Surviving and thriving in college with a chronic illness

Going to college is a big transition in anyone’s life. It’s a period of changing, gaining independence, and growing up. When you are living with a serious chronic illness, and you experience this transition, it can be more difficult to adjust to and cope with than the average person.

A little over a year ago, I was starting my freshman year of college, and this transition was one hell of a (miserable) trying time. My senior year of high school had pretty much been spent on home instruction, and I was so dependent on my parents for pretty much everything. Needless to say, the day I moved in, I was scared to death, and cried so much leaving my family that I think there are still eyeliner marks on my mom’s shirt.

My freshman year turned out to be one of the best years of my life, and despite the fact that I was facing some major obstacles which my peers weren’t dealing with, I had 8 months of amazing memories made with amazing people.

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I’m hoping this post will help anyone who has a chronic illness and is making, or going to be making, the adjustment to college. These are some things which I wish someone had told me when I myself started my freshman year 12 months ago.

Register with your office of disabilities / disability support services / differing abilities.

I can’t stress the importance of being registered with your college’s office enough. They will be your liaison between professors and you, and any accommodations you need will be made through them. Additionally, they will work on any housing accommodations you may need. I met with the office even before my first semester started, just to outline and plan for any accommodations I would need.

Openly communicate with your professors

Every school varies to some degree in how it works, but generally, every DSS office will give you a general letter for your professors just stating that you are registered with the office. It doesn’t indicate what kind of disability you have, so what you want to share is up to you. In my last year of college experience, I’ve learned that the best thing to do is be as open with your professors as possible. First semester of freshman year, I basically handed my professors my accommodation letter, and didn’t really elaborate on my condition or what I really needed from them. This came back to bite me in the butt second semester of last year when my severe infection started. Because I wasn’t open with them, they weren’t knowledgable to my situation, and therefore much less willing to accommodate me. This semester I have made sure to give each of my professors an up to date summary of what my disease is, the fact that I’m immunosuppressed, and still dealing with a major infection. They were all extremely receptive, understanding, and willing to work with me and accommodate me with anything I may need. Although I think I’m a generally private person, forcing myself out of my comfort zone has proved to be worthwhile in this situation.

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What I say to professors (Jk, this is a joke, I don’t say this)

Be in charge of your treatment.

Being in college means that you don’t have the comfort of your mom reminding you to take your medications every day (it may feel like nagging, but trust me, it’s something you take for granted.) If you take oral medications, and supplements, the best thing to do is to keep a pill box or something which has your medications organized for the week. Set an alarm on your phone if you suck at remembering things (me). I also have shot days, when I do my methotrexate injections. Additionally, I have to take the train every month to my infusion center to get my IV treatments. So basically, I’ve learned that being compliant and on top of your treatment plan is in your hands, and therefore, how your disease is managed and controlled is partially up to you and how responsible you are.

my cute pill box that matches my room

Establish normalcy and a healthy lifestyle

This one has probably been the most difficult one for me, and I’m still working on it. Anyone who knows me knows that I love my sleep, so establishing a normal sleeping cycle has been so tough, especially being on and off steroids, which can really mess your sleep up. When your body is well rested, it does its job the best, and can focus all of it is energies on keeping your illness under control. It seems really hard to follow this because in college, people sleep really late, but if you have a set time that you tell yourself you want to sleep at every night, and put your mind to it, you can establish a normal sleeping schedule. This also means avoiding things like all-nighters, which totally screw your body up, and can lower an already susceptible immune system. I pulled one all-nighter last year, and it messed me up for at least a week. Don’t feel guilty for sleeping a lot, when everyone else around you can manage with five or six hours of sleep a night. You are not everyone.

Best college motto

Best college motto

Sleep is so good

Sleep is so good

Another part of a healthy lifestyle is making nutritional choices. Healthy eating and college generally seem to be two things that don’t seem to go together, but it’s really important to eat well to nourish your body, and give it the nutrients to be as healthy as possible and not send you into a flare of your disease. Eating healthier is easier than you think, and doesn’t have to start off with the dramatic cleanses you hear about on TV, but you can start off with making simple choices that add up in the end. Eat a salad before your meal. Switch the sodas for water. Switch one dessert per day with fruit. Choose whole wheat pasta instead of white. Just these small changes can have healthy results.

Salad is good

Salad is good

Last but not least, exercising is so important. It’s good for everyone, but if you’re living with a chronic disease, its benefits may be even greater. A safe level of exercise will depend on your
health status and the stage of your disease, and it’s important to check with your doctor what you can and can’t do.  Everyone around you may be running, or doing crazy weight lifting, but it’s okay to do things at your own pace, and level of comfort. Most likely, if you’re in college, you have “free” access to your school’s gym (free=included in the thousands of dollars of debt), so it’s definitely something to take advantage of. Also, your college probably offers some type of fitness class like Zumba, or yoga, and if you’re physically able to, it’s also something to take advantage of.

You don’t have to do this

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Make (semi) good decisions

This sounds like something a grandma would say, but it is also naive to assume that just because you’re chronically ill, you will go to college and steer clear of alcohol and other substances like it’s the plague. It’s college…and people try new things. When you have a chronic illness, experimenting with “new things” may be as equally appealing as it is for a normal person, but it may not be as equally safe to do health-wise. Depending on your medications, you may be limited in what substances you can ingest. For example, I am on methotrexate, a chemotherapy drug which can cause liver damage itself, so consuming these certain substances in great amounts (e.g what a majority of college students do) can be extremely detrimental to my health. It’s an important conversation to have with your doctor (I promise you, they won’t judge you), and it’s important to also have a strong understanding of how your medications interact with drugs and alcohol. There are some medications which are absolute no-no’s with alcohol, like antibiotics and painkillers, so just be smart. And, after all, if you’re under 21, this obviouslyyyy doesn’t apply to you because underage drinking is something that never occurs…ever.

Advice: don’t do this

Know when to get help, and don’t be afraid to ask for it. Be in charge of your wellbeing, and be your own advocate.

For most college students a cold is a cold (where you regress to being 5 years old, wish you had your mom with you, complain incessantly and then get better in a few days), but when you have a chronic illness where your immune system is compromised, these colds usually don’t remain as simply colds. This means going to health services from when you are beginning to feel sick, and knowing when a sniffle is more than just a sniffle. If your disease is flaring, and if you feel like you are not doing well, reach out, and ask for help. Reach out to your office of disabilities support services, reach out to your professors, reach out to your advisors. There are some points where you are simply too sick to be in school, and you either need to head home or be hospitalized, and it is up to you to recognize what the signs are for this. Leaving in the middle of the semester isn’t ideal, but if you are close to being hospitalized, or are too ill to attend class regularly, you need to focus on getting better. I almost had to take this semester off, and I have come to terms with the fact that it’s always a possibility in the future given how unpredictable my health can be. It might take longer to finish your degree, but the time it takes doesn’t matter, your wellbeing does.

Don’t wait for it to get to this

Choose your friends wisely

When you go to college, everyone wants to make friends. It’s college, you’re alone for the first time in your life, so it’s natural to want to befriend everyone you come into contact with. Although it’s natural, I would advise my past self against it. When dealing with chronic illness, it’s so important to have friends who are supportive, caring, and understanding of what you’re dealing with. Unfortunately, not everyone possesses these qualities. There are some people who are not as kind, who act like your illness is something which is your fault, and are just simply not encouraging. These people simply aren’t worth it, and if someone has a problem with the fact that you have a serious disease, the “problem” is with them, not you. Being surrounded by peers who are there for your tough times is important in any situation, but in the situation of chronic illness, it’s vital to have the best support system possible.

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The type of friends you should make

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Seriously, make good friends

Last but not least, but remember that you are your top priority

As important as it is to get involved, and do well academically, you come first. As tempting as it is to make stupid decisions, pull all-nighters to study for exams, and follow the unhealthy behaviors of your peers, all of these can be destructive to your physical wellbeing. College is not enjoyable when you’re sick, and you can’t accomplish much academically, socially, or even extra curricular-ly if you are not at your healthiest potential. So, take care of yourself, and I promise, college will be one of the most enjoyable periods of time in your life. There will be challenges, but life brings ups and downs, the downs are just another bump in the road which make you appreciate the ups more. And trust me, there are plenty of ups, and they will always outweigh the downs.




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