Working while chronically ill.

I’ve been sitting here for the last hour trying to figure out a title that best represents how I feel about what I’m about to write, and when I stumbled upon the recent Starbucks arrest of two black men, and how people express experiencing  the discrimination they call, “shopping while black”, I knew I had found a winner.

I don’t write much, anymore. In fact, I don’t officially write anything substantial unless I’m emotionally thrown into doing so. My best work comes from being deeply sad, angry, or hurt in general, and most of it I’m able to vent out on my Instagram page in the 2,200 character limit under each post.

This time won’t be the case.

In addition to feeling like I have more than just a little to say, I think the topic of being sick in the workplace is something that deserves more attention than a drive-by mention. I find this incredibly difficult to articulate most of the time, because I think every person’s situation is dramatically different, and when it comes to health, almost nothing is predictable. And even when it is, how people handle it varies, drastically.

I am someone who grew up looking at my illness as another appendage. I’ve never wanted to stand out because of it; I’ve never wanted pity or special treatment. All I ever wanted, really, was to be given the same opportunities as the person or people next to me who apply the amount of effort that I do.

Which happens to be a lot.

I’m not even talking about the extra effort it takes to be sick AND be a respected employee. I’m not counting the energy it takes me to shower, the money I spend on cabs, or the emotional stress that comes with not ever being able to turn my illness off. I am simply comparing oranges to oranges – which, in the most basic sense, to me, means: does the work get done?

Unfortunately, I can safely say in the adult season of having my career, which is nearly rounding 11 years, my productivity, quality of work, or commitment to my employer have never been what has been the focus of evalution. You can be smarter, faster, more resourceful, personable, and take initiative, but if you have to also juggle regular medical appointments, can’t physically be present for an exact schedule, or are limited to wearing flats instead of “power heels” because sneakers are the only shoes you are actually able to walk in, you will start to notice the trend of training others to move on while you stay exactly where you are.

At this point, I feel it’s necessary to reiterate and mention a few things to provide clarity on what I do not expect from an employer. As mentioned above: I don’t expect special treatment. I don’t expect to be handed an easier path. And I don’t expect it to be acceptable if I can’t complete the tasks surrounding the role I’m hired to do.

With that said, making reasonable accommodations for physically disabled employees is not special treatment. It’s treatment, period. I have as much control over my handicap as someone has over his or her natural hair color.

Next, making reasonable accommodations for physically disabled employees is not an “easier path.” It’s a path. Would an accommodation I receive be “easier” for those without my physical disability? Sure. But it would also be “easier” if I didn’t need to get chemo infusions once a month to do what other people can do just by waking up and wanting to.

Which brings me to the last point. Being chronically ill has never been a choice for me. Has it made me way more badass? Yes. But it wasn’t something I decided to try out for fun. One of the largest problems I face in the workplace is that being physically limited is often translated as “less motivated.” Working in healthcare operations means that you have to be “on” during specific hours, and prepared for when the shit hits the fan. I care more about my career than I do most things, so I have prided myself in learning the intricacies of my profession, mostly thanks to being a patient, so I can plan and coordinate my medical care around making sure my job gets done.

And my job gets DONE.

It shouldn’t matter if I’m creative about how it gets done; the focus should be on the fact that it does. And well. Every time. I empower staff to be strong and independent, so I can trust them to make important decisions, if necessary, in my absence. I build solid relationships with every walk of life in the workplace, so I can expedite issues quickly and without hassle. I make sure that my work is thoughtful and complete, and I do whatever I need to do to make that happen, so the final product is valuable and respected, to a fault. I function through pain meds; I check technology issues in the middle of the night; I have taken work calls while Remicade pumps through my veins on Saturday mornings.

But regardless of all of this, we live in a society that dehumanizes the process of making a living. Don’t get me wrong – I am someone who relies heavily on routine and structure. However, why the hell does it matter if I get to work at 9 or 9:20 or even 11:20, if I am responsive when emails come my way, if I am savvy enough to do my job from a cab (or my bed, for that matter), or if I am blowing past deadlines and submitting content that exemplifies my competence? Why don’t we understand, sick or not, that these are the reasons Americans are so miserable? Life doesn’t happen when we want it to – it just happens. So how can we expect anyone, especially sick people, to be able to work with that?

But don’t forget – if sick people don’t work and submit to the “benefit” (heavily quoted, by the way…) of being on disability, it means they are lazy and not contributing to society, right?

…Right?

So how do we win? I put myself through undergrad with a dual major and minor, and immediately moved out on my own, started working full-time a week later, and began grad school right after that. I completed my 3-year master’s program in 2 years, while working full time, which frankly, is a feat before even considering the fact that I have a debilitating, degenerative, aggressive joint disease. I’m not asking for a hand-out because I had to bust my ass to do it as a sick person; I’m asking to be seen for my professional qualifications – many and most of which my peers do not possess.

And this is where I get really, really, frustrated. I have never been promoted. I have been reprimanded and disciplined for lateness and attendance “issues”, which is really interesting since my work has never suffered. Also, I haven’t taken a vacation in four years. Yes, you read that correctly. I have used all of my sick and vacation time for one thing, and one thing alone: to manage my health. And I’m not talking about unexcused absences, even. It has been years since I’ve called out of work for any kind of illness, which is absurd, since I wake up sick every. single. day. But since I don’t spend my vacation days at the beach, the perception is that I am worth less to the overall organization.

I’m not naive. I understand that people abuse sick and FMLA benefits all day every day. But as a manager of staff, those people are easily spotted from miles away. They call out every time it snows, or rains, or has either of the two in the forecast. Or better yet, they call out every time it’s sunny also, and come in with a nice tan when they come back to work. These are also people who simply say, “I can’t” instead of “I’ll figure it out.” Don’t you think it would be more beneficial for me to get my infusion treatments on a weekday, so I can be better by the weekend? The only reason I do them on Saturdays is to preserve my time at work.

In the four years I’ve been at my current job, I’ve had different managers and have been handled differently between the two. I’m very grateful, because the role I currently have is much more removed from the operation than it had previously been. I have also had the flexibility to work my medical appointments into my day and work from home when exceptions in my health arise. However, I can’t help but feel that the perception from my employer is that these accommodations that I need to function, no, SURVIVE, are acceptable substitutions for being promoted and considered for growth opportunities.

A year ago, I was asked to move into my current role, and I declined. A few months later, I was told I no longer had a choice. I was told it wasn’t punitive.

It felt punitive.

As I do with everything else I have to deal with in my life, I took this opportunity as a challenge. I stepped up. My entire day-to-day changed, along with the expectations of how I would function as an employee. I had never done project work before, and it’s not the job I was hired for. Not even close. But I did it, and with the same enthusiasm I’ve done jobs I’ve actually wanted.

However, all of my peers have moved on (read: “up”) within a year or two of their hire. When discussing it with my manager (who I greatly respect and value, and has worked with me more than any other manager before him has), he reiterated something he says to me often, which is that the “right” opportunity hasn’t presented itself to me yet. I find that really hard to accept, when my feeling is that the opportunity DID present itself, about a year ago, when the hospital I work for needed a project manager. They didn’t recruit for it; they didn’t create a new position and use it as a growth opportunity for someone who had worked hard for it; they laterally moved me and told me I had to learn a whole new set of skills.

The thing that made me most emotional and discouraged about the dialogue surrounding my concern was that there was an expectation that I be grateful for my accommodations (and of course I am – I’ve had horrible managers who haven’t treated me half as well) – but more than that: that my employer’s extension of offering me the things I NEED should satiate my desire to be offered the things I’ve EARNED.

And this has been a recurring theme in my life in so many places. When you have a special need that “easier” people don’t require – whether it’s physical or emotional – we are led to believe that once that need is met, we shouldn’t ask for anything more.

I’ll admit, I’ve been content with this notion for a really long time, mostly because I know what it’s like to suffer. I know what it’s like to feel abandoned by a mentally ill parent; I know what it’s like to be in a marriage that didn’t have passion; I know what it’s like to feel like a slacker, sneaking in and out of work, hoping that I don’t get caught because my meds didn’t kick in fast enough to punch-in on time.

“Be grateful, Beck, that you had mother figures in your life that stepped up when your mom stepped out.” “Be grateful, Babe, that you have passion, even if it doesn’t come with love.” “Be grateful, Rebecca, that you haven’t gotten fired for the issues surrounding your health, even if you do everything in your power to maintain your job performance.”

But if being sick hasn’t stopped me from working towards the life I want, why should it stop me from thinking it’s the life I deserve?

I don’t want to be victimized, nor do I want to be seen as a martyr. I have always owned my health’s circumstance, far more than most people think is natural. But as I’ve gotten older and I’m spinning around the same hamster wheel, it’s becoming intolerable to exist while I watch my peers travel, pay off debts, buy homes, and prepare for a comfortable retirement.

Maybe we should work on the language in the workplace and the stigma surrounding that language, as it relates to people with certain God-given limitations. Why is what I require a “special” need? Why isn’t it just a need? Why is what I require a reasonable “accommodation” and not just REASONABLE? What if everyone who was hired was just looked at as people, and they had to list their needs on paper before starting on day 1, right before they get their ID photo and a locker assigment? A clinician’s list might include a lab coat, a mom’s list might include a shift that mirrored her kids’ school hours, and a physically disabled person’s list might include having a seat near the bathroom.

I’ve never been someone who is overly sensitive about semantics and being politically correct. I’ve always functioned off of the belief that I am a good person at my core, and that intention is everything. But I wonder if putting certain systems in place to “protect” people has actually hurt people worse. I’ve analogized this to not wanting certain medications or diagnoses in my chart, because I know patients are often judged based off of how their medical record reads. It shouldn’t be, but it is. Like anything, there are laws against this kind of discrimination, but it exists.

It sort of feels like a catch 22. Since I’ve always been insanely transparent about my disease and how it affects my day-to-day, it can be used as a weapon against me, intentionally or not. However, my feeling has always been that there is some human component to sharing something that personal, or rather, harder for an employer to be  jerks if they know what I”m going through.

We all have needs.

Being seen past an illness is mine.

 

 

 

 

 

 

 

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