By: Chelsea Goldstein, Dysautonomia Information Network
Attending college is a huge decision for anyone. The decision becomes even more complex when you have to consider navigating college with a chronic condition, such as dysautonomia.
Remember that only you know the right decision for you regarding college. There is no shame in choosing a different path or delaying college to focus on your health. We also recognize that attending college in the era of COVID-19 is difficult and may not be an option for many of us. Refer to the "For College Students" section of our article, Knowledge is ePowered: Distance Learning for People with Dysautonomia, to help make a decision about attending college remotely or in-person, especially during COVID-19.
This article is for readers who currently attend college in-person or know they would like to have an in-person college experience in the future. We hope it helps you navigate some of the major aspects of college living including classroom education, medical care, housing, dining, and getting around.
Navigating the Classroom
Upon entering college, it becomes students' responsibilities to communicate their learning needs. Here are a few things to consider when navigating the college classroom with dysautonomia:
I've had the unique experience of attending college with dysautonomia, and then working as a college professor eight years later; utilizing both perspectives, I can confidently state that communicating with your professors about your needs early and often is one of the best things you can do.
First, I never realized how little information professors get about student accommodations prior to becoming one. For example, I received a list of student names and accommodations when I was a professor, such as "may access class material digitally," at the beginning of the semester. That was it. So, I set up meetings with disability services, and reached out to each of my students with accommodations to learn more. Some professors will be proactive with accommodations, but many will not. Thus, we highly suggest reaching out to your professors for a short meeting to discuss your accommodations by the first week of class if you have not already heard from them by then. It may also help to bring any disability packets/forms you have from the university (1).
We know this can be an intimidating conversation, so try to think of it as a "practice run" for advocating for your health later in the workforce. While you don't need to divulge a ton of information about your health, you should prepare specific ways your professors can support you. For example, you could explain that "accessing material digitally" is most important when you have a bad flare and need to attend class by calling or videoing in. Most professors will respect a student who has the maturity to communicate their needs early in the semester, and they will appreciate having a clear plan on how to best support you.
Even if you establish great rapport with your professors, you should always document formal accommodations with disability services to ensure your needs are protected. I always feared disability services would deny my accommodation requests when I was a student, but I've since learned that most programs are student-centric and will not force students to go to inappropriate lengths to "prove" their conditions. Just remember that accommodations are not retroactive, meaning professors are only required to honor them after they are formalized. You may even consider meeting with your disability department prior to the school year either in-person or remotely to start the process (2,3).
Documentation is especially helpful for professors who have several students with accommodations. Formal documentation allows them to advocate on your behalf throughout the university, as needed, and helps them honor your classroom needs while still ensuring "fairness" among all students.
Remote Attendance (As Needed)
There are an increasing number of online college programs for students who want entirely remote education experiences. Many traditional programs are also now offering their courses online due to COVID-19. While remote learning can be a great option for students with dysautonomia, we also recognize that some people want to have in-person college experiences or may be interested in a career path with limited remote options. In these cases, you may want to consider how you could attend your classes virtually on an as needed basis.
My university rarely granted accommodations for students to simply miss class. Instead, they often granted accommodations for student to access all class materials digitally, as well as extended deadlines to help students work around flares. Every university is different, but if you suspect that you will need to occasionally miss class due to your health (which is likely with dysautonomia!) then you should work closely with disability services and your professors to determine how that will be established. One blogger suggests having a friend, staff member, or even the professor set up a video or phone call on an electronic device to attend class remotely, and some universities even have telepresence robots for these circumstances (4). Some professors may allow you to attend class on your own time, at your own pace by engaging with class materials and activities that are supplied digitally. Remember that professors, classmates, and even department staff are willing to help with logistics in most cases. Also don't forget to ask disability services what university resources exist to support your education in a way that works for you. You may be surprised by what is available!
As I am sure you are aware, dysautonomia requires a lot of preparation. I'm often the go-to person when friends need something while we're out because I always travel with my dysautonomia survival kit that is equipped for most scenarios. This survival kit may be especially important in college because you'll be in multiple classrooms with different furniture, lighting, and temperatures, you'll have to navigate the terrain and weather as you move around campus, some classrooms may be on high floors with limited elevator access, you might not have many friendly food options on campus, and you might need to find spaces to recline throughout the day. No matter the circumstances, you'll probably need to have your emergency medications and other symptom management supplies at the ready.
While this list of scenarios may seem intimidating, you have probably thought through (or experienced) most of them and more, and they are possible to navigate when you have the tools and support you need. My survival kit is filled with snacks, electrolyte packets, tons of water, extra medications, gloves, spare clothing, IcyHot, a knee brace, compression socks, mints for nausea, doggie bags for vomit, and even a chunky scarf to use for warmth or as a pad on a painful chair. My survival kit comes with one major issue, however: it's heavy! I've tried to minimize its contents over the years, but I need a lot of water and water weighs a lot. So, my kit often made my dysautonomia flare when I lugged it across campus, especially in extreme weather. Many students with dysautonomia recommend a rolling backpack for this issue (1). It may take some time to refine your kit, but once you do, make sure you always have it packed and ready.
College students with dysautonomia and other chronic conditions need to consider how they will access medical care while attending college, especially if if their school is far from home.
Getting Medical Care:
Medical care should be a priority of your college visits. Try to meet with student health services during your visit and ask if they are familiar with dysautonomia. You could even try to have some meet-and-greets with local doctor's offices. Virtual appointments are options with many providers if you aren't able to travel due to COVID-19 or other circumstances.
Once you decide on a university, schedule an appointment with student health services as soon as possible, even if you do not plan to utilize them frequently. Bring a complete copy of your medical records to the appointment, and use this time to explain your condition(s) and how you might need support throughout the school year. You should also ask about after-hours services and the nearest hospital (2). Some people also like to arrange appointments with their regular doctors and specialists during college breaks. If that is your plan, try to schedule them as soon as possible.
Since you may be far away from your usual support system of friends and family, you will want to ensure you have a way to communicate your medical information in emergencies. One person kept an emergency note in her dorm that included medications, conditions, and emergency contacts (3). Some apps also store this information, just make sure someone knows how to access it in the event that you are not able to do so.
Getting Medicine and Supplies:
Start by creating an "inventory" of the medicine and supplies that you use, including refill frequencies. One of the health management apps in our article, Optimized Living: Helpful Existing Technologies for Life with Dysautonomia, may help. Then do some research on the pharmacies and suppliers near your university. Can you get what you need locally?
When you do your local research, identify at least two suppliers for each medication or item that you need so that you will never go without even if one supplier is out of stock or closed. You could also consider getting medicine and supplies delivered to you. In this case, make sure you know the shipping times of each item, and talk with your university mail department (if you live on campus) to make sure that they will properly care for any packages that require special handling.
In all cases, an emergency stash of medication and supplies can prevent difficult, even dangerous, situations. For example, I went without an important medication for a few days in college when my insurance sporadically decided not to cover it. Since the insurance office was already closed for the weekend, I could not appeal until Monday morning. I am sure many of you have had similar situations. An emergency stash can help in these moments, especially if you are at college and have limited local support.
Housing and Dining
Where we live has tremendous impact on our quality of life. Things such as lighting, smells, chemicals, mold, temperature control, sound, and accessibility are but a few important elements that can make or break our living environments. Take some time to identify the elements that are most important for your quality of life prior to moving into a college dorm or other shared housing. For example, I know that I need good temperature control to sleep, and that even minor chemicals and mold trigger my headaches and fatigue.
Once you've identified your non-negotiables, contact the university housing department to discuss your needs. You may also want to ask them about stairs, elevators, accessibility to bathrooms, and distance to your classes. Again, most universities are willing to work with you when you are proactive. Roommates can also dramatically impact your experience, so take your time to choose them wisely. If you will be assigned a roommate, let the housing department know what qualities you need in a living companion, such as someone who is clean, quiet, and understanding.
You should also consider your plan for move-in day if you plan to live on campus. At many universities, students are given short move-in times and are expected to carry heavy items over long distances, which may not work for you and your dysautonomia. One person with chronic illness recommends minimizing the items you bring to college as much as possible, and scheduling your move-in time early (3). You could also work with disability services to get an off-set moving time, to ensure elevator access, to park as close as possible, and/or to secure an extended move-in period.
For many of us, food is an important aspect of managing dysautonomia. We often have dietary restrictions, and we need to ensure we can get access to the foods we need when we have limited energy and mobility. As is generally the case with dysautonomia, planning ahead can help you manage your nutrition.
Students can often arrange tours with food services during college visits to learn about the different options on campus, and to discuss food ingredients, preparation, and specific allergies or sensitivities. Students should also ask about the hours of different dining options, and note the distance of each option from their dormitory or department building. If you find that the food options are too restrictive at a particular university, you should seriously consider if there is a way to meet your dietary needs outside the university dining services. In this case, you may be able to appeal to your university to waive any required meal plans (5).
In addition to a strong understanding of your on-campus food options, many people with chronic illness suggest having in-dorm back-up meals for when you don't feel well enough to get to a dining hall. One person suggests meal (or snack) prepping once a week to ensure you have food on hand. We know this can be tricky in a dorm, but many buildings have a communal kitchen, and you can try some of the many online dorm recipes, like these. Pinterest is a great resource for ideas, and our nutrition articles may also be helpful. Another person recommends bringing containers to the dining hall (if allowed), to pack up to-go meals for difficult days. Meal delivery services and takeout can be expensive but are other options (1).
The ability to get around campus (without exacerbating symptoms!) is yet another important factor of a good college experience with dysautonomia.
You guessed it - once again, planning ahead is an important step to ensure you can navigate campus well. If possible, travel the routes you will take each day between classes before the semester starts. Take note of anything that may help or hinder your daily route. For example, one person focused on identifying the closest accessible bathrooms, which elevators moved fastest, what pathways were easiest to use in inclement weather, and the weight of doors on her route (3).
Planning ahead can definitely help you to feel comfortable on campus, and it may decrease some anxiety regarding getting around once classes start (6). Even still, you could discover additional barriers once campus is crowded with students moving between classes at once (e.g., full parking lots, standing room only on buses, and long lines for elevators), or when there are changes in weather. For these instances, you could work with disability services to get an accommodation for extra time to travel between tight class periods so that you have time to navigate these barriers safely. Be ready to identify how more time could help you. For example, you could mention how you need to take a seated break when walking between buildings to prevent syncope, or that you need to use the elevator for higher floor classes and there are generally long lines during popular class change times.
Driving and Public Transportation
Parking is notoriously difficult on most college campuses. So it's helpful to ask yourself a few questions ahead of time if you plan to drive to class:
- How far are the student parking lots from my buildings?
- Do these lots fill up at specific times of day?
- Can I travel from these lots without jeopardizing my health?
- What if the weather is bad, or I have to carry heavy items?
If any of these questions raise concern, you may want to consider getting an accessible parking permit. This article provides some guidance on getting a state issued permit, and most universities also offer their own accessible parking passes. I used a university accessible parking pass during my last semester of college that dramatically decreased my daily walk to class. I believe this was one of the most critical tools that helped me attend class and finish college with dysautonomia. I also found that the application process was relatively easy - I secured a letter from health services stating I needed a pass, and took that letter to parking services. I got the pass that day.
You may want to ask yourself similar questions if you plan to use any type of public/university transportation, such as buses. How far are the bus stops from your classes? How long do you need to wait? Would you feel comfortable using accessible seating? Is the bus generally on time?
Work at Your Own Pace
Remember that there is no single way to pursue an education. Even when you attend college in-person, there are generally ways to modify your experience to fit your needs.
I ignored my dysautonomia symptoms when I first experienced them during my junior year of college, and placed tremendous pressure on myself to handle a full course load, participate in extracurriculars, and maintain my social life even though my body was crying for a break. By the end of my senior year, I was in such terrible physical shape that I had to drop courses my last semester. To graduate, I had to return the next fall semester to take the two courses I had dropped. It was the slowest semester I had ever had. It was also the hardest, and the one that makes me most proud.
I share this story because back then my shame is what drove me to keep up with the "normal" college course load, and it was also what caused me to experience a horrendous flare that ultimately forced me to drop classes and graduate from college later than expected. Looking back, I'm not ashamed at all that I didn't "keep up" with my peers. In fact, I'm incredibly proud of graduating late because I graduated during one of the most difficult times in my life, and I asked for the help I needed to accomplish this goal.
So, as you plan your college course load, please consider all options available to you, and how you can realistically pace yourself. This may include some online classes, even if you live on campus, or attending college part-time. It could also mean taking a semester off.
Once you settle into your course load, you may be tempted to procrastinate, just like your peers. One student with chronic illness quickly realized the dangers of procrastination if she has a flare the day before a due date, and she hasn't started her assignment (1). Here is a list of tips to help with procrastination, especially when it comes to writing. Time management tools can also be very helpful. I love the Urgent/Important Matrix because it keeps me focused on the most pressing tasks, but it's important to find an option that works for you.
Also try to be realistic about your course schedule. Are mornings difficult? Avoid those 8 a.m. classes as much as possible. Is it tough to be upright for multiple hours? Try to allow for breaks between classes. Your university may even grant you early registration if you have formalized accommodations.
You may find your symptoms flare unexpectedly during the year. Remember that you can always take an incomplete for a course, or take medical leave for a semester. While it is always difficult to drop a class or slow down, try to remember that you are not failing, but pivoting to prioritize your health so that you can return to your studies when you are well. You should also consider getting familiar with your university's policies on incompletes and medical leave so that you know what to expect if you need to utilize them (1,4). Above all, remember to be kind to yourself.
- Wyant, P. (2017, August 15). 28 Hacks That Can Make Going to College with Chronic Illness Easier. The Mighty. https://themighty.com/2017/08/hacks-tips-college-school-chronic-illness/
- Shaffer, S. (n.d.). Managing Chronic Illness in College. Collegiate Parent. https://www.collegiateparent.com/wellness/managing-chronic-illness-in-college/
- Ladau, E. (2017, August 10). 12 Things I Wish I'd Known Before Going to College with a Disability or Chronic Illness. https://www.self.com/story/12-things-i-wish-id-known-before-going-to-college-with-a-disability-or-chronic-illness
- Lewis, V. (n.d.). How I Attend College Classes Remotely with Chronic Illness. Veronica With Four Eyes. https://veroniiiica.com/2020/03/23/how-i-attend-college-classes-remotely/
- Sastry, A. (n.d.). College Students With Chronic Health Conditions. EduMed. https://www.edumed.org/resources/college-with-a-chronic-health-condition/
- Nelson, H. (2018, August 30). 5 Tips for Managing Chronic Illness Your First Year at College. Azusa Pacific University. https://www.apu.edu/articles/5-tips-for-managing-chronic-illness-your-first-year-at-college/
- 25 Insanely Healthy College Meals You Can Make in a Dorm. https://bysophialee.com/healthy-college-meals/
- How to Obtain a Handicap Parking Permit. https://www.verywellhealth.com/handicapped-parking-permit-189676
- Just Do It: Tips for Avoiding Procrastination. https://www.law.georgetown.edu/wp-content/uploads/2018/06/Kaavya-Just-Do-It-Tips-for-Avoiding-Procrastination.pdf
- The Urgent/Important Matrix. https://www.ucop.edu/pmo/_files/The%20Urgent-Important%20Matrix.pdf