Commentary: Education around chronic illness is vitally important
Junior photo editor Kalysta Donaghy-Robinson writes about her experience with chronic illness and the need for more awareness and education on the topic. (Noa Ran-Ressler/The Ithacan)
When I was 14-years-old, I was diagnosed with Multiple Sclerosis (MS), a chronic incurable illness that affects the way a person’s immune system reacts to the outer coating of nerve fibers within their brain and/or spine.
MS is a disease that wears a different mask for each individual it affects. For some, it creates mobility issues, dizziness, migraines, fatigue or vision problems. I experienced double vision from the left side of my eyesight for six months before I was finally diagnosed and received treatment.
Now that I have been living as an MS patient for nearly six years of my life, I’ve grown familiar with the autoimmune disease that will very likely be my most constant life companion. Those pesky infusions every five to six months have stopped being so menacing. Instead, they are riddled with repetition and routine; I know exactly where to tell the nurse to put the IV to get the best result, I know how long my MRI will be, I recognize what body part is being scanned and which one I should focus on keeping the stillest simply by the sound the machine emits. I feel like after six years of trial and many errors, I have finally solved how to correctly be an MS patient. But that was not always a label I was comfortable with or understood.
When it comes to chronic illnesses like MS, there is a lack of general education and knowledge. People, especially professors or other individuals in positions of authority, need to be more understanding of illnesses that are often physically undetectable and do not go away after a few weeks. There needs to be an increase in education about chronic illnesses generally, especially in academic settings. The stigma that accompanies ailments that are not physical or visibly detectable needs to lessen.
When I was first diagnosed my freshman year of highschool, I felt out of place with the label of being chronically ill. I had never even heard of MS, let alone understood what it meant to live with it. It took me three different explanations from my neurologist to fully comprehend what myelin was and an embarrassing amount of YouTube videos to understand why it would matter that my white blood cells decided to destroy it. It was horrifying to be thrust into a label and a life I was wholly unprepared for. What was even more challenging was trying to explain my new label to other people.
When I returned to classes full time after missing school and rehearsals for consistent appointments and treatments, it was difficult having to explain to my friends my diagnosis. Many people, much like myself, had never heard of the disease that affects an estimated 0.21% of people living in the United States — the rate of pediatric MS being even lower than that.
I quickly grew accustomed to questions like, “Multiple what?” or, “Is that real thing?” Eventually, I decided to just avoid telling people about it entirely because of this lack of understanding. I tried to make the disease as oppressed as possible, invisible to everyone but myself. In many ways, it worked.
In my earlier years of being an MS patient, I would often have people find out that I was chronically ill and respond with disbelief, pity or shock. A lot of this would happen with teachers or other leaders in academic settings, most recently with some of my Ithaca College professors. Some people would even go as far to say that I couldn’t have an autoimmune disease because I “looked too healthy to be sick.”
Like many other chronic illnesses, MS is not always a visible ailment. My experience with double vision and the toll the diagnosis took on my mental health were never things that could be physically seen or detected from an outside perspective. In fact, some of the moments in my life where I have been at my lowest in terms of health, I have looked the exact same physically; you would never know I was doing poorly unless I told you. There is a lack of education when it comes to illnesses like MS or mental health or anything else that is chronic and doesn’t go away after a few weeks. I’ve had professors tell me that I can make up my schoolwork whenever I am healthy again, but what if you are never going to actually be healthy?
As I reflect on my journey with MS, I find that I am no longer uncomfortable with being labeled as an MS patient. If I could choose to be cured from the illness tomorrow or to never have had it in the first place, I’m not sure if I would. I feel almost grateful for the experience because it has taught me some of my greatest life lessons. It has taught me that the way in which people look exteriorly does not always translate to who they are on the inside or how they feel.
Most importantly, my journey with MS has taught me compassion. It has taught me to be kind to the people around me, but also to be kind to myself. I would like to encourage people to be open to learning and to be compassionate without judgment. For anyone who is struggling with something that goes unrecognized, you are not invisible.