Before the chapter closes on our lives in high school, we find ourselves often connecting with hundreds of new people at our future university.

Graduation is just around the corner and we’re making introductory paragraphs on Facebook Class of 2020 group chats describing what we’re like and what we’re hoping to get out of our college experience.

I was headed off to Clemson University, a school surrounded by beautiful mountains that the outdoorsy folk couldn’t wait to explore. A school with a huge college football presence that even more people were highly anticipating participating in to the fullest extent. Some folks were excited to get out on their own for the first time. Some folks were coming from far away and wouldn’t have any former classmates along for the journey.

Some people were clear in prioritizing studying.

But everyone was engaging and the group chats were flowing more than I’ve ever experienced.

I am not a group chat person, but even then this was an exciting new time full of new beginnings.

I introduced myself as an incoming architecture student and began probing the chats for someone to be roommates with.

Conversations ensued about what kind of room we wanted, what kind of sleeping habits folks had, if they would be studying in the room or spending a lot more time in the library or study lounges. I knew I was likely a homebody who would want to unwind each night in the room and be in bed by a certain time. I knew that I was an early bird as I’d be taking advantage of earlier classes. I also knew that I’d be working on campus so throughout the week, during the day, I’d mostly be absent from the dorm.

I wanted a roommate who would be fun and adventurous. Maybe someone to go to football games with. I didn’t care much for the whole party atmosphere, to me that was something I’d already dragged through in high school and my studies would be my main priority.

It was during this period right at the end of my senior year of high school that my health suddenly plumetted.

I’d gone from taking spur of the moment trips, driving a few hours for a fun spring break vacation, to waitressing full time and almost collapsing on my shifts, ending up in urgent care two Thursday nights in a row. Which would inevitably push me out of my summer job well before summer ended.

That alone was hard to process. This was supposed to the final job to really make sure I was supported during my semesters at college.

Instead my summer because a balance between doing as much as I could to have fun and enjoy my last summer of freedom, to balancing doctor’s appointment after doctor’s appointment and changing drugs at least 5 times hoping to get on a good care plan before being four hours away from my doctor for an entire semester.

Freshman Orientation was the same week I failed my first medication.

It was a horrible, stormy drive up into the mountains and I was slated to be staying with the girl who would be my roommate.

It was supposed to be one of the most exciting moments of my life.

But my fingertips were tingling. My lips and face were numb. My head pain was so beyond intense I couldn’t focus and I was so angry. I had to fake it. I had to fake it in the 100 degree heat and humidity surrounded by dozens of people who’d been in these group chats with me who certainly did not know this sick and uncomfortable version of me.

The days went okay. I struggled to go through the various activities and sit through the seminars but I did it.

The first night before the official orientation went lovely. Me and my roommate decided to stay in and get to know each other. It was quiet, and peaceful, and we talked well into the wee hours of the night. I felt so lucky to have found this person to take on this next chapter of my life with. It really felt like the perfect fit.

It was the “welcome to college” bowling night that truly foreshadowed just how poorly I would respond to what I can best describe as dorm culture.

Twelve hours into our fully scheduled day and we were supposed to all eat food and then head off with our new social groups to a black lit, music blasting, floor shaking, glow stick necklace illuminated bowling party. I arrived a bit late and didn’t last more than ten minutes inside. Everyone seemed to know each other, everyone was doing a million things at once, and a hundred conversations were occurring on top of each other. My brain couldn’t keep up. I was clammy and dizzy and could feel myself moving in and out of consciousness. I couldn’t breathe and I certainly couldn’t keep up the act I’d maintained all day.

I just needed to escape to the cooler air in the now dark outdoors.

I left all of the people I was supposed to be building relationships with and wandered across the confusing campus to the buildings where the parents were housed. As my would-have-been-social-group began making memories and even left on their own accord to explore and solidify their friendships, I sat in a cool dorm with my mom talking quietly about the events of the day.

The next day, I awoke to all the stories of how much fun everyone had and how they were so sad I’d left early and hadn’t gotten to join them.

I couldn’t eat that day. I’d just finished tapering up to my highest dose on my new medication and by now I knew I was having a severe reaction to it.

I was thrilled to go home.

And two months later, I was back fully thrown into dorm culture to truly get the full experience.

An experience that isn’t an option if you’re chronically ill.

Move in Weekend

After having time to get a bit more settled and explore new medications with my doctor, I felt like I was coming in to my first semester with a bit clearer head and more control over the migraines that had stolen my summer.

I got permission to move in a day early, as I had my work study interview the day before official freshman move in began. Everything about move in weekend is exactly as chaotic as its made out to be.

The hundreds of dollars spent on the fun matchy-matchy shit from Target, along with too many suitcases full of things you might not actually need, and of course if you’re me you bring extra shit like your own vanity and giant teddy bear, and odds are fantastic that it doesn’t all fit in the car. Directions are horrible. Campus is confusing. Parking is super duper labeled, but labeled for regular semester use not for move in “new freshman” navigational purposes. And of course, it’s August in South Carolina so it’s hotter than hell.

Thankfully, my parents took the cue as we got everything into my dorm and left me to start my college career. Some parents are sentimental and don’t want to leave, but we were exhausted, my roommate’s parents would be arriving soon and six people, dozens of boxes, and suitcases in a 14′ x 12′ space already equipped with bunk beds and desks is just too much.

As we unpacked, I was met with my first dilemma: Was there a proper way to store my own personal pharmacy?

Aside from my regular stock of “just in case you catch a cold” medicines, I had a variety of drugs for migraines, some of which were controlled substances. I also had some stock of the stronger, definitely scheduled drugs that likely shouldn’t just be out.

We had a nice dorm, it had a full bathroom attached that we shared with the dorm next door – which happened to be one of the floors Resident Assistant’s. A total bonus because RA’s don’t have roommates so the bathroom was only shared by three girls, where most people had four people to each bathroom.

But our RA didn’t have a solid answer about my drugs.

This led to a prompt introduction to the other RA on the floor who was the senior RA. This was a whole lot of health disclosure stuff that I was absolutely not prepared for. Here I was, sitting in the middle of the floor, my pharmacy bin practically being passed around for inspection having to explain exactly why I needed each medication. This went further into having to explain why something like a locked safe isn’t a practical solution.

When you take medications in the morning and at night and you’re used to just having the bottles on your nightstand it’s pretty inconvenient to have that locked up and inaccessible. The same goes for quickly needing access to my abortive medication while I’m symptomatic and likely not in the right head space to try and unlock a safe.

Not to mention, it isn’t like the dorms had safes they were giving out to people for circumstances like this. A safe that would have fit my medication easily would have been a few hundred dollars as well…

Thankfully, the bin I’d brought was solid colored so you couldn’t see the contents inside and both RA’s agreed as long as I kept the bin primarily out of sight and didn’t go around sharing my medications they would allow me to use the container I’d brought.

Amidst the unpacking and prior to classes starting mid-week, there were of course dozens of events scheduled for freshman to be indoctrinated into campus culture. Campus culture is about as dreadful and inaccessible as dorm culture.

I was exhausted and everyone else was super social. I’ll admit, I have never been one to constantly socialize and I was surrounded by people I just couldn’t relate to. Everyone in our social group – the same group from orientation that my roommate had really hit it off with – had come to Clemson because it was their first choice. I admittedly, didn’t even want to go to the university but the scholarship with the best architecture program in the state was hard to pass up. But everyone else was non-stop gushing about bleeding orange and clemson clemson clemson.

My meds never kicked in, I forced myself through various social gatherings, and I was hot and miserable. I was also the only person… not wearing Clemson gear.

Every event began rolling into the next one and after two days I finally gave up and decided to just stay in the dorm for the day and take a breather.

I was the only one who actively had to choose rest.

I missed a lot of things those first few days, including the annual picture where all the freshman wear their matching Clemson gear and head over to the stadium to form the graduation year “2020” and the pawprint with our bodies. Sure, it didn’t hold a lot of meaning to me, but I felt like one of the only 17/18 year olds who didn’t have the energy with my sick body to truly participate in the broader campus culture.

One of the last events before classes started was some big gym party thing where we all met up and then marched down to the large gym where they were handing out goodies or something? I was convinced that this was something I should attend and eventually wound up separated from the main group. Thankfully half of the population of my high school who went to college, came to Clemson, so I quickly wound up with a group of my engineering buddies who I had originally intended on rooming with before discovering co-ed living was not allowed on campus.

And with my high school friends, I didn’t have to pretend. I didn’t have to act extra enthused or go through the extra effort to form new relationships. The relationships already existed. These were people I played beer pong with after prom. And I didn’t feel like I had to hide that I didn’t feel all too great.

There isn’t exactly a guide when it comes to making new friends in college, but I probably would say abandoning your “new friends” in the designated “make new friends” time frame is not suggested. But, there’s not exactly a “here’s how to navigate new friendships with a chronic illness” article that circulates on the Freshman pages.

I don’t doubt that these people who’d attended orientation with, who I now had a firm habit of totally ditching, weren’t super invested in getting to know me either.

The First Week of the Semester

Classes kicked off on a Wednesday and my architecture program absolutely did not ease into the coursework like my other gen-eds did. After leaving our first studio we were sent off with roughly 12 hours of work to complete prior to the next studio… which was on Friday.

At some point I also started my work study job which kept me pretty busy during regular business hours.

This meant that all the homework I was being stuck with would have to be completed in the evenings and at night, and I still had to get into bed at an optimal time. Staying up late and all-nighters are just not options when you’re trying to manage a disease like migraine. Quality sleep has to prioritized.

And since most programs on campus took more of the “we’ll ease you in during this first week” approach, my roommate and the entire orientation friend group were still in first-week-party-get-to-know-you mode. I said no to plans almost every single night and the guilt was overwhelming.

I could feel almost immediately that my roommate was disappointed in me.

Right across the hall from me were two other architecture students, so thankfully we were all stuck in the dorms doing this first big homework assignment. We’d run back and forth to each other’s rooms comparing our work and trying to share ways to make the whole process more effective. And as the week went on and we had more classes together, more organic friendships started to form.

There was only one other kid from the orientation group who was thrown into his work right away too, he was an engineering student. I’d invite him over to work on his stuff while I worked on mine, you know “socialize while you study” seemed to be the only practical way to meet new people.

I didn’t go to the first party that Friday night.

I explained to my roommate that I’d just started a new kind of medication and I couldn’t drink on it, so going to a frat party didn’t seem like a whole lot of fun. I don’t think she understood, but I think that’s the point of all of this, I don’t think she could have understood.

College kids in dorms just aren’t sick.

I’d met some other people on our floor and decided to maybe head over to the We The Kings concert that was happening on the other side of campus.

So I helped get my roommate all dolled up, she even borrowed some of my clothes for the party and off she went.

Sometime over the next week I finally went back out with the orientation group. And again, it’s probably super worth noting that my roommate was from out of state and so we both had a really different experience with friends on campus – I already had a bunch from high school, she was making them as she went along.

But we all went out to Lake Hartwell for some night swimming. The only person who didn’t come was our engineering student friend who was swamped with homework.

It was awful.

These couldn’t have been my kind of people if I’d wanted them to be. Because I’d already spent so much time not participating because I was either sick or trying to get school work done (in case my migraine got worse I absolutely couldn’t procrastinate) I never actually got to know these people. I’d been strung along out of association. I was someone they maybe wanted to know, but I was mostly just someone’s roommate.

I was there because I was adjacent.

And I listened to these strangers take digs at those who were absent, wondering what kind of digs they’d been making at me all the times I’d been gone.

These wouldn’t be my friends.

Dorm Culture, Academic Demands, and Balancing Illness

The semester went on and all of the foreshadowing, the little things I missed out on in the beginning. The constant disclosure of my medical problems. The bad vibes I got from the people around me. They all eventually exploded to create an environment that truly can only be represented in an intersection we don’t talk about.

Where the life we live in the dorms, the way we navigate academics, and the things we can’t compromise on because of our health collide.

I was instantly the person who complained a lot about noise.

I couldn’t wear headphones because the ringing in my ears made that unbearable. We had quiet hours that started at 10 and went until maybe 8 in the morning, but 400 some kids in a building with the only supervision being other kids isn’t exactly a recipe for rules to be followed.

We had upstairs neighbors who would bounce their tennis ball at all hours of the night. The guys next door would leave their tv auto-playing the office so every 22 minutes the upbeat intro music would fill our space with sound all night long. When people would get home from studying at the library they’d continue their conversations in the long, echoing hallway corridors.

Other than a few other people I knew who came from living in their own quiet environments, the constant noise was only disruptive to me.

I had no recourse and trying to ask for people to be quiet just made me into the bad guy. I didn’t have the language or the understanding of my own condition to advocate for myself and I didn’t have any other options.

Other options don’t exist for most incoming freshman across the country. Unless you live in the immediate town, you’re required to live on campus and living on campus means living in a dorm. There are no exceptions made to allow freshman into more independent living options that would address noise concerns. Heck, the only exception I saw being made my entire time there was a really rich kid from my hometown getting “residence” approval since his parents purchased him an apartment in the downtown area.

Being rich shouldn’t be the only way to access a comfortable living environment that doesn’t make your health worse.

And it didn’t stop with the noise.

Because my health always had to come first, my social life was cut into.

It wasn’t long until it was getting back to me that my roommate found me to be insufferable. Not because I spent my time studying. Not because I stuck to a consistent bedtime. Not because I quietly listened to music as I got ready in the mornings. Not because I didn’t click with her friends.

But because I wouldn’t just go get drunk with her. Because I would help her get ready, curl people’s hair from down the hall, socialize while everyone else was getting ready and then wouldn’t ever go to the frat parties.

I apparently became quite the weekly topic of discussion during her biology labs where she’d explain all the different ways I was so very awful for being so very sober, to which she didn’t realize she was talking to my friends from high school.

I had no idea. It wasn’t the perfect fit that I’d thought.

I was devastated. I sat in a Red Lobster and I cried having it all relayed back to me. I thought I was doing everything I could to socialize without compromising my new medications. I thought staying in and helping her get ready was nice. I thought she enjoyed it.

But because I didn’t want to take on a sticky and smelly, beer coated frat house completely sober, I was the monster roommate who this poor girl had gotten stuck with.

I was just chronically ill in college.

I was just trying to navigate a disease.

And it took a single month before I was othered and existed only as that monster in everyone else’s eyes.

Maybe I was the monster.

Or maybe dorm culture was the monster.

There’s so many things I wish I had known. Accommodations I should have known to ask for. Accommodations that should have been available mid-semester or going into the next semester.

They had private suites for disabled students.

But the requirements to even get into them were impossible. They certainly were not considerate of anyone with chronic illnesses, even though they would have benefitted me greatly. But when I asked mid-semester, I was denied. I had a roommate who wouldn’t speak to me because I was an insufferable sick person, but because I didn’t come into college knowing exactly what accommodations I needed, the housing authority wouldn’t work with me.

Because surely illness only changes between semesters.

Surely we don’t learn of our needs in our new environments as we exist in them. We couldn’t possibly need adjustments.

Twenty percent of our youth lives with a chronic illness.

We go to college too.

And a lot of us don’t make it through because campus culture and dorm culture work against us at every turn. They make us into the monsters and demonize us for having the audacity to exist and express our needs. But colleges certainly don’t make any efforts when it comes to access.

And it’s time to talk about it.

A.

This article is a part of an ongoing initiative to bring stories depicting the experience of youth in various settings to the forefront. The goal is to share pieces of my own story to help reach others experiencing the exact same thing and to help create better awareness and allow young adults to feel represented within their respective chronic illness and disability communities.

The people mentioned in this article are merely for context and have been left anonymous intentionally. Being 19 isn’t exactly the time in your life when you understand the complexities of illness and those around you experiencing them, this story is here to share the perspective we just didn’t have then. I wish those mentioned nothing but the best in their personal endeavors. It’s a cultural problem, not a personal one.