It was with a truckload of emotions that I pulled up to my apartment last Monday night, before my eighth semester of college. While being at school means seeing my friends again and keeping busy with interesting things, it also usually means grinding myself into pieces as I try to get all the required work done in the midst of PANS and Lyme. College isn’t easy for anyone, but trying to do it with these chronic illnesses can make it a hundred times worse.
I thought I was looking forward to being back, but as I began to unpack, I was overcome with dread and despair, and I had a meltdown. This wasn’t a PANDAS-triggered flare meltdown—this was the meltdown of someone who is simply beyond tired of having to function with a debilitating illness. Yes, it’s important to realize that not every emotional outburst from someone with PANS is caused by brain inflammation—we’re human just like everyone else.
Even though I made straight-A’s last semester and seemed totally together on the outside, honestly, I was a train wreck most of the time. I easily spent (and still spend) two or more hours a day on food-related rituals and obsessions. I restricted until I became too weak to walk to class without losing my breath. And then I binged a lot… And purged. (How I got to that point after not eating because I feared vomiting so much a couple years ago is beyond me.)
As if an eating disorder weren’t bad enough, I had one horrendous PANS flare that almost hospitalized me, and several others that left me unable to get any work done. Sometimes, it took me eight hours to get over my anxiety about starting an assignment, and then another four to complete it. I often slept only two hours and lived off caffeine.
If last semester were the only one that was so difficult, maybe I wouldn’t have been so upset about the idea of getting through another semester. But truth be told, most of my semesters have been almost as bad—and some worse…
Freshman year, I was at least halfway asleep most of the time, which resulted in a narcolepsy misdiagnosis (hence my being the “Dreaming” Panda). Sophomore year, I was often half-crazy, because I had terrible PANS flares every week or two, and in between them, I was barely living. Junior year, I was almost okay… Until I got Lyme disease and anorexia in the spring.
Would you want to be back at college if this was how it’d gone so far?
Yet as hard as college has been, I decided this week to gird my loins and do whatever it takes to finish—even though it means enrolling in 16 credits now so that I can graduate in December. The thought of staying beyond then is simply too much to handle.
Indeed, these first three days of school have been anything but easy so far. I have more homework than ever before, and more pressure to do well now that I’m a senior. And on the second day of class, I had a Herxheimer reaction that put me on the couch and shut me up inside my apartment all weekend—but thankfully, I was actually able to get some work done.
But you know what? Even though college with Lyme and PANS is difficult, I’m just glad that my Lyme treatments have made me well enough to be here trying at all. A month ago, my family and I were looking into residential care, so I consider it a gift to even be able to struggle through school again.
At the start of every semester, my parents have tried to encourage me by saying, “Maybe this semester will be better than the last one.” Much of the time, it hasn’t been, but my Lyme treatment is most definitely relieving my symptoms already. And so, this time, I’ll join in their optimism:
Maybe this semester will be better than all the other tough semesters…
14 thoughts on “Why I’m Struggling through College… For the 8th Time”
I can imagine this is even harder with college than it is with 6th grade! I fought with it this last school year in 6th grade while you were fighting it through COLLEGE! I can see how much harder that might be!
Yes, it’s certainly difficult to do college with PANS/Lyme, but I will say that college at least allows for a more flexible schedule, and you don’t spend as much time sitting in class as you do in public school. 6th grade wasn’t so good for me, either, but high school was better. I hope things get better for you this year!
You’ve got this! One day at a time, your graduation day will come. Your courage and honesty in sharing your journey with us is so appreciate. Our son Carson is still struggling. He’s not really improving. He does stabilize from a flare but his baseline is not improving at all. The docs are now wanting to do an experiment to hopefully minimize the inflammation. The flip side is that he does NOT have PANS but rather an autoimmune disorder (Lyme or ??) Where did you get your Lyme testing done? And how was a diagnosis determined?
Hi Alisa, I’m sorry to hear that Carson is still struggling so much. I got my testing done through a lab called Igenex. The standard CDC tests for Lyme very often give a false negative when a person actually does have Lyme. Lyme is still mostly a clinical diagnosis, so it’s possible to get a negative result on tests and still have Lyme. But if a test IS positive, that’s a pretty good indicator that Lyme is at work. I did happen to have a very definitive positive Igenex test, and combined with my symptoms and history of spending time outdoors, it was pretty clear that I had Lyme. I’d suggest going to a doctor who specializes in Lyme. I’d be happy to give you some names via email.
Such willpower! I’m so impressed, keep fighting, you are so close to your goal. You are such an inspiration!!
Thanks so much! 🙂
You have come so far and accomplished so much, and now the end of your college career is near! I share your optimism and think this will be a good semester for you. I will keep you in my thoughts and wish you better health each day.
Thanks for the thoughts, Janet!
Blessings to you this semester! This is my final semester – only taking 3 credit hours, and I am so grateful for that. Beyond that, my PANDAS has been under control, and my husband and I just found out the joyous news that we are expecting our 1st baby! Sadly, we are having some complications and I’m on bedrest for a little while. It’s a strange feeling to go from having to force yourself to eat food to wanting food 100% of the time. I’ve been blessed to have no morning sickness whatsoever so far – just intense hunger. It’s weird how food-related obsessions are so common for people with PANDAS, and I’m looking at it a whole new way for the next 8 months or so. Much love to you, dear!
Thanks so much, and congratulations on the baby! That is fantastic news–I know you were praying and hoping very much for this to happen. I wish you all the best for everything! Praying you will have a healthy rest of your pregnancy/birth. 🙂
Amidst it all you still find time to write this blog…and for that, I am grateful! May this semester be the one that leads towards a more healthy you, a more enriched college life experience, and your ultimate path…towards the wisdom to decide on a career.
Thanks, Mary! I’ve found that writing this blog has been therapeutic and necessary to help me cope and process everything. I’m glad that there are so many people out there like you who read this and care! Thanks for the good wishes for this semester.
Do you have a 504 Plan for college which allows accommodations for disabilities, maybe even a safety net regarding grades? If not, you may want to consider, but I know you’re near the end of school at this point. Just curious, what’s your major?
Are you on a low dose steroid for POTS? Again, just curious, but it may help that & maybe other things as well.
How are your parents coping? I feel for them. Will pray for you all.
Hi Melanie, I did have a 504 plan that allowed me twice as long for all timed assignments, but since my processing speed is basically back to normal now, I haven’t been using the plan anymore. With a 3.95 GPA, unfortunately, I think it would be hard to justify asking for any leeway with grading. Of course, no one has any idea how much suffering it can take for me to get these grades….
I no longer have POTS. It went away after my high-dose IVIG in August, so I don’t even eat extra salt or drink more water anymore!
I’ve made so much progress in every area except my eating disorder, so that’s what everyone (especially my parents) is most worried about. Otherwise, I’m really good now, so hopefully they’re not too concerned. Thanks for the prayers!