This year, along with the slew of various daily symptoms ranging from an irregular heartbeat to widespread pain, I developed a new symptom that I am ashamed to admit to anyone. I have not admitted it to anyone besides my doctor and my partner. I can barely admit it to myself most days. I am ashamed to say I have dysphagia.
Dysphagia is essentially difficulties with swallowing or an inability to swallow. It feels like my throat has lost all the subconscious mechanisms involved in swallowing, and sometimes leads to me choking on food or drink if I force it. It can be sudden or gradual, momentary or long-lasting. But most notably: I can’t do anything about it. Eating slower and drinking water with nearly every bite helps me along a bit, but I cannot control when my dysphagia decides to act up.
This symptom is especially difficult and sometimes panic-inducing for me because the difficulties I have with swallowing as a result of dysphagia, feel similar to the swallowing difficulties I get from anaphylaxis. As I’m sure most can appreciate, after your throat closes up and you nearly die, anything that causes you to feel a similar sensation makes you freak out a little bit. For years, I’ve worked very hard to quell my allergy anxiety while still remaining vigilant about the food I eat. I’ve done a damn good job getting to the point where I can eat at restaurants or friends’ houses with minimal or no anxiety, and, most importantly, with very few allergic reactions. (The last one that sent me to the hospital was in June 2016, yay!)
However, this new symptom of dysphagia has thrown a wrench in my progress, and I’ve found my allergy anxiety crop up at unfortunate and regrettable moments this year. Some of you reading this were present for these moments whether you knew or not, and some of you were sympathetic while others were not. For example, I had someone confront me, claiming the food must not be “up to [my] standards” at a major family gathering where I wasn’t eating. Torment can be a cruel, subtle beast, and this year my body has been no stranger to it. Combine all this internal and external torment with the fact that I have to take fourteen or more pills everyday—never mind my basic need to eat—and I’ve got an overwhelmingly cruel symptom on my hands.
Not only is it cruel, but it’s also isolating. No one my age that I know has dysphagia, and I’m not sure exactly who would be understanding of it. My internalized ageism constantly pops in to remind me I’m an 80 year old in a 25 year old’s body and how that’s something to be ashamed of. To have a symptom that makes me feel like more of a problem to others, something that both my doctor and the people who love me can do nothing about, and something that will only cause others to a) be annoyed with me or b) worry about me more makes me recoil. I know I cannot do a single thing to fix my dysphagia, but I still feel ashamed of it.
I write this so others might understand, wherever they are aligned in relation to my story, that this is my reality. If you are a stranger, please consider this as something to think about in your relationships with others struggling with dysphagia. If you are a friend or family member, please make space for me despite my new, awfully annoying symptom. Don’t let my coughing, sudden panicked looks or slow eating ruin the fun of dinners, movie nights and so on. Most importantly, if I’m not eating, please just leave me be.