Everyone goes through life with their own perception of the world we live in. Personally, I am an observer. I constantly watch people and try to figure out what kind of life they have had. However, as I get older, I realize there is a lot I cannot see from a person’s outward appearance. What truly made me notice this is when I analyzed the baggage I am withholding from the world around me.
If you saw me on the street, would you know I have a chronic illness? Would you be able to see that I spent most of my final year of high school in a wheelchair? Can you tell how invisible illness has changed me?
My story starts with a bad case of bronchitis during my junior year of high school. To put it simply, I never quite recovered from that infection. Rather, I progressively got worse. I began to experience immense waves of fatigue, joint pain, and loss of feeling in my legs. The worst part, however, was the fact that I began fainting. It started out as once every few weeks but later morphed into almost every day. Eventually, I stopped going to school and spent most of my time in bed. As I moved into my senior year, we still had no answer as to what was wrong. I saw a slew of doctors and specialists, and each one had their own theory of what was causing my problems. Some of them argued it was mental illness while others blamed it on my lifestyle choices, like whether I drank enough water or what I was eating. A few even believed that I was on drugs! Regardless, with no clear answer in sight, my mother contacted the Mayo Clinic where I was able to finally be diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS). This chronic illness is caused by an overall dysfunction in one’s autonomic nervous system, which is the part of your body that controls all the involuntary processes (i.e., temperature control, digestion, blood flow, etc.). In short, the reason I was fainting so much was that my blood was not flowing properly, thus causing my heart rate to rise, which resulted in my passing out.
Although having a diagnosis was great, it was a tough road ahead. I spent a lot of time in and out of the hospital and went to school in a wheelchair. Nevertheless, now that my health is considerably better, I often find myself looking back on how my illness affected me.
One big part of having POTS is the fact that no one knows you have it. If you saw me in public without my wheelchair, you would have no clue that I may have been struggling to stay on my own two feet. This, in itself, caused issues for me. I have countless memories of complete strangers treating me poorly in public just for trying to manage my symptoms. I remember one time in particular where a security guard would not let my parents drop me off at the front of a public beach because I did not “look sick.” These types of interactions were not only disheartening but also detrimental to my safety.
The reason I tell my story so often is not to gain sympathy, but to get others thinking. Chronic illnesses are real things that people struggle with in their own unique ways. Each disabled individual is an individual who has their own specific needs. Even though it may appear “invisible” to you, it is a real struggle for the people experiencing them. Therefore, do not make assumptions about others. Do not question whether their illness is real and do not insert yourself into issues that do not concern you. Instead, show compassion to others and allow disabled individuals to tackle life’s problems their own way.