow up on the conversation.

Professors talk to a lot of people during a day, and can forget what they have been told. So make sure to follow up with them about your conversation, including any emergency plans they might need to be aware of.

4. Take the minimum course load that you can.

There is this misconception that floats around that you need to finish your program within X number of years, or you will  be “behind.” I say – who cares! This is not a race, and health is the first priority. Then comes education – it will always be there. Some of you are covered by your parents’ health insurance that will lapse after a certain age or if you are not in classes full-time. Usually there is a minimum amount of courses to be taken to be considered full-time for a regular student, but if you are an individual with a chronic illness and a doctor’s note, usually you can take one less than that and still be considered full-time. Check with your academic regulations and see what you can do.

5. Chip away at your work.

When you have lived without a chronic condition and then become ill, you may still try to do things at the level you used to be able to do things at. Don’t. This will burn your spoons faster than you can make them and you will burn out. Instead, do a little bit at a time, with breaks. I recommend the Pomodoro method, where you study and take breaks.

6. Find your new normal while choosing your battles.

We all want to be independent in our 20s. Being free from under our family’s roof and rules is an incredible feeling – even if it comes with the burden of suddenly having to “be the adult” and do what must be done to function. But sometimes, for a person with a chronic illness, this can get to be too much, and you need to make the adult decision to get help. There is no shame in it, whether it is finding a personal assistant to help, a fabulous roommate who is willing to support you or moving back home and living with your family. Check within your heart what is best. I, for one, stopped doing all of my volunteering and working and just go to class and live at home and see friends.

7. Put yourself first but do not lose yourself along the way.

You are not defined by your illness. You are not defined by your physical or mental limitations. You are not defined by the questions, the doctors appointments, the self-doubt, the pain. You are still you, and you will achieve what you want to do, just differently. If you do not feel up to going to class, do not go. There is no shame in listening when your body screams for rest. Find your ways to practice self-care. Do not let yourself get lost in your labels. Let people who do nothing for you but drain you emotionally go – quality over quantity always. Be yourself. Decorate your mobility aid.

Love yourself, and you will get through your program.

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