My chronic illness, my work identity and what organizations can do
I call myself an accidental Jewish professional. I volunteered at an organization, Friends of the Israel Defense Forces, and fell into a job there while still in college. Graduating in the middle of a financial crisis, I jumped at a full-time offer at the organization. It was there that my love of the Jewish nonprofit sector bloomed. It was also there where I learned that my organizational skills, quick turnaround time and trusty highlighters were a perfect fit for a career in operations. Throughout my time at various organizations, I was able to lean on this while doing something I loved: being the thread across different parts of an organization and helping to hold everything together.
Such was the case three years ago when I was lucky enough to join the staff of Leading Edge, an organization with a mission I hold dear: making Jewish nonprofits better places to work by supercharging culture, diversity, leadership and treating each other as full human beings.
But soon after I joined the team, things started to change.
Suddenly I couldn’t remember things with the same clarity. Typos and missed details crept into my work. I had to reread instructions over and over before understanding what to do. Some people may not see this as a big deal, if that’s been their past experience, but that was never me before. When submitting my application to the Amazing Race, one of the skills I listed was “Can decipher Ikea instructions with one glance.” (Still waiting for them to call me…) Color-coded files, the ability to anticipate the needs of my team, these were not just things I happened to be good at, but things that made up the entire basis of my work identity. And now they weren’t working. I now needed to work twice as hard to do things that were half as efficient.
I first attributed these changes to being part of an extremely talented group that was in a period of growth and change. Yet slowly the impostor syndrome crept into my mind. Maybe I was just not good enough. Did they make the right decision hiring me? Had my entire life up until this point been a sham?
But it didn’t stop there. I was getting sick. A lot. And each time, it would take me much longer to bounce back. I went to general physicians and specialists. Each gave me a different diagnosis and spun me into a tornado of unanswered questions.
Enter the flaming dumpster of a year: 2020. Along with the small stressor of a global pandemic, I noticed even more cognitive issues. I would freeze and stutter trying to recall a simple word that I had used a million times. I would sometimes forget how to do everyday things, like use the coffee maker or dishwasher.
And then there was the pain. I couldn’t walk more than a block without being in agony or needing to sit down. My body felt like it was being weighed down by a lead blanket. Muscle spasms, joint pain, migraines, exhaustion, one thing after another piling up and up.
It was when I lost vision in my left eye that I realized something was seriously wrong.
After about two years of searching for answers, I finally received a more certain diagnosis: Relapsing Remitting Multiple Sclerosis (RRMS). I can’t quite describe the roller coaster of emotions that hearing this diagnosis unlocked in me. Relief that I finally knew what was wrong immediately turned to terror. MS is an incredibly individualized disease and everyone is affected differently. But one thing is certain: there’s no cure.
How could I hold my organization together if I could barely hold myself together? How could I be the thread across the organization when I’m all tied into knots? My work identity was gone.
Asking For Help
I needed to adapt, but had no idea where to start. I was overwhelmed, exhausted and terrified of losing my job. I read horror stories of people struggling with MS who could no longer work or were fired. Stress is a trigger for flare-ups, so I was trapped in a cycle of anxiety, depression and physical pain. Here’s the part where I say something that, sadly, is not a very common phrase: I love my job. And beyond needing to make a living, the thought of no longer being a part of my team was disheartening.
I am not one to ask for help; I’m the one folks go to when they need help. But my supervisor, who during this entire ordeal had been patient, empathetic and kind, went above and beyond to help me navigate this seemingly impossible terrain and pushed me to take care of myself. I was also overwhelmed at home. My wonderful partner had to take on more and more things that I could no longer do. That dynamic flip in both parts of my life made me feel weak and useless.
But that’s not the reality. The reality is my body is not working properly. And here’s another reality: everyone needs help. In one way or another, at one time or another, in big ways or small, all people are vulnerable and need support. The amazing leadership at Leading Edge made it clear that it was okay to ask for help. I was able to take a medical leave to make my health the priority. Since returning, I have transitioned into a new role in the organization, putting new emphasis on some of my strengths that I hadn’t used quite as much in the old role, and relying less on some types of workflow that had become more difficult. Leading Edge also provided me with a professional coach to help me understand my new brain and how to use it efficiently.
Asking for help is a vulnerable, often terrifying thing to do. And taking time off to heal and just rest is an entirely foreign concept in too many workplaces. But for me, it was exactly what I needed—and for other organizations, how many people out there are struggling with a health challenge, physical or mental, and are reluctant to ask for help?
One thing the COVID-19 pandemic has done is normalize discussing illness (visible or not) within the workplace. The disease has not only caused an enormous amount of short-term illness, but also a new kind of chronic illness (Long COVID). It’s a tricky topic that we are all still learning how to navigate. In the U.S., six out of ten adults have a chronic illness and four out of ten have two or more. It’s important to know your own limits, but it’s just as important to notice them in others. Managers need to learn how to toe the line of providing support without overstepping personal boundaries.
Here are a few simple first steps to consider in your organization.
Signs to notice:
Increased absenteeismDips in job performance and productivityDisengagement Cynicism or sensitivity to feedback
What to do:
Have a conversation. There could be a number of variables behind a shift in an employee’s job performance or attitude. A simple “You are valued here and we want to help” goes a very long way. Making room to have these conversations in a safe way can alleviate fears and open a new path forward. Make room for empathy. It’s easy to become frustrated and assume that an employee is making excuses. But patience is something I wish everyone could have a little bit more of when it comes to dealing with chronic illness. Trust me: we are harder on ourselves than anyone else could ever be. Ditch the toxic status quo. As a society, we’re slowly coming to the realization that success in the workplace is not determined through a one-size fits all metric. Taking time off is not a measure of a “bad employee.” We’ve all learned about burnout this year, and the repercussions of identifying it after it’s too late. Great employees can go through not-so-great times. They should be allowed time to heal, and rest. They will truly appreciate it. Pivot. It’s not just something you shout while carrying a couch up a flight of stairs with your friends. Even if you’re not affected by an illness, sometimes your career path takes some unexpected turns. My pivot was to go from operations to communications. Allowing an employee to identify the skills they have—and their core strengths that may help them develop new skills to evolve in their job—can make a huge difference.
Everyone’s journey through chronic illness is different. I’m still at the beginning of mine, but I feel so lucky to be at an organization that strives to lead by example and treat our employees as full human beings.
Most importantly, if you are dealing with a chronic illness of any kind, allow yourself to grieve. Grieve the life you had or thought you would have. Grieve that piece of yourself that was lost. You didn’t choose to have this illness, and you are not alone in your journey.
Marisa Diehl is senior communications associate at Leading Edge.