Beth Jantz

By

I am sitting in a meeting about a major project. One of my colleagues is proposing a solution to the next big hurdle we need to overcome. I jot down a few notes as she speaks.

As I listen, my rib cage feels like an accordion being compressed by a large, burly man pushing down on my shoulders, with tiny knives stabbing between my vertebrae and ribs. Maintaining my composure, I sit up straight, trying to stretch out my back. I roll my sore shoulders back and down, straighten my neck, which crackles like Rice Krispies, suck in my stomach, and perform a pelvic tilt, trying to restore a neutral spinal position.

“That’s a great point,” I respond, crossing and uncrossing my legs to try to find a position that simultaneously doesn’t hurt my hips, knees or ankles. Pain lances through my right knee. “But what do you think about this approach instead?”

As I talk, the dull pressure that usually sits at the base of my skull blossoms into a hard, aggressive ache pressing down on my crown like a helmet. The fluorescent lights pulse and my vision telescopes slightly. The tinny taste that accompanies nausea grows in my mouth.

Another colleague jumps in with an idea. I focus on looking friendly, engaged and open to feedback as he speaks. I nod and smile, my brain banging around inside my skull like an overinflated basketball.

“I really like that idea!” I enthuse, taking notes. My hands are swollen and stiff, and holding the pen is painful. A cramp radiates from my pinkie and ring fingers through the middle of my palm. I lay down my pen and rub my right hand with my left, then stop because that hurts my left hand. I drape my hands nonchalantly on the conference table to straighten my wrists, which are shooting lightning bolts of pain up my arms.

“Well, I think we made a lot of progress today. When should we meet next?” I say brightly.

Invisible illness carries its own challenges

I am diagnosed with chronic migraines, which means I have a headache all day most days, plus occasional migraines. I also have joint hypermobility syndrome or possibly Ehlers-Danlos Syndrome, which means all of my joints are too loose, causing them to bend too far and hurt. Just for fun, my body threw in Raynaud’s phenomenon, which means my extremities turn white, blue and painful if it gets below, say, 70 degrees.

Most significantly, I was recently diagnosed with rheumatoid arthritis. RA is an autoimmune disease. Every few weeks, my white blood cells team up to destroy the synovium that lines my joints, causing inflammation, pain and permanent damage. This is called a flare.

MORE: Autoimmune and Chronic Disease in Women

It would be a mistake to portray chronic illness as a dominant feature of my life. I am a busy person. I work full time, I hang out with my husband and two cats, I go out with my friends. I cook, I read, I watch Netflix, I play around on the internet. I’m a pretty average 26 year old. But still, my conditions are always there.

Euclid and Pascal

Invisible illness is funny. On the one hand, in the disability community, I am aware of my privilege: unlike people with visible disabilities, I do not face prejudice and discrimination based on my disability. I also do not encounter the same barriers related to the physical environment, technology, communication or transportation that my friends and colleagues with physical, visual or auditory disabilities face.

But invisible illness carries its own challenges. Because my conditions are not immediately apparent, people don’t know to make allowances for my challenges.

Navigating an invisible illness (or illnesses) in the workplace is a balancing act. When should you mention that you are experiencing symptoms? When should you keep it to yourself? I often feel it is more professional not to mention it. In the meeting I mentioned earlier, I wanted the focus to be on the task at hand, not on my symptoms, so I kept my poker face on.

But sometimes, it helps to bring it up. I was in a one-on-one meeting a couple weeks ago with someone who is aware of my conditions. I said something unintentionally harsh. By immediately explaining, “I’m sorry, I’m in a lot of pain. That didn’t come out the way I meant,” I avoided some potentially ruffled feathers (or at least I hope I did).

There is another compelling reason to share information about your illness with your employer. Under the Americans with Disabilities Act, people with chronic illnesses are entitled to the same protections as people with other types of disabilities.

Specifically, the ADA defines disability as “a physical or mental impairment that substantially limits one or more major life activities of such individual,” which includes:

  • Caring for oneself, performing manual tasks, seeing, hearing, eating, sleeping, walking, standing, lifting, bending, speaking, breathing, learning, reading, concentrating, thinking, communicating and working.
  • Operation of a major bodily function, including but not limited to, functions of the immune system, normal cell growth, digestive, bowel, bladder, neurological, brain, respiratory, circulatory, endocrine and reproductive functions.

During a flare, when my immune system is cheerfully hacking away at my joints and I can barely hold a pen or type on a keyboard, I have the right to ask my employer for reasonable accommodations. For instance, Paraquad provided me with a vertical mouse, in this case the Adesso iMouse E10. It allows me to use a mouse without turning my wrist.

Adesso iMouse E10

They also offered to install on my computer Dragon NaturallySpeaking, which is a speech recognition software that would allow me to continue working if I lose the ability to type.

Asking for accommodations at work can be awkward — especially if, like me, you have a hard time thinking of yourself as disabled. Chronic illness ebbs and flows. On good days, I think, “What am I making such a big deal about? I’m fine.” Then the next day, everything hurts and I can barely walk or pick up my cell phone. That is where the ADA comes in: to ensure that, on those days, we have the resources we need to do our jobs.

Beth Jantz is the Grant Writer at Paraquad. She can be reached at bjantz@paraquad.org.

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