Going to College with an Autoimmune Disease

3:52 PM


I was diagnosed with Hashimoto's Thyroiditis around 2006 but was not informed of this diagnosis until last year. This disease, if you are not familiar with it, is an autoimmune disease where your immune system attacks and destroys your thyroid. I have probably had it for much, much longer (probably since I was 8 or so), and have dealt with symptoms and secondary diseases because of it, most without knowing they were related to this disease. The biggest symptoms I struggle with are constant fatigue and "brain fog," mysterious aches and pains, digestive issues, persistent weight issues, depression, anxiety, and panic attacks.

If you also suffer from a chronic illness, you understand how much of a toll it can take on your life. There is the spoonie movement which speaks about the amount of energy it takes for someone living with a chronic illness to do what other "normal" people do on the daily. I've always told people that I felt, "For some reason it takes 200% effort for me to do something that takes someone less than a hundred to do."

When I decided to go to back college, I was a little hesitant because until then I had perceived my illness as a "cannot" label, but I also felt sort of better because now I knew why I felt the way I did. The first time around, I honestly believed that I just wasn't trying hard enough, and I was somehow lazy, and perhaps just stupid in some ways. Turns out that I, and everyone who fed into these beliefs, was wrong! I've been able to turn this into a positive and now I am a straight A student.

Going back, I knew I would need to be gentle with myself in certain aspects of college life and the demands it requires. I knew there were some things I just couldn't do, and some things that for others would require personal responsibility that I just couldn't help. One of those things is my inability to remember certain things, and another is my inability to look pleasant and happy when inside I feel like a car running out of gas with two flat tires and a child that threw up in the back seat. Even if others don't understand what is going on, I owe it to myself to be more forgiving. And that's all that matters.

But I want people to know that college life with an autoimmune disease can be possible. I can't speak for other autoimmune diseases that take a much more serious toll on people, and I can't speak for all chronic illnesses. I'll let you know how I manage my disease in school, and maybe some of these tips or tricks can help you.

  1. Keep an assignment list: Last year I struggled with keeping on top of things. It is inevitable I will forget stuff. Some teachers have praised me for my organizational skills, but the truth is I am trying doubly hard just to seem normal in this area. I started keeping an assignment list this semester and so far it is INVALUABLE to my success. Without it, I forgot one assignment. Since I started using it, I've been on the ball. I use it to plan WAY ahead, and even factor in time for studying. This alleviates a lot of anxiety, and when you have anxiety issues, that's priceless.
  2. Plan my classes right: Give yourself time to rest and relax, and that includes taking stock of time needed for studying and homework. If you overload yourself, even if overloading yourself means a "normal" schedule, you won't be able to get the A you deserve 
  3. Find my studying method and stick to it: If there is a class I need to study for, my study method is to re-write the info over and over in different ways until it sticks. Copying the information word for word doesn't help, and repeating facts doesn't work. Reading the book for some reason confuses me, and Powerpoints don't do much for me either. I need to be able to utilize the information for my way of thinking. A week or two before an exam, you'll find me writing down questions and answering them over and over in my notebook until I'm certain I understand. I'll maybe break out some flash cards if I feel I need to but honestly the notebook method works best for me. If there's a specific method that works for you, find it and stick to it. I can say almost certainly that cramming the night before an exam never seems to work for anyone with a chronic illness. Either you have memory issues like me or you wake up sapped for energy because you pushed too hard the night before. Plan ahead and work studying into your schedule, and make the classes work for you, not the other way around.
  4. Respect my physical limits: if my major required some PE type classes, I would most likely pick something like swimming and yoga. Intense exercise not only knocks me out for a few days, but can also trigger inflammation. My life is a constant balance of trying to keep inflammation at bay, so this is a big deal. But if you have physical limits that leave you with questions on how to get to class or up a flight of stairs, or to complete a class that is required for your major (say you have muscle weakness in your hands but for some reason your major wants you to take ceramics), speak with the people in your disability services center at college. They may be able to work something out for you, like someone to transport you from class to class, prioritized registration, or swapping out a class for one you can manage better.
  5. Bring food with me: A big part of my disease is the lack of metabolism and also digestive issues. I haven't been formally diagnosed with celiac (still chasing that diagnosis), but I treat myself as if I do because of gluten sensitivity. I am on the Auto Immune Paleo diet, so I take food with me everywhere. I will unabashedly eat in class if I have to! I can't rely on the cafeteria or snack machines to carry something that works for me, so I plan ahead.
  6. Take advantage of the school's health services: some colleges have free health services like check ups, lab tests, and psychologists. Our campus even has dental services that can go so far as to remove wisdom teeth! I've stopped into see a counselor a few times when I felt overwhelmed about my condition or my workload. They're there for a reason, so why not?
  7. Take a day off if I have to: I've skipped a few days of class here and there. I try to limit it to one class meeting a semester per class. I don't want to miss much, but if there's a day where I just can't, I'm going to give myself a break.
  8. Let my teachers and school know: you don't have to actually do this, but if your condition is enough that you feel you may miss a lot of school, or you may have a spotty schedule, please let them know. Most schools may have a disability center that can help you with resources or advocate for you to your teachers. I've yet to let a teacher know what's up with me, but if it becomes a problem to my grade I will let them know.
  9. Utilize my academic counselor: Let them know what you are facing and work with them one on one, and frequently. Let them know your special circumstances. They may refer you to disability services, but if they know what you're up against, they may be able to help you with something you hadn't thought of.
  10. Find a support group/person on campus: I've yet to do this and I think it's something I need to do. I try to find one person in each class who can help me if I am absent. It would be nice, however, if there was a group or person to rely on for chronic illness support on campus. Maybe I should start a Chronic Illness Club or something, who knows? But having someone to talk with about the issues I face, and being able to provide support in return is something I lack.
  11. Let go of things I can't control, including other people:  Once when speaking with a professor, I suddenly felt very tired. It was after class, and the conversation was very interesting and an offshoot of class discussion. I'm one of those people who isn't very talkative unless you give me a specific topic of conversation, and this conversation was a rarity. I didn't want it to end. But I knew that if I didn't go home and go to bed, I was going to be sorry for it the next day. I brought the conversation to a close and excused myself. The professor didn't ask why or anything, which is fine. Before I knew what I was up against, I would have stuck it out and felt crappy the next morning, and resentful that someone just didn't understand what I was going through. I tell this story because when faced with chronic illness, sometimes we just want everyone to automatically understand because we're tired of explaining, making excuses, and falling short of other's expectations.
    By being gentle with ourselves, we know that none of that matters. It isn't our fault that we are this way and if others have a problem with it, oh well. Do what you can and move on. My goals are my As and keeping myself healthy. Everything else will just have to work itself out.
  12. Talk about it! This is also something I need to work on. So many times I want to talk about my issues but when it comes to personal issues I feel like people don't particularly care. I think a lack of awareness leads to this apathy. But if someone asks me why my hands shake, or why I am always cold, or why I can't eat cookies with the rest of the class on birthdays or finals day parties, I explain why. I cannot control how they react to what I have to say but I won't let that deter me from speaking my truth. Turns out that one time when I did, there were several other people in my class who have the same thyroid issues! I've written about it in student polls about weight loss and health. I've worked it into essays and gotten credit for it. Being an advocate for your own health also means speaking up and bringing awareness to your colleagues, if not for your own well-being but also for those who may be suffering in silence. Besides, your story deserves to be told.

Keeping this in mind, college has been, for the most part, very positive. There are times where I pushed myself a little too far. I had almost had an anxiety attack during a final presentation, and it was visible. The teacher commented on it and I was a little embarrassed. I decided afterward that I didn't care. I got my grade, and I implemented strategies to avoid that situation. That didn't mean I was going to stop taking classes that required presentations. It meant that now I am going to plan ahead and I am not going to take on too many responsibilities.

So far, going back to college has been a challenge but also a relief. It's a challenge because now I can focus on stuff I would have avoided before because I knew I couldn't do it but didn't know why. Now, it is a relief because I see that when I take care of myself, I am able to achieve far more than if I ignored my own needs.

You can do this!

Please share any stories you have about chronic illness and autoimmune disease as a student, including coping strategies and tips for other students. The more awareness, the better. We all deserve education, despite diseases we have no power over. Tell me your success stories, tell me about your less than successful stories. Is there something I've written that you disagree with? <3

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