My experience with chronic illness began in May 2018. Ever since then, despite all the doctors visits, tests, medications, etc. it has still been hard for it to feel real to me. The main reason for this has been my difficulty with getting a specific diagnosis. In March of 2019 I I got a colonoscopy. This test was supposed to answer all my questions about my variety of stomach problems I have been having for a year prior. So, you can imagine my disappointment went the test came back with no information. How could my results come back normal when my health challenges have felt like anything but normal? They "diagnosed" me with Irritable Bowel Syndrome, which isn't as much a diagnosis as it is an umbrella term for a cluster of symptoms I already knew I was experiencing. Without a diagnosis there wasn't much the doctors could do. After my hope hope of being back to "normal" was feeling so close, it was suddenly pulled away.
Flash forward a year later. I am at the Epilepsy Monitoring Unit. I experience what are likely seizures twice a week. Now that I am at this important test that was also supposed to lead to a diagnosis, nothing conclusive has come from it. It makes me wonder, is what I'm experiencing even real? Now I know what your thinking, "Sabrina that makes no sense". And you’re right, it doesn’t. My classmates have seen me during these episodes. I’ve been seen glazed over, slurring my words and unconscious. People have told me what I look like during them. They are very much apart of my daily life. Why, then do I find it so hard to believe my reality?
Imposter syndrome is a feeling of inadequacy that allows one to believe they are not deserving of the success they have received. Now you may be wondering how this applies to my health. With this absence of a diagnosis comes an internalized sense of legitimacy. Upon entering the EMU I have heard and seen orients having seizures from down the hall, while I have been sitting in my hospital bed with nothing. It made me wonder are my health problems really that bad? Am I overreacting? Why do I talk about my health problems all the time? There are people out there who have it much worse than I do.
I have been feeling like this for a while now and I don’t know quite how to describe it until I googled “imposter syndrome chronic illness” and was surprised by how many people feel the same way. And it got me wondering, why do so many people that experience chronic illness feel that their illness in illegitimate?
How other people perceive a persons illness can play a big part in how they perceive their own. The main reason it took me so long to go to a neurologist for my episodes is because my teachers would get so frustrated with my “falling asleep” in class. When I tried to explain to them that I couldn’t control it, they dismissed me. It took me 3 years to see a doctor because I had been convinced the problem was my inability to get adequate sleep at night or pay attention in class, rather than a chemical imbalance in my brain.
Another contributing factor is comparison. The amount of times I have compared my struggles with other people is honestly embarrassing. Since when has chronic illness been a competition. My constant thought cycle has been “they have it so much worse compared to me”. While it is good to focus on what I am able to do rather than the limitations of my illness, comparison is not a healthy way to do so. Someone having to struggle with their health in a different degree than me shouldn’t delegitimize my own health challenges.
Labels have always been pretty important to me. In fact, they have been more important to me than I care to admit. A label of a diagnosis usually says a lot about what a person experienced. If I say, “Hi my name is Sabrina and I have asthma,” you would probably assume I have to carry around an inhaler and experience episodes of difficulty breathing. But does this actually say a lot about my daily activity and how my illness effects my life— not really. Although I may not have a label I still have an experience that cannot and should not be defined by a label.
my experience is legitimate and yours is too,
Sabrina
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