Life in academia with a chronic and invisible illness - My story

When most people thing of the term "disability", it often accompanies an image of an individual dependent on a wheelchair, crutches, or a variety of other externally visible support systems. A secondary thought, especially among the young Gen Z generation may be those struggling with mental health issues. However, a very looked-over section of disability are those that are physical, but invisible, disabilities (think individuals with Crohn's disease, heart disease, or diabetes). While acknowledgement of disability is certainly becoming much more acceptable in society, I find that a majority of people still have a very difficult time understanding the day to day implications that these illnesses provide.

I, for example, have a disorder of the GI tract called rumination syndrome, which is a chronic motility disorder that causes quite sporadic nausea and regurgitation of food, with little relief from traditional medications. While this is quite a new diagnosis (first really discussed in 1997), it impacts a relatively large subset of certain populations ranging from young infants to adults with compounding disabilities.

Internal disabilities such as mine can cause stress in a multitude of ways, including financially, socially, academically, mentally and so-on. Let me briefly create a common scenario that I was plagued by throughout late high school years and early college years: I would be hit by seemingly endless nausea that felt very similarly to when one is recovering from a stomach flu, in the middle of class, in a social situation, during an exam, even in the middle of the night. This would occur multiple times a day with no explanation and no simple cure. I slept quite a bit, I couldn't consume most foods or alcohol without becoming immediately sick, and I was anxious to be in large crowds.

Not only did I not have any physical relief from these symptoms, but the emotional toll that this played really began to wear on me. I interacted with many professors who thought I was lazy, peers who thought I was contagious, and friends who thought I was flaky. I even had a few experiences of physicians telling me this was "all in my head." Packed lecture halls were now very intimidating due to the unprecedented feeling of being sick, and the diet constriction that involved a strict no-alcohol-consumption rule definitely made me feel ostracized from my dorm-mates.

My last day at Mayo

After about three years of repetitive doctors visits, missing classes, misdiagnoses and multiple courses of treatment, my family and I agreed with the advice of a local gastroenterologist that it was time to go to Mayo Clinic hospital in Rochester, Minnesota.

After a gloomy spring break spent getting poked and prodded by a large team of specialists, I walked into one specific gastroenterologists office to explain my situation. Almost immediately he knew some leading questions that had not yet been asked by various doctors. Within the half hour I had a true, fitting, understandable diagnosis. I was very quickly sent to a specialist who was able to alter my medication routine as well as teach me breathing techniques that are scientifically shown to inhibit symptoms.

One of the most interesting aspects of my healthcare journey is the realization that with diseases such as mine, no one around you knows how you are feeling. There have been many kind friends and family who routinely check in, though in the day-to-day of sickness no one was aware what I was experiencing. I believe this is the most impactful caveats of invisible disabilities considering when my professors or peers saw me, there was no inclination to how I may actually be suffering. While sharing the stories of illnesses or silent disabilities can be intimidating to many because it opens up a vulnerability, it also has the potential to make others who are experiencing the same thing feel a sense of camaraderie.

While someone's daily life may be impacted by a disability such as mine, it is important to note that in no way does that limit their potential, whether academic or otherwise. Being understanding of your family or friends when they explain their own situation is incredibly important, and recognizing that though you may not be able to actually understand what they're feeling, it is simple to give them your support.

To anyone who's currently in the struggle of getting a diagnosis, keep your head up, trust your gut and fight for a fitting diagnosis because no one knows your body better than you do.

And yes - to those wondering - I am feeling much better.

If you are a University student struggling with health issues - I highly recommend the incredibly caring and understanding individuals at Disability Support Services. I suggest contacting your school to see potential accommodations that can be made.