Zoe’s Story: Embracing Your New Normal

I’m never sure where I fit in the range of healthy to sick. Right now, I feel healthy. I don’t have any symptoms, and the only way you’d know I have an autoimmune disease is if you saw me take my meds. But that hasn’t always been true and won’t always be. My name is Zoe. I’m a junior in college majoring in biology. I have ulcerative colitis.

Let me set the scene. I was 14. It was going to be a fabulous summer, I was helping out at my local riding stable a couple days a week and rehearsing for Hamlet with my friends every afternoon. Then I got sick. At first, it was just a hint of red in the toilet bowl, but soon there was enough blood that the smell lingered after the flush. And I was so out of breath. I couldn’t jog for the life of me and even walking too quickly made me out of breath. At one point early on I tried to mention the blood to my Mom, but she dismissed it as “probably from the cherries” I had eaten. Unfortunately, it was not from the cherries, but I made no further attempts to bring it up to my Mom (I would like to be clear that this was not her ignoring me but a pretty rational reassurance to a kid who didn’t seem sick. My mom is my biggest advocate).

I got very good at ignoring it and hoping it would go away.

As the summer went on I lost a lot of weight and got increasingly tired. Hamlet performances came and went (let’s just say I got very good at managing large skirts and petticoats in small bathroom stalls between scenes). I began waking up several times every night and frantically stumbling to the toilet. School started… (I knew the locations of all the bathrooms on campus and which were the cleanest within the first week).

Eventually, my parents made me a doctor’s appointment. The doctor did a basic check-up and found nothing wrong, but I was too embarrassed to tell them about my symptoms. Fortunately, my Mom spoke up. “She’s been having blood in her poop.” I couldn’t even make eye contact with my physician, I was so embarrassed. They drew some blood, advised me to cut out dairy, and said to check back in a couple weeks. The nurse called the next day and insisted I go to the Emergency Room. I was severely anemic and they were worried I might need a blood transfusion. Luckily, I didn’t, but that ER trip was the first step to seeing the only pediatric gastroenterologist in the state. Several blood and stool tests, and one colonoscopy later, and I was diagnosed with ulcerative colitis. 

It was only after I was started on prednisone that I realized how sick I really had been.

The long slow decline had really blinded me to my symptoms,

so the sudden efficacy of the medications left me feeling better than I had in months. I stopped bleeding. I had energy. I was hungry again.

By this point, I was about a month into my first year of high school. I got my IEP (individualized education plan) around winter vacation, which allowed me bathroom breaks, stop-the-clock testing, and schedule rearrangements. I switched out of P.E. (ever tried to do the PACER test when you’re severely anemic? It’s one of my most embarrassing memories from high school) and was allowed to have an extra study hall.

I would like to say that it was all smooth sailing from then on, but I dealt with flares throughout high school. Whenever I was stressed out, my colitis would flare up. I know that for many people, their autoimmune disease can negatively impact their academic performance. For me, that’s never been the case. My grades did not suffer, but my health did. This is the main reason academic accommodations are so important for me.

I can take a full course load and get good grades, but this level of stress leads to flares.

This is something I still struggle with in college (though I have academic accommodations with my university). I’m torn between my desire to do as much as my peers (take a full course load, get a part-time job, volunteer, etc.) and my need for less stress and a lighter schedule. I wish I had someone tell me when I was first diagnosed that this was normal…

It is okay to need to do fewer things at a time… even when you don’t feel sick.

The second thing I wish someone might have told me is that doctors are not right all the time. I had two seizures one weekend when I was 15. I wasn’t that worried about it because, unlike the symptoms of ulcerative colitis, seizures are vastly more concerning to onlookers than to the ones experiencing them (at least for me). My seizures happened in my sleep, so they weren’t really impacting my life that much. Other than some brain fog and biting my tongue, I was fine. They did freak out my family (to this day, if I start drifting off on a car ride, my brother will wake me to make sure I’m okay).

I saw a neurologist. After an MRI and several EEGs (electroencephalograms), he said that I was fine. While I did technically meet the criteria for epilepsy (two or more unexplained seizures greater than 24 hours apart), my EEG results were borderline, and he didn’t think I was epileptic, so wasn’t going to put me on medication. This was not a very satisfying answer, so my parents and I wrote the seizures off as a side effect of the prednisone I was taking at the time. It wasn’t until I was eighteen, when I had a couple of seizures while not on prednisone, that I went through the whole EEG/MRI process again and was diagnosed with epilepsy and put on anticonvulsant medication. This is so frustrating looking back because I had a couple of seizures a year throughout high school and never sought a second opinion. I never knew that this was potentially dangerous (the more seizures you have, the greater your chances of having another one). I now know that epilepsy is more common in those with ulcerative colitis. Had the first neurologist known this, I might have been diagnosed four years earlier. 

This brings me to the last thing I wish someone told me:

the more you know about your health, the better you are prepared to make decisions and advocate for yourself.

I didn’t really understand what ulcerative colitis was until I looked it up so that I’d be able to explain it to my college roommates. This, in turn led me to reading about the mechanisms of the disease and discovering that there is research suggesting a connection between my two seemingly unrelated conditions (vagus nerve anyone?). I love going down an interesting research rabbit hole, which is part of what led me to choose to major in biology. I wanted to fully understand the research I was reading. 

This past summer, I got the chance to intern with the Global Autoimmune Institute, doing research and writing content on all sorts of autoimmune topics. There is something extremely validating in reading research about your disease and other autoimmune conditions and feeling as if you’re part of something bigger than yourself. I learned that there is a lot that science still doesn’t understand about autoimmunity, but at least people are trying to figure it out. Doing this internship helped me to realize I am not alone and not the odd one out. It has made me more sure than ever that I want to do something to help others with similar conditions. I’m hoping that by sharing this story, I will help someone realize that their symptoms are not something to be embarrassed by, their accommodations are valid and necessary, and learning about their health problems can be empowering, not scary.