They say that “school refusal,” or a deterioration in school performance, is a hallmark symptom of PANS/PANDAS.
Indeed, with my latest relapse, my grades are suffering, I’m behind in every class, and I have no idea how I’m going to write the two papers that are due this week. College is feeling impossible right now.
My professors have been very accommodating so far, but I get the sense that they don’t really understand why a star-student who looks healthy on the outside is suddenly saying she can’t write a paragraph.
And so, this post is for anyone who doesn’t understand what goes on in the mind of a PANS warrior struggling in school. Though every case is different, and there are many reasons why school and PANS can be incompatible, for me, this is how seven symptoms make doing my work so difficult…
1) Lack of reasoning skills
First of all, my cognitive functions are seriously compromised. It feels like I can’t think. Although I can obviously still write a blog post, if you ask me to write a paper that requires any level of reasoning or analytical thinking, I simply don’t have the mental capacity for it right now.
I’m not stupid—when I was well, I achieved national recognition for my work. The antibodies attacking my brain and causing my symptoms are temporarily disguising my intelligence.
No matter how hard I may try to wrap my mind around new, complex concepts at the moment, or if I try to reach any conclusions about data, I literally can’t. When I try to read my textbooks or consult research journals, despite my usually high level of proficiency in my field, my reading comprehension is so bad that I might as well be reading a foreign language.
If I read things enough times, I can eventually parse the meaning (or at least the gist of it), but it’s extremely difficult to master any new concepts in this state.
2) Lack of concentration
On top of this lack of reasoning ability, I also face a lack of concentration. No matter how hard I try to remain on task, sometimes, I can only stay focused for about thirty seconds.
During my freshman year, I constantly zoned out, and it got so bad that I had to set a one-minute timer whenever I did homework or got ready in the morning/night. That way, I couldn’t zone out for more than a minute, and constantly anticipating the annoying alarm gave me enough adrenaline to focus a little better. But as you can imagine, it’s an exhausting (and therefore unsustainable) way to do your work.
If I were to somehow compensate for these cognitive difficulties, I’d still be debilitated by my depression. I try to do things to distract myself from the depression when things are as bad as they are today, but when I have to sit down and focus on homework, the thoughts come rushing back in…
Thoughts about never getting better. Thoughts about how hopeless my future with PANS might be. Thoughts about what it’d be like to die. Thoughts about wishing it would all end.
How can anyone expect me to do school if my inflamed brain is preoccupied with dying?
If the thoughts leave me alone, sometimes, I’m still too mentally exhausted to even look at my homework. There are days when I literally lie on the floor for hours because the idea of simply moving is overwhelming.
It’s like I’m wearing a lead suit, and every action takes an enormous amount of strength. Believe it or not, I’m far more debilitated by this apparently mental symptom than by the days when I can’t walk (when my legs stop responding to my brain).
I want everything to be perfect, and when I know my cognition is compromised, I know I’m not going to do as well as I normally could on my work—so then I get anxious and too upset about this realization to be productive.
And sometimes, when I’m not having other symptoms, I’m so traumatized by all these years of school with PANS that I needlessly anticipate my homework being a miserable process, so my anxiety becomes a self-fulfilling prophecy.
But often, if I’m in a relapse (like right now), I get terrified or anxious for no reason at all.
I can just be sitting in class, and suddenly, I’m overtaken by an urge to run out of the room. Sometimes I can take some medicine and hold in the panic until class ends, but other times, I simply have to get out of the building.
PANS can make me afraid of being in enclosed rooms (especially with lots of people), so the anxiety I have to contend with while in class can make it impossible to focus on anything my professor is saying.
My OCD has always taken the form of invisible, unwanted thoughts and mental rituals. These thoughts are disturbing ideas and images as well as obscenities. Before I started therapy for my OCD in high school, I would always carry out mental compulsions to “cancel out” the intrusive thoughts, which only made it more challenging to stay focused.
These days, although I can usually resist carrying out the mental compulsions, the thoughts are still there, and they can be so constant and strong that I can’t even “hear” my own thoughts. It’s like something outside of me is putting these horrible things into my brain against my will, all day long.
Imagine trying to do your work while someone is standing next to you, continuously yelling obscene things… That’s what it’s like when I try to do school while my OCD is at its worst.
Furthermore, when I was twelve (when PANS first showed up in full-force), my compulsions involved elaborate rules about how I could or couldn’t say or write anything. For example, if I said or wrote the wrong thing while I was having a “bad thought,” then I would be affirming that I agreed with it—which made me believe I was a horrible person.
Since the thoughts rarely stopped, it became so difficult to follow my OCD rules that I essentially stopped speaking, out of exhaustion—and I refused to do my school work for the same reason.
How could you expect me to sit down and complete an essay if I believed writing something the “wrong” way was going to send me to hell?
Thankfully, I now know that my unwanted thoughts have no effect on what kind of person I am, but they can still be extremely distracting.
6) Tics/chorea movements
When my movement issues were at their worst in my sophomore year, I spent entire classes thinking of little else besides trying to control my tics. Random muscles would jerk all the time, and I didn’t want anyone to notice and think I was a freak.
I eventually figured out that fidgeting usually stopped (or greatly reduced) the tics, but it doesn’t always stop the “urge” to tic. So my tics can still be distracting since I know I’ll have one as soon as I stop tapping my foot.
7) Handwriting/fine-motor difficulties
As a college student, my handwriting struggles are less of a problem since I usually take notes/do work on a computer. However, there are still times when I write by hand, and no matter what I do, I constantly put letters out of order. I usually can see that I’ve misspelled a word, but in the moment, sometimes I have no idea how to fix it—even if it’s the simplest word that I correctly write all the time.
I have to write much slower and consciously think about forming each letter in order to avoid this. It should be no surprise that my heart sinks every time I see a short-answer/essay question on a handwritten exam.
So despite these symptoms, is college and PANS really impossible? I can’t speak for everyone, but as for me, I’m on-track to graduate next month.
Unfortunately, though, there are people who are too ill to be in school, and a few weeks ago, I would’ve said I might not make it, either. However, after four rounds of weekly IV steroids, despite some bad days (and a bad week like this one), my symptoms have become much less severe.
Even though it feels like it might be, college isn’t necessarily impossible. Over these last four years, I’ve managed through a combination of coping strategies, support/accommodations, determination, and having enough okay days to do what I’ve needed; I don’t usually have all of these symptoms all the time.
You can read about some of my strategies in my post, “PANS & College Part 1: Managing Academics.”
As I wait for this week’s steroid infusion to come (after which I’ll presumably be more functional), I have to remind myself of all I’ve managed despite my illness…
If I can survive four years of college with PANS, then somehow, no matter how impossible it seems at the moment, it must be possible to get through the next four weeks… Wish me luck as I try to get through the homestretch!