Life and lessons as an “extenuating circumstances” student

At the beginning of my sophomore year at Carnegie Mellon University, I began having a myriad of strange symptoms. I developed a tremor in both of my hands, I couldn’t think straight, and my heart rate was recorded to be 170, 180, even over 200 beats per minute at times when I was sitting down doing absolutely nothing. And every time I brought this up to a friend, family member, or medical professional, they all assured me the same thing: it was probably due to stress. No, I had thought. I know what stress is. This isn’t it. Something is wrong with me. I had gotten this feedback so many times that I started to believe that maybe there was nothing physically wrong with me, and that it was all in my head. Once, I had gone to the hospital because I couldn’t catch my breath and was noticeably out of breath just speaking to people. After some tests were performed with no abnormalities, a nurse handed me my discharge papers, curtly saying, “We won’t be admitting you because we only admit sick people.” The culmination of these comments from everyone around me kept me up at night, where I kept asking myself, Am I faking this?

A series of inflection points occurred. My tremors continued, and I was now having problems with my hand-eye coordination. My memory started to get really fuzzy, and the days seemed to blend together. At one point, I asked my roommate whether or not I had gone to class the day prior. She said yes, all of them. I had no recollection of it.

I saw a physician again and received the same response I had gotten so many times before: “You’re stressed, maybe depressed. I can write you a referral to a psychiatrist if you want.”

I called my parents, who I had been keeping in contact with throughout this whole ordeal. I said, “I have to come home. I don’t know what’s wrong, but something is and I’m not able to finish school.” My mother paused for a second, before answering, “There’s only a few weeks left of school. Can you just make it until then?”

Could I?

After hanging up, my mother realized that I was essentially asking permission for me to leave school and come home. She read my mind like only a mother could, and called me back immediately and said to come home.

I submitted my leave of absence form, packed up my room, and was on the way to the airport to fly back home. I cried the whole way there out of frustration, confusion, and devastation that I had just thrown an entire semester’s worth of work away. I started developing hives and rashes with no discernible cause. I could hardly eat because I felt full after a few bites. I was so fatigued that I spent nights on the couch because I didn’t have the energy to make it to my bed. And yet, many times I found myself being critical of my decision to leave school.

Unbeknownst to everybody at the time, including myself, there was a problem. A big one. I had an undiagnosed autoimmune disease, Sjögren's syndrome, which was free to run rampant because it was not being treated. It had mainly damaged my autonomic nervous system, the part of your body in charge of all of the “automatic” functions of your body such as digestion, circulation, blood pressure, etc. Blood would pool in my legs because it wasn’t being circulated properly, causing a significant deficit in the amount of blood and oxygen going to my brain. My brain knew something was wrong, so it would send my heart rate soaring in an attempt to receive more blood, a condition called postural orthostatic tachycardia syndrome (POTS). The lack of blood and oxygen explained a lot of my problems: memory issues, difficulty in concentration, fatigue, lightheadedness, headaches, and more. POTS was far from the only consequence. My nervous system was in overdrive trying to protect itself. It convinced my immune system it wasn’t protecting me properly, so I started having reactions to random foods, materials, and makeup that I never had before (mast cell activation syndrome). It also paralyzed my stomach and the majority of my intestines (gastroparesis).

I saw some doctors at home who were amazing, and some of the first to take me seriously. And funny enough, since they took me seriously, they were able to find the issue relatively quickly. I’m simplifying timelines a bit because it really took a few years to understand everything that was going on, but a noticeable shift had been made in my life once I saw a neurologist and started various pharmaceutical treatments.

I ended up taking more time off school, and when I returned, I could only handle about three classes. Keeping up with my body felt like I was basically juggling a full-time job on top of school. I wasn’t very stable on my feet, so I had to use a walker to get around campus. It was humiliating at times. My friends didn’t quite know how to deal with me, and I don’t blame them. Health problems like the ones I have aren’t very common in young people, so they couldn’t relate to my experiences and didn’t know how to comfort me.

I found a lot of solace with Catherine Getchell over at Disability Resources, who sat down with me to get me some academic accommodations. To this day, I will say the biggest reason I have been able to succeed at Carnegie Mellon is because of my accommodations. To anybody else that struggles with any condition be it mental, physical, or cognitive, I encourage you to sit down and chat with Disability Resources.

But having accommodations came with an unexpected barrier I had to work through mentally. I had been through so much, more than the majority of students will go through at their time at Carnegie Mellon, so why did having accommodations not sit right with me? I couldn’t tell if I felt guilty, ashamed, or maybe both. A new insecurity set in, and now the question I asked myself at night was, Am I taking the easy way out?

It was a ridiculous question in a sense, because I knew that was not the case. I deserved to have the accommodations. It made all the sense in the world to only take three classes. In fact, more than one doctor back home recommended it. But after hearing about the usual Carnegie Mellon stress the rest of my friends were going through and thinking about my greatly reduced stress from taking fewer classes, the occasional joke would be made. Man, I WISH I had your schedule and accommodations. I didn’t blame them and wasn’t necessarily offended by it, but part of me felt like the odd one out because to some extent it felt like I wasn’t suffering in the right ways.

I found myself wishing that I had someone at Carnegie Mellon to talk to that understood me. I had joined several online support groups for others with my chronic illness, but I found it hard to really connect with others struggling in college because I wanted to know people that not only related to my physical symptoms, but understood my context. Carnegie Mellon is a prestigious school full of driven, intelligent, high-achieving people. Understanding the complexities of Carnegie Mellon “culture” was an important component of learning how to walk through student life with a chronic illness. The constant need to feel accomplishment, to feel like I belonged here, is draining for anybody, but it was especially detrimental to my mental and physical health. Am I good enough to be here?

I knew there had to be other students that felt the same way, so in fall of 2018 I reached out to Catherine Getchell and pitched my idea to create a student organization for students with chronic illnesses and disabilities. She was immediately supportive, and connected me to a few fellow students that might be interested in participating in whatever I created. To my surprise, people wanted in! I began holding the first unofficial meetings with some students before Able got its formal recognition from the student government. We all got to know each other, and right from the first meeting I knew that there was something special happening. I didn’t know it at the time, but Able would end up being one of the best things I’ve ever done at Carnegie Mellon, and possibly in my whole life.

After founding Able, I served as president for two years. In that time, I was able to meet with the Dietrich College Council to talk about accommodations in the classroom, had the opportunity to attend the President’s Dinner to share my thoughts about how to include disability in campus diversity initiatives, carried out multiple advocacy campaigns, and, of course, helped execute plenty of fun game nights and social events for our members.

Able has helped me grow in so many ways. It has helped me process and work with my own chronic illness, taught me the importance of open and honest communication, helped me embrace who I am unapologetically, gave me strength to advocate for myself, and ignited my passion for leadership. All of this helped me be a better student, friend, and leader.

At times, I can’t help but feel like my life as a student is nothing more than a series of extenuating circumstances. And I’m working on telling myself that that’s okay. There were so many times where I took incompletes in classes because of my health or turned in projects late, or asked for homework extensions (sometimes after the due date). I’m blessed that most of my professors were always willing to work with me. But when I remember so many of these rushed panicked moments trying to throw work together, I can’t help but feel like I’m not enough or I’m not a good student. It’s ridiculous, but part of me wants to know if I’m good enough to cross the finish line by myself, without help. But if there’s anything I learned in my experience at Carnegie Mellon, it’s that asking for help is okay.

Strength doesn’t come from sheer independence, and it never has. Strong people are strong not because they landed gracefully, but because they made it through something hard. And they survived. Merely surviving is enough. Due to taking classes on a part-time basis most semesters, I never qualified for the Dean’s List. I never had a summer internship because I spent summers at home getting my treatment plan adjusted. And that’s okay. I survived, and that is a feat to be proud of because there were many moments where I wasn’t sure if I would make it through college at all, let alone at Carnegie Mellon.

If I had to leave some last words of wisdom for my friends and peers, one tip would be to communicate as much as you can with your professors. I always took time to sit down with my professors and go over my accommodations, and I believe that’s a big reason why so many were willing to work with me so much. If the class centered around a lot of group work, I would ask to be put in a larger group; this way, if something happened to me and I was hospitalized or had to leave school for one reason or another, it wouldn’t affect my group as much. I’d work out which assignments could be flexible with due dates, and hash out exam logistics. Admittedly, having these meetings every semester can be draining as well as daunting. But they were always worth it! You are your own advocate, and that ability is more powerful than you might think. If you’re juggling with your own health problems, trust your body, even if you keep getting brushed off by medical professionals. You know yourself best, and if you think there’s something wrong, keep trying to figure it out because you are not faking it!

And on the professor side, I urge all of those teaching students to be open-minded and flexible when having these sorts of conversations. Ensure confidentiality by holding these conversations outside office hours, and try not to discuss the details of the student’s diagnoses.

When you’re going through something hard, the only thing you have to do is go through it. Don’t push yourself to be perfect. You just have to make it to the finish line, even if you walk or crawl across it. That is more than enough.