Chronically Organized: Surviving College With Chronic Illness (Sarah)
A new semester often means new and exciting opportunities to get involved, advance your goals, and gain further knowledge. However, a new semester means something unique for every student. While one student may need to pick up textbooks, finalize classes, and accept a fellowship, others are catching up with their friends and family and are soaking up the final days of break. The experience of another student may be spending those weeks over break meeting with disability services, talking with their advisors, consulting their doctors for updated care plans, and sending their accommodations letters to professors while also picking up supplies, and hoping another flare doesn't alter their plans. Every student has their own story that is still being shaped, yet is filled with responsibilities, challenges, and opportunities.
As a first-generation, non-traditional university student with Behcet's Disease, IBD, Hashimoto's, Median Arcuate Ligament Syndrome, and Trigeminal Neuralgia, attending college is no easy task. Prior to attending college for Anthropology, I struggled for three years to eat and fight malnutrition due to the rare disorder, Median Arcuate Ligament Syndrome. In 2018, I finally received open surgery to release the 98% compressed celiac artery in my abdomen. After waking from anesthesia, the number one thing I wanted to do was go to college. I wanted to study abroad, volunteer, and work towards a path that would lead me to serving at-risk youth while also being able to pursue my love of writing.
After re-learning how to walk and struggling with chronic pain, one year post-op, I enrolled at GRCC. My goals have remained the same; however, I never expected that after receiving a life-saving surgery that my body would begin collecting chronic disorders like limited-edition baseball cards. Following surgery, even though I could eat again, I found myself experiencing new symptoms and flares that I hadn’t experienced prior to surgery. Through a journey filled with chronic pain, anger, fatigue, tolerance, and uncertainty, I found methods of organization to maintain flexibility, motivation, and compassion while living with rare autoimmune disorders as not only a college student but while interning and working as well.
Five Organizational Methods and Tools to Succeed
Out of the five organizational methods and tools listed below, you will probably find that many of the tools to succeed are simple to use and easy to access, while others are important reminders for navigating through chronic illness. Additional helpful resources to reach out through your university include Disability Services, your college’s Counseling Center, Academic and Career Advising with your faculty and advisors, and the key to navigating college with chronic illness will always be Communication! It is so important to be open and honest with your professors so they can help to develop a plan and accommodations are in place to help you achieve your goals!
Breaking Up With Procrastination
Everyone at one point or another struggles with procrastination and anyone who struggles with chronic pain, fatigue, brain fog, etc. knows that procrastination isn’t laziness; it usually means that we need to compartmentalize our priorities differently to avoid burnout. When I switched from a part-time course schedule to a full-time schedule, one thing I experienced more often was a 7-day workload, anxiety, and more frequent flares. The methods I used as a part-time student were no longer enough to help me manage a full-time course load. As a part-time student, if I was feeling exhausted at the end of the week, it was fine to create a daily to-do list the night before. Now as a full-time student, one way I beat procrastination and the nightmares associated with forgetting to write down an assignment is scheduling in my schedule on Sunday. This means taking 20-25 minutes to create a list of the next week’s assignments along with their due dates. By having a list of due dates and assignments for the week, I can see a timeline for where I can schedule rest, appointments, or hobbies.
2. Link Your Priorities!
One of the most useful tools I can say I have mastered as a student and as a patient is linking my priorities. As a patient, I’m sure at one point or another you have heard of linking medical organizations on MyChart so not only you but your providers have access to all records, the same way I link my patient records across medical organizations is the method I use for college. What I mean by this is to find a to-do list app (my favorite app is Microsoft To-Do!), take control of your Google Calendar, and pay attention to the tools you frequently use or need during the
week. By linking your appointments, medication schedules, weekly assignments, zoom meetings, and tasks to one location, it makes it easily accessible in those moments where time is of the essence – this is super useful when needing to schedule doctor’s appointments or advising!
3. Mastering Brain Fog
Have you ever second-guessed whether you remembered any of the information from your textbook correctly? Do you struggle with needing to re-read a sentence over four times before you can comprehend what it means? As a student experiencing chronic illness, brain fog is the culprit to many insecurities when transferring knowledge from the textbook to the classroom.
Oftentimes, when my professor would ask a question about our weekly readings, I find that I usually knew the answer but was too busy second-guessing whether my memory was reliable that day to speak up. Now, when I say mastering brain fog, I don’t have a magic cure that will clear your mind, but I think it is an important key to persevere.
One study published in the National Library of Medicine states that 15 to 40% of chronic pain patients experience brain fog, as most studies on brain fog now focus on the effect that long-COVID has had on patients; I think it is important to suggest that brain fog is a complex feature that many patients and college students experience. Some of the symptoms associated with brain fog listed by Cleveland Clinic include: Trouble focusing, Slow reaction times and information processing, difficulty staying attentive, and more.
One of the best ways I have found to master brain fog is to give my brain a break! This is when your to-do list comes in handy. Don’t just schedule in your assignments – schedule a nap, a walk, a shower, etc. Whatever gets you to step away from your work for even 20 minutes at a time can help to reduce your stress levels.
4. Utilize Mobile Devices to Maintain Productivity
During a flare, just walking up the stairs or washing my hair feels like an exhausting task. When needing to complete assignments by their due dates, it would be nearly impossible if I didn’t utilize mobile devices. This is useful not only for online classes but for in-person classes as well. For example, lugging around the weight of a backpack filled with textbooks, notebooks, and a laptop is not ideal even after you’ve healed from surgery. Trading in the traditional backpack or laptop bag for a mini backpack, a tablet for notes, and e-books can make your in-person load much easier to manage. Similarly, utilizing mobile devices during a flare-up or when you just simply don’t feel well and need to write notes or read a textbook from the comfort of your bed or a recliner make those times much easier.
More devices that are useful are called assistive technology; these are devices like Glean, voice recorders, screen readers, magnification, or Smart Pens. It is important to discuss assistive technologies with the disability services department and your professors at your college to ensure that the assistive technology you plan to use is allowed in the classroom. However, these are useful for personal note-taking outside of class, as well.
5. Don’t Be Afraid to Be You
One of the most difficult and, at times, heartbreaking parts about having a chronic condition while in college is that nobody can predict the amount of flares, hospitalizations, and situations that can prevent you from going on-campus, attending meetings or gatherings, or taking in- person classes. This can make a student feel isolated and that their condition is limiting their chances of making friends and connections or being able to experience college life.
One study published in the Pakistan Journal of Medical Sciences, university students in Pakistan found that 35.8% of students experienced depression while in college, and 88.4% of students reported experiencing severe anxiety. Additionally, another study conducted by the University of Michigan College of Public Health found that, in an assessment of 96,000 students across 133 campuses, 44% had experienced depression, and 15% of students had considered s*icide.
It is important to be kind to YOU; we never know the unique story behind another student, co-worker, employer, or professor. It is wonderful to find others with similar interests, but don’t be afraid to be yourself and connect with others with wildly different interests or experiences than you. Even if you are not able to attend in-person classes, it is completely possible to make friends in an online class. Create a GroupMe for your class to chat about the course, attend virtual meetings held by student orgs, reach out and introduce yourself to professors, and allow yourself to be the most honest version of yourself.
Most of all, Don’t forget that your LAD fam is always here to offer hope and support!
References
Asif, Saba et al. “Frequency of depression, anxiety and stress among university students.” Pakistan journal of medical sciences vol. 36,5 (2020): 971-976. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7372668/
Cook, Destiny. College Students' Anxiety, Depression Higher Than Ever, but So Are Efforts to Receive Care, University of Michigan College of Public Health, 9 Mar. 2023, sph.umich.edu/news/2023posts/college-students-anxiety-depression-higher-than-ever-but-so-are- efforts-to-receive-care.html.
Dass, Ronessa et al. “Understanding the Experience and Impacts of Brain Fog in Chronic Pain: A Scoping Review.” Canadian journal of pain = Revue canadienne de la douleur vol. 7,1 2217865. 10 Jul. 2023, https://pubmed.ncbi.nlm.nih.gov/37441085/
UCI Disability Services Center. Note-Taking Tools, dsc.uci.edu/at/note-taking/.