College can cause a great deal of stress for students, and when those students also face the additional stress of being chronically ill, the mixture can feel quite overwhelming. Being a chronically ill student is a physically demanding, full-time commitment. It is exhausting, painful, and hopefully rewarding.
My College Experience
Since becoming a college student, my time consists of being at school, doing homework, being at the doctors, or debilitated in pain. I am very appreciative of the fact that my parents recognize me being a good student as my job and economically support me. Since every single one of my functioning hours is spent doing homework, my full-time job truly is going to school and surviving. Even when the severity of my head pain reaches the highest intensity and completely inhibits my ability to think and function, I keep trying. I will read the 80 assigned pages, sentence by sentence, having to read each word over and over to get it in my brain. I will spend five, ten minutes writing the “perfect” sentence just because I have trouble formulating one that sounds somewhat intellectual. I will go to take notes and forget everything I was going to write or even what it was about. I will write the wrong words, say the wrong words, and forget words completely. I will have to look up additional information to be able to understand some things. I will spend 12 hours a day doing homework, even when my body shuts off after hour number three.
Although I am embarrassed with how many hours I spend working on schoolwork, I am proud of the work that I accomplish. Since my injury, and the pain turning debilitating daily, my ability to think and function has significantly diminished, completely disappearing at some points. I’m not sure how much is a result of my head injury, and how much is brain fog from being in severe pain, but I do know that it is extremely frustrating to not be able to think. It makes you feel like the dumbest person ever, embarrasses you every day, and makes you want to hide from the rest of the world. Despite these feelings, I have learned that others rarely perceive my difficulty and mistakes as me being dumb, as they often just laugh and brush it off to nothing. Whereas others perceive my mistakes as innocent errors and barely even notice, each mistake reminds me that my brain is no longer the same as what it used to be. I know that others mean no harm by their jokes or laughs, but it is also a direct reminder that they are oblivious to what I am going through.
A lack of memory and the inability to think can make you feel dumb and ashamed while still receiving a 3.9 GPA. I have learned that just because my brain no longer works the same, that doesn’t mean I am any less capable and certainly doesn’t indicate that I am dumb. I have learned that if I dedicate enough time to something, then eventually I am able to produce something that I’m proud of. This means fighting back when my body shuts off from pain and means spending 10x the amount of time it should take to complete anything. It means completely devoting yourself to a different lifestyle than anyone else around you, just so you are able to produce your best work and hopefully succeed. Although my time alternating from homework and debilitating pain is not ideal, it is my way of adapting to my conditions and not allowing the pain to hold back my future.
Through my educational experience, I have compiled some suggestions that helped me be productive and successful, despite my pain, and might be able to help you the same way!
Tips and Tricks to Help You Survive
Meet with the disability services at your campus
The disability center can be a great resource to connect with at your school as there is a lot that they are able to do to assist your needs. The accommodations permitted depend on your school, along with your documentations of proof. Examples can include access to professor’s notes and PowerPoints, excused absences, longer time on assignments and tests, distraction free test rooms, use of memory cues, priority seating, priority class registration, permission to use various technological assistance, etc.
Make a class schedule that works for you
I have found that what works best for me is to stack my classes, putting me on campus twice a week from 8:45-3:15. Since going to class makes my pain significantly worse and leaves me incapable of doing anything afterwards, I want to minimize the suffering to two days a week rather than more. This schedule allows four full days for homework, along with a day break in between classes, which I primarily use to recover pain-wise. The downside of this schedule is that I’m usually one campus for an hour before the pain becomes excruciating, which then makes the next five hours unbearable.
Online classes
Either you hate this, or you love this. I personally love online classes as I rarely find in-person classes to be valuable to my time. Maybe it is due to the school I am attending or the subject I am majoring in, but I feel as though professors only reiterate information from the textbook rather than actively teach it. Not only do I feel as though online classes are more time efficient, they also help minimize the pain in various ways. Online classes allow more flexibility, allowing you to work around your pain in the environment you feel most comfortable in.
Find a comfy school bag
Lugging a heavy backpack all over campus can result in shoulder, neck, and back pain. Since these areas are often already problematic for EDSers, it’s important to be extra mindful of where your backpack hits you in relation to your pain. For the past couple of years, I have preferred a tote style bag that I hold on my forearm rather than a backpack. Fortunately for me, I’ve never had to bring any textbook to class, making my laptop the main thing I have to carry. If you have a professor that requires you to bring your textbook to class, I would highly recommend buying the online version of the book. Another option, especially if you have a lot to carry, would be a rolling backpack/bag.
Note taking techniques
A good portion of college work entails taking notes, making it fundamental to find the best technique for you and your pain. I prefer typing over handwriting because it causes less pain to my wrists and allows me to write at a quicker pace. When typing for long periods of time at home, I wear wrist braces to help prevent worsening wrist pain and carpal tunnel. For note taking, you can also use voice-to-text generator, or if you have the money, a smart pen. Additionally, if permitted by the disability center, you may be allowed to audio record lectures to use as a later resource.
Blue light protection
As technology has become a prominent element of society, a majority of schoolwork is now completed online. Although there are various benefits of this, starring at a screen all day can strain your eyes, disrupt your sleep schedule, and cause physical damage to your retina. It wasn’t until my head injury, when I became extra sensitive to light, that I noticed how much looking at a screen worsened my headache. I purchased a pair of blue light blocking glasses from Amazon and was surprised with how much they helped! If you get prescription glasses, you can have blue blocking lenses put in. They also have blue light blocking screen protectors for phones and computer screens.
Write down EVERYTHING
If you struggle with your memory like I do, write everything down in a place you will look at. I typically use my phone to take daily notes of what I have to do and when I need it done by. I always have my phone, I’m frequently on my phone, so most of the time I can count on remembering to check my list.
Reread assignments
Since you never know when brain fog is going to get the best of you, it is important to reread everything before you turn it in. You don’t want to get graded down for a small mistake, so I always reread my work along with double check that I covered all the assignment requirements. I often miss my mistakes as I register what I wrote as what I meant, so it is beneficial to have someone else proofread your work or to use an editing website (Grammarly, paperrater).
Find a studying method that works for you!
It wasn’t until college when I finally figured out the most efficient way for me to prepare for tests. Since doing this, I almost always do well on tests, which is shocking since I struggle to remember anything. First, I actually do the assigned readings, taking notes of any definitions and important information. Then, I add any additional information to these notes during lectures. Once it is a week or two before a test, I make a Quizlet using all of my notes. I use the app on my phone, alternating between the flashcard feature and the learn feature. I star all the terms that I don’t know, and then keep going through the flashcards, unstaring them when I remember all the essential information. Of course, you could also make your own notecards, but since I usually have close to 400 terms, I prefer copy and pasting my notes.
Always plan ahead, and look for your pain patterns
Since you never know when a bad flare-up could happen, you constantly have to anticipate, even when almost everyone around you are procrastinating. After my head injury, doing schoolwork takes me a ridiculous amount of time, so I have to plan accordingly. For weekly reading, assignments, and quizzes, I like to have it done before the week even starts. Then, of the 5-day week, I spend two days where I do homework for the next week, and if I’m able to, I also spend some time on my “recovery” day. For papers and larger assignments, I start at least a week in advance. I have learned to keep myself ahead and finish assignments that others haven’t even started in order to work around my pain patterns. I know that due to my head injury, each day I will have between no time and a couple of hours in which I will be able to productively do schoolwork before the pain becomes unbearable. Ideally, I want to be so far ahead that when I get past the point of being in too much pain, that I can stop and not have to worry about the deadline.
Prepare the night before
Again, with planning ahead, I try and do as much as I possibly can the night before I have anything. Having things more prepared makes getting ready easier, less stressful, and quicker. The night prior to class, I shower, blow dry my hair, and pick out an outfit. I have been doing this since I was in elementary school and I honestly can’t imagine a different routine that would work better for me. Finding a cute outfit takes more time and energy to put together than just throwing on some clothes, but for me, it helps me start the day with a better attitude, makes me feel ready for the day, and puts me in a more confident mood. I realize that not everyone cares about clothes, but I think it’s important to find what makes you feel good and then find a way to incorporate it into your daily routine. Additionally, I get my school bag ready the night before with any supplies I will need, plug in my laptop to charge, and pack a snack.
Always bring water and snacks to class
This one is pretty self-explanatory; you aren’t going to feel your best if your body is dehydrated and starving. I always bring my Hydroflask filled with ice water and a snack of some sort. Since I’m constantly hot, dying of head pain, and bored in class, I usually just sit and drink water to try and help with all three.
Don’t be ashamed to share your experiences
Prior to receiving my diagnosis, I shared elements of my experiences with classmates and professors and I was pleasantly surprised by their reactions. Although I’m not sure any of them have truly understood the extent of my struggles and pain, college has been the first time where I felt as though others were mature enough to try and understand. Since college is an environment intended for learning, it can become the perfect opportunity to open society’s eyes to invisible illnesses and the reality that chronic illnesses produce. Through sharing our unique experiences, others have the opportunity to learn information that a textbook or a lecture could never sufficiently teach.
When the assignment guidelines allow, my topic interest typically stems from my personal experiences. This allows me to expand my knowledge in areas relative to my life, but also produces information that can help increase society’s awareness. Two years ago, an essay I wrote addressed the prevalence of chronic pain, the psychological effects, and the seriousness. Writing this essay directly strengthened my relationship with the professor as he reached out, engaged in a personal conversation, and provided support. Last year, the presentation of a different essay taught almost an entire class of psychology students that treatment-resistant depression exists. This was shocking to me as TRD is prominent and life changing yet isn’t mentioned in any textbook or psychology course that I have taken.
It can feel uncomfortable to discuss pain, sadness, and illnesses, but just remember that the lack of comfort stems from society’s reaction and perception of the issue rather than there being something wrong with what you’re experiencing. If you have a chronic illness, then it is no secret that most of society lacks a proper understanding of being medically complex and therefore responds in damaging and isolating ways. I feel as though the discomfort of having these informative discussions is necessary to make progress and growth within society, hopefully normalizing these conversations, topics, and experiences for the future. The biggest perceived consequence there is to face from discussing your experience is often ignorant and rude people. Although these reactions can be hurtful and disappointing, I see it as an opportunity to separate those who understand and support me from those who hold a damaging perception and are better to avoid.
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