Tips for Navigating University/College with POTS
POTS is a ruthless condition that often affects women in their childbearing age (although it can affect anyone). With this in mind, it's no wonder that many people with POTS become ill right before or during their college years. There's no perfect time to get sick but it's definitely no fun getting sick when you don't have the security of a post-secondary degree under your belt.
Before developing POTS, I was starting my 3rd year of my BA in Psychology. I was taking courses full-time while working part-time at my dad's office. When POTS hit me in the beginning of the spring semester in 2014 (January 20th), I pushed off withdrawing from classes until mid-February because I was hoping I had an easily treatable condition. I had to take a year off of school and this was one of the most frustrating experiences for me. My life was put on pause while everyone else's was moving forward. You might be thinking "a year off? That's nothing!" and yes, in hindsight, a year is very little, however, it took another year until I was able to make any dent in my degree. In Spring 2015 I took 1 online course and it went well so I began slowly easing my way back to school one course at a time. Now I am enrolled in 3 classes, which is technically full-time but still 1 less course than I was doing before POTS. One of my courses is 2 days a week or else I would've been able to handle 4 1-day a week courses or 3 in person and 1 online.
I am now in my 2nd last semester of my BA. I often get asked how I manage university with POTS so I decided to share some tips and tricks I've learned throughout the years.
*Keep in mind that I go to a Canadian University in which living on dorms is a rare occurrence and most universities are close to home*
1. Before I went back to school I read on a POTS article that you have to accommodate your school around your health and not the other way around. This was one of the best pieces of advice I received so I wanted to share it with all of you as well. Being in university will challenge your symptoms but you have to find that fine line between challenging and pushing yourself into a flare.
2. Get yourself acquainted with your school's disability service office. They are the ones who will set up accommodations for you and send them to your professors. There are several POTS organizations that provide a list of recommended accommodations that you can print off and bring to your first disability service appointment.
3. The only way you won't get behind is by being one step ahead. I've learned this the hard way. My symptoms will flare at some point in the semester and when they do, if I miss a week of readings, then the next week I will have to do 2 weeks worth of readings when I still don't feel back to my "normal" (which is different than a healthy person's normal). I struggled with this a lot in the beginning because when I was feeling somewhat well, the last thing I wanted was to sit down and read my textbook. I had to develop a lot of self-discipline in this area to be one step ahead in my schooling.
4. Get a planner you'll actually use. In the beginning of the semester write down the dates and times of your classes all the way until the end of the semester while highlighting days you have assignments due and exams. This will also help you keep track of your appointments and make sure you don't book them on days and times you have classes (when possible).
5. Find a version of your textbook that works for you. There are online versions, audio versions, and versions you can order online that are cheaper than your school's bookstore will offer them that can help accommodate your specific needs.
6. Ease your way back into school. When I was bedridden I was convinced that I had to go back full-time or nothing at all. It's hard not to get stuck in this black-and-white thinking. It's better to start off with just one class instead of overcrowding your schedule too soon and risk having to withdrawal from your courses.
7. My disability service office set up priority registration for me. At many universities, enrollment will switch between starting with those with the highest GPA, and starting with certain majors. Priority registration assures that as soon as registration for classes is open to the first group, you are included in that group. This has helped me to choose times and days for courses that work around my schedule (I've avoided 8:30/9AM courses whenever possible but a couple times it hasn't been possible).
8. Start your semester off by getting your textbooks, parking pass, student card, and whatever else you might need a week before the semester starts. If you leave it to the first week of the semester you will be waiting in long line ups and using extra spoons to rush around because now you need your book for that assignment due tomorrow.
9. If finances are an issue, many universities offer financial scholarships and grants that are for people with disabilities.
10. Have a school bag with a water bottle, extra meds, heat intolerance wipes (these have been life-savers for me during lectures because sitting still makes my heat intolerance worse. You can find a bunch of different kinds online), tissues, and anything you might need to help temporarily with symptoms.
11. My symptoms are personally worse in 3 hour lectures than most other times in my life. The sitting still with chronic pain, the concentration with brain fog, and the sitting still with blood pooling in your legs is a recipe for a disaster. I personally wear compression socks and tights whenever possible, have lots of water on me, choose shorter lecture times 2x a week when possible (instead of 3 hours 1x a week), and walk around on breaks to help with the blood pooling.
12. On the first or second day of class I like to introduce myself to someone around me and exchange names and phone numbers or emails in case one of us has to miss a class so we can exchange notes. I'm an extroverted person so I like making friends (or at least acquaintances) wherever I go and also feel a sense of accountability to show up even if I'm not feeling as well some days. But more than that, meeting someone gives me some additional security that if I do miss a class, someone can send me their notes.
13. I personally wasn't able to go back to school until I was 3 months in (plus the first pre-months) of Dr. Levine's POTS exercise protocol. Deconditioning doesn't cause POTS (current research has emphasized that) but POTS will cause deconditioning which only aggravates our symptoms more and more. Once I was on the right combination of meds for my body, I started slooooowllly focusing on reconditioning. It took around 6 months for me to notice any difference but 1 year to notice a big difference. I'm still doing month 4 out of 6 because I just did enough until I could go back to school and was only slowly progressing (at a different rate than Dr. Levine suggests) after that, but I do it fairly consistently.
14. I also wasn't able to take more than 1 online course until I was prescribed Modafinil. Dr. Satish Raj has been doing studies on this medication for the use of severe brain fog and fatigue for those with POTS. I didn't notice at first if the medication was helping so I went off of it and noticed a HUGE difference. Modafinil is not a stimulant in the sense that Adderall or Ritalin is but it improved my fatigue and brain fog enough that I could concentrate for longer. In addition, going back to school helped my brain fog a tad. Obviously being an educated, university student didn't prevent the development of POTS and the brain fog it causes in the first place, but dusting off my brain after being bedridden for a year helped a tiny bit.
15. I also use a lot of peppermint essential oil to help concentrate during exam time. I also have an essential oil necklace that I put peppermint oil in and wear during exams.
16. I write my exams in the Disability Service Offices at my school instead of in my classrooms. This has been a huge help because they have given me extra time, bathroom breaks (which they can't do in a lecture hall), access to water, medication, my essential oil roller, and snacks (they also can't do that in a lecture hall because they can't manage whether or not you're keeping notes rolled up in the snack bar wrapper). They also have a thick individual mat inside my room in case I need to lie down during exams or for breaks. I haven't had to use it but just knowing it's there has been a huge help for me!
17. Writing exams is still really hard for me. Before I developed POTS, I had severe memory loss that we assumed was because of a car accident I had as a kid (now we're thinking it had to do with POTS). I would lock myself in my room for 1 week at a time and do nothing but study before an exam to get a C+ or B (I'm not exaggerating. All my exes knew this and knew they wouldn't be seeing me for a week). I was (and still am) so much better at writing papers, or other methods of grading, so I would eventually even out my grade a bit more. However, since developing full-blown, severe POTS, I am unable to study like I used to. All the tips I've said up until this point have been helpful but I still often underperform when writing exams. Memorizing and regurgitating information has never been an accurate way of demonstrating my knowledge. In fact, oddly enough, I do way better on questions requiring a written answer than multiple choice because I can explain what I know instead of being tricked by multiple choice. Unfortunately, there are just some things you cannot control for when you go back to school with POTS and for me, exams is one of those things. Modafinil hasn't improved my memory, nothing in this lifetime has improved my memory so far, so I have had to learn that my identity is not rooted in academic achievements and have learned to accept a lower grade. This may be hard for you if you were a type A perfectionist before POTS, like myself, but it'll be a huge and valuable lesson to learn. One way I've managed to avoid the consequences of my poor memory while progressing in my degree is by choosing courses that aren't only marked based on exams (I've had a class in which 50% of your grade was based on your midterm exam mark and 50% was based on your final exam mark). Thankfully, the upper-division courses in my program often grade in a more comprehensive way. Also, if you're not choosing to do your Masters program then, "C's get degrees" so don't beat yourself up over what you can't control!
18. There's a closed Facebook support group called "POTS in college" that has been really helpful for me!
19. If your school is like me, they will only accept their very specific form of doctors note (available on the school's website) when missing an exam or major project. I keep a copy of this in my hospital bag and a copy in my car just in case I end up in the ER and need a doctor to sign off on it. I will then take a picture of it and send it to the disability service office and my professor. My disability advisor acts as my advocate and will share my rights with my professor if I miss an exam with a doctors note. I've learned this the hard way because often when you're chronically ill you don't go to the doctor or ER for every little inconvenience and you definitely don't get doctors notes for just anything. Most schools also have a doctor on campus who will not charge for doctor's notes and will examine you to see if you need one in their opinion.
20. For more minor projects and assignments, my professors have always been accommodating if my illnesses get in the way of submitting something on time without a doctor's note. The only reason they do this, though, is because my advisor from the Disability Service office sends all my professors a report of my accommodations and rights at the beginning of the semester. Which is why I highly recommend intentionally creating an open dialogue between you and your advisor and you and your professors.