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What It's Like Working Full-Time With a Chronic Illness

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For the past four years, I thought my main struggles with chronic illness affecting my day-to-day life would be easier once I graduated and began working. I was still in the process of figuring out what’s wrong with my esophagus, and didn’t fully comprehend how I would balance treatment with work. Being in the “adult world,” without homework or classes to attend, seemed perfectly more manageable to me.

However, I didn’t anticipate my health getting worse as I approached graduation, or needing to have surgery after only a few months at my new job. The initial excitement of landing a great public relations job working with my ideal clients faded, as I began to realize this would be harder than I initially thought.

Living and working in New York City means that commuting on public transportation is a guaranteed part of my workday. I’ve started picking up on who gets up for who on the subway. I outwardly look like a young, healthy person, so people do not always give me their seat. Some do, especially once the subway starts moving and I have trouble balancing. Although I am grateful for the seat, I am always still a little uncomfortable, and do get up if someone elderly or pregnant needs a seat.

The downside of that is my morning commute can tire me out, especially if I am standing for the better part of an hour. I started leaving my apartment earlier in the morning, to give myself extra time to take the non-express train, which is slower but usually a lot less crowded.

Fatigue in general is something I’ve been trying, and failing, to combat. Sitting at a desk all day, staring at a computer screen, with my body desperately needing to lie down, is not fun. I push through, which results in a very tired Ilana by the end of the day. This then means that I prefer to go straight home from work, crashing with Netflix instead of socializing, since I have no energy left at the end of the day.

I also tend to stay at work even when my esophagus is really acting up, because I need to save my sick and vacation days. I am a new employee still, and have a limited number of days I can take off without getting my pay docked. Since I am having surgery in about a month, and am not exactly sure how long I’ll be out for recovery, I am cautious about taking off from work.

While at work, I’ve had to learn how to appear functional even when I feel anything but. This includes eating. On a bad day, eating is pretty difficult, but I have to make sure that I do eat during work so I don’t get lightheaded. This is why I tend to keep a stash of gluten-free, esophagus-friendly foods in the little cubby above my desk. I sometimes get embarrassed about having a mini grocery store at my work station, but it’s worth not having to worry about having food to get me through the day.

In addition to my food supply, my desk also houses a smaller version of the medical supply stash in my apartment. I have extras of my various medicines, as well as throat drops for the constant burning in my throat from the reflux. I’ve also added tea and a bottle of honey to the collection, for when my throat really needs soothing. Even though it’s the middle of August, hot tea is still needed sometimes.

Speaking of temperature, another side effect of my condition and medications is that I am constantly cold. Like most city offices during the summer, mine has the air conditioning on full-blast, making it freezing inside even when it is 95 degrees outside. I’ve been keeping my favorite comfy sweatshirt at the office, but have been considering bringing in my fuzzy blanket for my lap. I’ve seen other people do it here, and I definitely work better when I’m comfortable, so why not?

I’ve had to be less shy about my issues with my esophagus, since I can’t avoid eating during the day, and whenever I eat, I tend to have esophageal spasms which cause me to make strange noises. My desk neighbors have gotten used to it, and are gracious about it, even though some of them still think I’m just sneezing.

I think the most important thing I’ve learned is in order to balance my health and my job, I need to find time to breathe. Whether that is a 10-minute walk outside on a day when there’s no time for a longer break, or, if I’m feeling up to it, a yoga class after work, it makes a huge difference. If I have time to gather my thoughts, I can return to my work feeling refreshed and ready to keep going.

I now know that my experience with my first post-college job is different than it would have been if I was not sick. But this is my current reality, and I am learning to adapt and succeed while taking care of myself.

Originally published: August 17, 2016
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