I'm Chronically Ill. Please Don't Make Me Come Back Into the Office

Photo Credit: cuttingtool/Shutterstock

I remember an especially hard day of work. It was in the summer a couple years back and I was about a year out from my latest abdominal surgery. Even before the pandemic, my job required a lot of recorded video calls, so oftentimes my colleagues and I would have to find private rooms in which to conduct them. On this day, my chronic pain was flaring up so badly that by late afternoon, I was reaching my breaking point.

As I sat in the private phone call room, desperately trying to forward the conversation, I began to realize that I wasn’t going to be able to continue. The pain was too much. But I had tried for days to get this person on the line, so I couldn’t exactly drop the call. “I’m having an issue with my camera,” I lied. “I’ll need to turn it off, but please continue.”

I turned off my camera and slid to the floor of the 5 by 7 private booth, taking my laptop with me. I curled into the fetal position and moved the laptop by my head. “That’s interesting,” I said in a cheery voice, following up with a question. I finished my call, laid for another minute, stood up, wiped the dirt from my dress and the tears caused by the pain from my eyes, and returned to the office as if nothing had happened.

I suffer from something called pelvic floor dysfunction.

While this was an example of an especially hard day, it is by no means an isolated incident. I had my first abdominal surgery my freshman year of high school, when I was 15, and I’ve suffered from chronic pain and health issues ever since. I had another surgery two years later to correct problems caused by the first one, then two more subsequent surgeries over the next decade and a half to, in large part, correct problems caused by the previous surgeries. My fourth surgery would be the only successful one of the batch.

Because of the issues, largely the scar tissue issues, from these surgeries, I suffer from something called pelvic floor dysfunction. Basically, the muscles throughout my pelvic area, including my hips and abdomen, as well as other more, ahem, delicate areas, don’t function as they should and need to be manually stretched out in order for me to be able to sit, stand, walk, use a tampon … you know, basically to function. That means I have to go to physical therapy on a weekly basis to have these muscles stretched; otherwise, I can’t perform the basic functions that I need to live. This is in addition to the maintenance stretches that I have to perform daily to enhance and advance the physical therapy. Oh, and did I mention that pelvic floor physical therapy is incredibly painful and necessitates a huge amount of invasiveness because of the location of the pain and the techniques needed to treat it? Essentially, my therapist has to wear me like a puppet several times a month, if you get my drift. Luckily for me, I go to the best PT in the biz, but that still doesn’t make it easy. The physical and emotional toll that pelvic floor dysfunction can have on a person is a lot to deal with.

All that being said, medical intervention and physical therapy are nonnegotiable if I want to live anywhere near a normal life. Before I had my last surgery and prior to starting physical therapy, my life had kind of fallen apart. I was in pain 100% of the time, unable to sleep, and just barely able to do the minimum required of me to complete a day of work. My career was faltering and my personal life was whittling down to nonexistent as I constantly turned down social invitations to stay at home, curled up in a ball on my couch. I couldn’t be physically intimate with anyone so a relationship was out of the question. I felt so alone.

I had had to make a career pivot due to my chronic illness. Where once I was a producer/field producer for reality TV, now I didn’t have the physical stamina to fly around the country every other week, or to be on my feet on set for 15- to 18-hour days. I had spent years working my way up to my position, only to be physically incapable of keeping it once I had reached that point. I needed a job where I didn’t have to travel as often or have to be on my feet as much. It was devastating.

Flash-forward to that day a couple years later, and it comparatively didn’t seem so bad to me. At least every moment of every day wasn’t like that anymore. Now, you may be wondering why I didn’t just tell my bosses that I needed to go home early that day. And it’s true, the heads of the company I was working for at the time were definitely caring and empathetic to my issues, so I’m sure they would have let me go home. But there are a couple reasons why I didn’t.

When you’re chronically ill, not only do you have the pressure to work twice as hard to make up for any allowances you may eventually need, you have to be 100% certain of the allowances you ask for.

My career was finally back on track and I liked that my bosses could see how dedicated and, I’m just gonna say it, talented I was. I wanted to leave that impression in their minds. An unfortunate reality that you deal with when you’re a chronically ill person is that if you actually took off the amount of time that you needed for yourself to truly be healthy, you would earn yourself a bad reputation at most places. I had had that happen before at previous companies. Ask to work from home the odd day here and there, ask for time off to go to your biopsy, leave 20 minutes early to go to physical therapy — all of those small but necessary asks tend to add up in their minds, even if they have no legitimate impact on your actual work.

People are, well, only human, and it’s hard for them not to associate a sick worker with absence or requiring too many allowances. Bosses want to hire people who they feel can take on the amount of work required and then some. And sadly, many people will dismiss a chronically ill person outright as not being able to handle it. After all, why invest in someone who has the potential to be a risk when you could hire someone who doesn’t have that baggage?

When you’re chronically ill, not only do you have the pressure to work twice as hard to make up for any allowances you may eventually need, you have to be 100% certain of the allowances you ask for. They have to be the most dire of situations; otherwise, you’re going to face some consequences. Six weeks after my especially hard day, I faced some of my own. The subways were running even later than usual, so both my coworker and I arrived around 20 minutes late to the office. I walked in and my direct supervisor was pissed. They dressed the two of us down for our tardiness, and then it happened: “And you with your physical therapy.”

The words cut through me like the many scalpels that had sliced through my flesh before. I had had to miss an hour or so of work for physical therapy around three times in three months — once, when I missed my appointment when I was working late of my own volition and had asked permission from my bosses to take the next available appointment in the morning, and a couple of times when I just hadn’t been lucky enough to score one of the five highly coveted appointments that were available after 6 p.m. each week at my PT’s office. For someone who goes to physical therapy on a weekly basis, that’s not a bad average.

I had done everything I could to avoid that moment. Not gone home when I felt like my body was ripping in two. Not gone to necessary doctor check-ins for fear of missing work and earning a bad reputation. Missed actual physical therapy appointments. I had worked long hours that were hard on my chronically ill body and put in the best effort that I possibly could to revitalize a career that had been tanked by that very body. All of that work was undone by those words. “And you with your physical therapy.”

I tried to push past the feelings that were bubbling inside, but about an hour later, the tears started to well up as I sat at my desk. I excused myself to the bathroom, locked myself in a stall and promptly burst into tears. I was hurt, I was angry, I was frustrated, but more than anything, I was exhausted. I was tired of having to cause permanent damage to my body and of not giving myself the best care possible because I had to worry about the judgment of others and how that would affect my paycheck. And without a paycheck, how could I even pay for my health care? I was already $40,000 in debt from medical expenses combined with not being able to work for the better part of a year. My illness had put me years behind my peers when it came to being able to buy a house, and maybe even start a family. I was so damn tired of putting in as much of my time and effort as I possibly could to a job, only to have my contributions boiled down to the one thing I asked for in return.

I took a picture of myself in the stall as a reminder that it was okay to reach this breaking point. It was okay that I finally had a breaking point. Then I ate a strawberry milkshake for lunch.

If you can’t tell, working from home has completely changed my life for the better.

During the pandemic, my work life has changed dramatically. As someone who was lucky enough to keep working throughout the global crisis, I have been able to do my job 100% remotely from home. And, oh, what a dream it has been!

Now, when I have a pain building that is so overwhelming that I can’t concentrate, I can literally just lie down on my couch for 10 minutes to catch my bearings. If that doesn’t help, I can take five minutes to do some physical therapy stretches. And, if both of those don’t help, I can sit at my desk pantsless with a heating pad soothing my abdomen underneath a blanket as I continue to complete my tasks. If I forget to take my medicine (which I need to digest food), I can inject myself with it as soon as I remember. Yes, it’s a daily injection, because everything in my life just has to have that extra bite of pain, really.

Need an allergy pill or an Advil? Why, they’re a few steps away in the medicine cabinet! Thirsty? I can go make a cup of coffee and not have to pay $7 for it. Oh, how novel! And when my chronic nausea creeps in, I can go to the other room and make myself a cup of mint tea or grab a ginger seltzer from my stash.

I’m even more willing to work longer hours, simply because I can do so from my own home. I can wear comfy clothes that don’t restrict my body. I can choose a seat that doesn’t aggravate my pelvic floor dysfunction, so that means I can sit at my desk for more hours without causing a pelvic floor spasm. At prior jobs, the hard computer chairs would cause me to want to flee the scene as soon as possible. Or, if I was forced to work overtime, it meant that I was punished by my body for about two weeks with pain, swelling, and the aforementioned spasms.

Even if I have to work long hours on a project from home, I can still go into the other room for a five-minute break to see my fiancé, instead of just never getting to see him that day. It’s the relationships in our lives that can give it the most meaning, so earning more face time with the love of my life is a bonus that can’t even be quantified. And, when I’m finally done with whatever project has kept my free time at bay, I don’t have to worry about an aggravating commute. I can run right into my fiancé’s arms and salvage however much of the night we still have left.

If you can’t tell, working from home has completely changed my life for the better. My body is healthier in ways that it hasn’t been in years, possibly ever. As a result, my mood is significantly better. And, as a result of both of those things, dare I say, my work has improved.

Now that we are on track as a country to have enough vaccines for everyone by the end of May, a lot of companies are discussing how to make the transition back into their offices. “Please, dear God, no,” tends to be the overwhelming response to that idea. Even many of us who are not chronically ill have seen our lives improve. No commute, the ability to customize your workspace, a chance to eat lunch with your spouse (or even just eat lunch in general), more time for yourself and your loved ones. Why would anyone want to give that up?

But for those of us that are chronically ill, the consequences are much more dire. We’ve had a taste of how close to normal our lives can actually be. Please don’t make us give that up. Please don’t make us come back into the office.


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