What Employers Need to Do to Better Accommodate People With Invisible Illness

In 2003, a tick bit me. I went from a two-sport Division 1 athlete to bed-bound in my childhood bedroom with my mother spoon-feeding me soup.

My immune system never recovered, and for the last 15 years, I’ve fought for my health. My natural killer cell count is extremely low, my inflammation high, and I continue to test positive for various tick-borne diseases and viruses that my body can’t seem to fight.

This complex range of issues manifests itself in extreme fatigue, pain, brain fog, heart palpitations, and air hunger. Some days, I sleep for 14 hours and only leave my bed to use the bathroom. Other days, I wake up with plenty of energy and go on a six-mile hike. The inconsistency makes accommodations difficult.

One of the things I hear most often is, “But you don’t look sick!” I truly don’t — I have no wheelchair, no visible medical equipment and no physical markers. It makes it difficult for people to believe that I am sick and need accommodations. Like most sick people, when I feel the worst, you won’t see me because I won’t be in public.

Working in tech while managing an invisible illness

I have the biggest shit-eating grin in my first-day-of-work photo. I was thrilled to work at a tech platform using my law degree to think about student data privacy and using my people skills to help IT departments roll out tech into classrooms.

My company gave all new employees an intake form that asked a bunch of questions, including about food. I paused at the dietary restrictions, contemplating how specific I should be. I wrote in “dairy and grain free” on the form — not wanting to explain my real needs. I worried HR may think I was weight conscious, or a picky eater, or a trend follower, or worse — entitled. I thought they would assume the diet was a choice. It was not.

Like many tech companies, my company provided family-style meals in communal vats for lunch and dinner. Meanwhile, to combat my ridiculous levels of inflammation and pain, my doctor prescribed the Auto-Immune Paleo (AIP) diet cataloging over 76 foods to avoid. There were simply no dishes in their meal rotation that I could eat safely.

So I spent every Saturday and Sunday of the first two months of my new job doing meal prep for the week. Finally, with encouragement from a fantastic coworker, I told HR what my day-to-day was like and what accommodations would allow me to do better work, feel happier, and stay healthier. They were gracious and accommodating, ordering me a special lunch from a restaurant that offered AIP meals.

During the conversation, the woman from HR seemed hurt and incredulous: “Why didn’t you ask for accommodations earlier?”

Why I didn’t ask for accommodations earlier

Deciding to ask for accommodations is hard. Here are a few reasons why it took me a few months to approach HR about accommodations:

• It’s a long story. Most people don’t know anything about my illness, so, I feel like I have to explain the full story.
• It’s traumatic to retell. Feeling sick can be sad, isolating, lonely, and painful. Talking about it triggers emotions that I don’t want to feel at work.
• Educating people is emotionally exhausting. Educating requires patience and clarity. People sometimes respond carelessly, causing hurt without meaning it.
• We are often doubted or disbelieved. Due to the history of “hysteria” in women and legacy of sexism, I’m often disbelieved. How about we believe women.
• The fear of being viewed as incompetent. I am a cog in the tech world. I am easily replaceable with 100 other people who don’t need accommodations. It is terrifying.

Accommodations that have worked for me

After 10 years of working while managing a complex invisible illness, I have a toolbox of personal care items and accommodations I ask for from employers.

In addition to the food accommodations, my work gave me a special refrigerator shelf for my medications, so it would stay clean and keep my medication safe (I also have my own travel medication fridge).

Like most tech companies, I had a flexible work schedule. This allowed me to attend the approximately 110 doctors appointments I went to last year.

In my personal toolkit, I sometimes wore a hat to block out the fluorescent lights that would trigger migraines. I used specialty glasses and earplugs to block out stimulation.

Of course, someone with mobility restrictions would have vastly different needs than I do. It’s up to employers and employees to sit down and determine what’s needed.

Tips for Employers

It’s estimated that 60 percent of Americans have at least one chronic health condition, and many don’t exhibit any “visible” signs of their illness. Every time I tell this story, people ask what they can do to help their employees who struggle with invisible disabilities.

Here are my suggestions:

• Be proactive: Ask about accommodations on your employee intake form and provide a list the possible accommodations. Askjan.org is a good resource.
• Trust people. Talking about disability is hard. If someone comes forward, believe them, thank them, and listen. There may be a few folks trying to game the system, but let them go. The rest of us truly need accommodation.
• Make time and space. Some people will want or need, to make their invisible struggles visible. Create time and a safe space for that.
• Check-in: For those with ever-changing conditions, put regular meetings on the calendar so you can adjust as needed.

In this historic moment, the nation is starting to listen to and believe those who have been historically ignored. We’ve seen this play out in the social media campaigns of #believewomen and #metoo. These movements are expanding our ability truly hear, empathize, and believe someone’s personal experience.