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I Won't Apologize for Getting Job Accommodations Because of My Condition

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“She only works four days a week and gets weekends off — why does she think she’s so special?”

“Ugh, isn’t she better yet?”

“Must be nice to get all those accommodations!”

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

I hear your muttered comments about everything from my schedule to my breaks. I am disabled, not oblivious.

Please allow me to set the record straight. Those “sweet” accommodations I have at work aren’t a reward for good behavior, a perk of the job that I get to enjoy whenever and however I want, or something I really want at all if I’m being completely honest. They’re a requirement to keep me employed — and yes, they are necessary whether I like it or not.

I have a genetic disorder called hypermobile Ehlers-Danlos syndrome, and as this is EDS awareness month, it’s a perfect time to educate you about this disabling and little-known disorder. The gene that is mutated in hEDS is unknown, but medical science does know that while your body produces strong, robust collagen, it causes our bodies to produce collagen that lacks the strength of yours.

That may not seem to be a big deal, but hear me out. Collagen is the substance that keeps us together — literally. It gives muscles, tendons, ligaments, blood vessels, internal organs and skin strength and elasticity. Most people produce collagen normally, or in other words, it’s strong and elastic. The bodies of those of us with EDS produce collagen that is fragile.

In order to explain it in terms most people are familiar with, think of your collagen as a house. Your house is built on a solid foundation on top of good old fashioned dirt, with the best materials on the market, by a contractor you know and trust. My house’s foundation is built on shifting sand, with materials that aren’t exactly substandard, but are a definite step down from yours, and is built by a new contractor who isn’t very experienced. Essentially, your house is unlikely to have a leaky roof, cracked walls or flood prone basement, while mine can be a morass of structural problems that can’t always be identified without an in-depth inspection.

This fragile collagen can cause a range of issues, from daily joint dislocations and subluxations (partial dislocations) that will degrade joints over time, severe and chronic pain, fragile and easily bruised or torn skin, dysfunction of hollow organs like the stomach or bladder, right up to sudden death. It can also come with varied comorbid conditions, including dysautonomia, Chiari malformation, postural orthostatic tachycardia syndrome (POTS), and fibromyalgia, among many others.

The biggest kick in the pants is that there is no cure. Treatment for hEDS revolves around comfort care — which means pain control, lots of physical therapy, assistive devices, orthopedic surgery if and when required, and always making sure you run a risk vs. reward assessment for pretty much everything. In other words, I’m stuck with this for the foreseeable future, and “getting better” is not in the cards. At the point we’re at in medical science, full recovery from a genetic disorder is just not possible yet.

It is very frustrating that EDS not visible to the naked eye. In order to “see” hEDS, you need an MRI, an x-ray or a physical test called the Beighton Scoring System (to assess joint hypermobility) carried out by a trained medical professional. Along with the myriad of physical issues that come with invisible illness, we also must overcome the challenge of people with medical degrees from “Google University” wrongly labeling us as malingerers.

Don’t get me wrong, Ehlers-Danlos syndrome is not the end of the world, but it sure isn’t a picnic in the park either.

Now that you’ve learned a little bit about my disability, I’m sure you can understand I’d dearly love to trade places with you for a little while. I’d love to remember the sensation of walking without crutches or feeling my hip joints moving around, just waiting for me to step just a teensy bit wrong so they can dislocate. I’d adore remembering the feeling of being able to be left alone in my house for longer than an hour or two, because if I have a major hip dislocation, fall and am unable to get up or to my phone, I could by laying on the floor for several hours before someone found me. It would be amazing to be able sleep all the way through the night without a joint slipping out of place, or the dreaded painsomnia. I can’t even begin to imagine how glorious it would be to not have to live every second of every single day of my life with levels of pain and fatigue most people wouldn’t get out of bed for.

Please understand, accommodations at work aren’t a luxury for me. For myself, as well as millions of people around the world, they are a necessity to keep us in the workforce. They’re definitely not something to envy — as you can see they can come with significant baggage.

Every single person on this earth has challenges. For some of us, like the girl with the seizure disorder, the man with fibromyalgia, the woman with lupus, the man on the autism spectrum, the woman struggling with mental illness, or myself with hEDS, our challenges are mostly invisible, but still a daily struggle. I don’t resent my hEDS — it’s helped to shape me into the person I am today — but some days, it’s very difficult to deal with indeed.

The next time you’re tempted to make a negative comment about someone, whether it’s a different schedule, reduced hours, an assistive device, or if they speak or act in a way you’d consider unusual, please think before you speak. You have no idea of the challenges other people face, even if you can’t see them.

Terry Goodkind once wrote — “Your life is yours alone, rise up and live it.” By utilizing tools like an accommodated schedule so I can be home in the late afternoon when the pain is at its worst, and being home on weekends when I can feel comfortable and safe knowing I’m not going to be left on the floor for several hours because my teenage son is nearly always home. I’m rising up and living my life in the best way I can with the resources I am given — and I intend to keep doing so.

I will not apologize for using reasonable accommodations to stay in the workforce, because people with disabilities and chronic illnesses should never be made to feel guilty for utilizing tools and resources to do the same tasks able-bodied people often take for granted.

All I demand is basic human dignity, and that is never too much to ask.

Getty image by Jacob Lund.

Originally published: May 28, 2019
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