Chronically Employed: When Disability is Not an Option

“Close the door, please.”

It’s usually a pretty small request, but if there’s one thing you don’t sign up for when you’re admitted to the hospital is privacy. Like, forget it. Finally get to sleep? Wake up! Time to take some blood! Have to pee? Someone’s knocking on the door making sure you’re not unconscious on the toilet. Trying to interview a celebrity during the nurses’ shift change? Good luck.

“And so what about being on set? Did you and the rest of the cast have a lot of chances to get to know each other?”

My IV kept beeping and the little screen on its pole continued flashing the words “LINE OCCLUDED – FLUSH LINE.” But no one was flushing anything while I was still on a private line with a primetime celebrity. Besides, if I just held my left hand really still it would clear up by itself. Until then, I was frantically pressing the ‘silence’ button every 30 seconds and holding the phone between my ear and shoulder while trying to type everything verbatim with one hand.

No one said working with a chronic disease was going to be a cakewalk. But compared to trying to win a case for disability when your disease doesn’t include bleeding from the eyeballs, it’s a breeze.

“How do you think your character has evolved since last season?”

If I were going to be honest, I would say that I probably was a quitter. I probably did take the easier way out. When I was diagnosed with Primary Immune Deficiency and Dysautonomia—diseases, which complicated every part of my immune and autonomic nervous system—I thought my career was over. I would have to get on disability. And I was only twenty-years-old.

I applied and I got rejected. I tried again with advice from a non-profit who specialized in the process. Rejected again. When it came down to fighting for round three—I knew I would have to find another way to support myself without government assistance.

So there I was in the hospital, still trying to figure it all out. The nurse burst in without knocking and started to ask me if I needed more medication—I threw my IV’d hand up and mouthed “CAN’T TALK—WORKING”—sheepishly lowering my arm after I almost jerked the plastic catheter out of my skin.

I’d spoken with a Facebook friend who lived in Ohio. She’d had at least six brain surgeries that year and couldn’t walk anymore. She spent most of her days getting spinal taps to drain fluid from her skull. She was denied disability and needed more time to recoup financially before she could even think about trying again with a lawyer. So I’m not exactly sure who or what qualifies you for support, but the universe was pretty much giving her no options but to slap a band-aid on her scalp and start sending out resumes.

My interview wrapped up with a lot of thank you’s and apologies about my slow-typing. I hung up the phone and tried to air the sweat out from underneath my arms.

The nurse came back in and started pressing buttons on my IV. My line is filled with bright red blood, but with a few more clicks everything turns clear again. I sunk back into my bed, making a mental note to add one of those travel-size sticks of deodorant to my hospital kit.

“Working when you’re in the hospital?” The nurse asksed. “You should take this time to relax and heal.”

Which is like, totally zen and wholesome—but I had a dog with food allergies who needs a specialized organic kibble. And my AMEX bill for last month? Let’s not even go there.

It’s different for the chronically ill. There are no sick days, no paid time off—they are all sick days. There is no “welcome back, glad you’re feeling better.” There’s just absence, and a whole lot of unemployment.

And after a while, you just get tired of wondering if today is going to be a good health day or a bad health day. So you make the decision to expect all days to be bad health days and start changing the design of your life to handle the impact.

Two story houses turn to one. Romantic date nights out become Netflix marathons and take-out. College and career stop looking like classrooms and boardrooms and start looking like Skype sessions and FreeConferenceCall.com.

And once I started working for Global Genes—an international non-profit focused on rare diseases—I started getting stories just like my own from patients daily.

They were sick, but weren’t getting the support they needed. I started wondering how many other patients on my floor were mixing flare-ups with full-time telecommuting? And when I asked the rare and chronic disease community for their solutions to life-interrupted I was admittedly pretty blown away by the response I got.

After doctors diagnosed her with an acquired brain injury, Encephalitis, from a mosquito bite, it took 38-year-old Becky Dennis a full 27 months to understand the impact of her health on her career. It was a time in her life that called into question her creativity. She found ways to work around it.

“If I had to conduct a briefing, I scripted it out. If I had a business dinner, I brought a colleague and compared notes afterward to ‘borrow’ their memory. I carried a notebook with me everywhere to jot down items I needed to remember. I scheduled meetings around my numerous doctor appointments, blocking my calendar to appear otherwise busy,” remembers Dennis.

Crohn’s disease patient Lori Karpman was among the many who had to have a complete career change post-diagnosis.

“I was the president of my own chain of franchised restaurants,” says Karpman who now works from home as a business consultant. “I have a very successful business, but I have to be at home because I have stomach cramps every morning and often throughout the day and need to be near a washroom. My whole life has changed, and I have a new ‘normal’ now.”

The Global Genes series ushered in mountains of feedback from patients who read their stories and felt relief. Long lonely roads of disability and isolation warped the possibility of a normal life. There were pieces to be moved around but what is that quaint little saying?

“Adapt or die.”

I knew there must be a way to circumvent the symptoms of my disease—just like anyone would supplement for a lack of education or experience. The trick was being persistent and aggressive.

Once you’re a patient with a chronic illness it can consume your identity. You spend so much time and energy devoted to just feeling better—you can’t imagine being anything more than what you’re struggling to manage right now. You think, I can’t be a mom or a wife or an employee. You think, I can’t do it.

But the plain, verifiable, quiet—but rarely said fact is that people do.

It’s happening in the waiting room on an iPad in-between filling out insurance information. It’s happening on a conference call on a treadmill in physical therapy. It’s even happening to a girl in a hospital bed drafting up an article while waiting for an IV line to be reset.

Is this the answer?

Should people who are genuinely ill in ways that would be incomprehensible to the average employee still be pushing themselves to work? I wish that were the question for the millions of Americans straddling the line of unemployment due to a chronic condition.

But it isn’t. For many, they’ve already submitted their disability request to no avail. We’re adapting because we have to. The question we must ask ourselves now is: how can we adapt our work environments to use the best part of ourselves without inflicting more pain and suffering on our already exhausted bodies?

For me: the biggest part of the equation was finding worth work doing. If the passion wasn’t there, there wasn’t enough to push me past symptoms and fatigue to do the job. The second part was finding work-from-home jobs that fit around my schedule. And the final part was working on quieting that little voice in my head that went back and forth between you aren’t doing enough to this is too much to handle.

If you’re struggling with balancing work, life and chronic illness check out these resources below and do your part to speak about being #chronicallyemployed. We all have value and deserve to find the career path that speaks to us and accommodates us.

Visit ChronicallyEmployed.com

Watch my WEGO Health webinar on tips to make your work day easier with a chronic illness.