Hey there. My name is Rachel and I’m a full-time senior product designer, mom, and “spoony.” Some of you might be wondering, “What is a spoony?” I’ll explain.
The Spoon Theory
“The Spoon Theory” describes the experience of living with a chronic disease or illness, with “spoons” representing units of energy available to those people over the course of a day.
The theory states that healthy people’s energy supply doesn’t significantly diminish over the course of a day. However, a “spoony” only receives a certain number of spoons, which can vary day to day. Every activity (like getting out of bed, figuring out what to wear, commuting, etc.) will deplete the spoon supply. Often, spoons must be rationed to avoid running out before the end of the day.
As you can imagine, this means that many people living with chronic health conditions struggle on a daily basis to make sure they can get through the day without being utterly burnt out. I am certainly no exception.
“But You Don’t Look Sick”
When I was 11 years old, I was diagnosed with severe Crohn’s Colitis, an autoimmune disease that primarily affects the gastrointestinal tract. By the time my doctor made the diagnosis, I was nearly septic and had turned to skin and bones. He explained that I would have this disease for the rest of my life and it would be a very hard road ahead to find a combination of medications to put me into remission.
From that point on, I quickly learned that I would have to adapt in order to “keep up” with my peers in my social, educational, and eventually professional worlds.
Early in my career, I made a point to hide my disease the best I could. I feared that revealing the true seriousness of my condition would prevent me from being hired or would cause my team to label me “lazy” or “unproductive.” I spent the better part of the last decade only telling human resources and my direct manager, and trying to reassure them that I would not let my disease get in the way of my work.
Trying to conceal the severity of my condition and make up for any times that I was not feeling well eventually led to a very unhealthy relationship with work. As a career-focused individual, I would often overcompensate for my limitations by offering more and more of myself to prove that I was, indeed, worthy of having been hired.
A sad but true fact is that, in the past, I had worked more days from a hospital bed than I have taken off for vacation in the last decade.
Working While (Chronically) Sick
“In a 2004 study of patients with moderate to severe Crohn’s, full-time and part time employment rates were only 48% and 13%, respectively.” Journal of Clinical Gastroenterology
I did not want to be a statistic, and refused to let my illness define the course of my life. But instead of proudly sharing that I was beating the odds and excelling in my career despite the daily struggle in my personal life, I continued to downplay my condition to my managers and coworkers. I did not want to be labeled “the sick girl” or treated differently.
It wasn’t until I started being reprimanded for using “reasonable accommodations” that I realized that I had to make a significant change in how I shared my experiences in the workplace. Unfortunately, trying to downplay my illness worked too well. When I was too ill to hide my symptoms, I would be accused of exaggerating or of taking advantage of the work-from-home policy.
In fact, I was once told by my manager that I looked fine in all my pictures on social media, where I appeared to be enjoying life, smiling, and socializing. Translation: “How could I POSSIBLY be so sick if I look so happy and active in my Facebook pictures?”
Another time I was told that despite giving months of notice, I was inconveniencing my boss by having my colon removed. I was expected to be working within two days of my surgery.
“You may believe I am faking being sick, but I am actually faking being well, and people need to not be as quick to judge.”
How to Create a Supportive Workplace
Whether they have disclosed it or not, the chances are that several of your co-workers have an invisible illness.
According to the Survey of Income and Program Participation (SIPP), nearly one in 10 Americans have a severe disability, and 74 percent of people who suffer with a disability do not use a cane, wheelchair or any other visible aid.
So, how can you be more supportive of your teammates living with disabilities, with or without knowing if they have an invisible illness?
Try to avoid making assumptions about someone’s behavior
Some individuals are more open about their invisible illnesses, while others, like I once was, try to keep quiet about it
You should never assume that someone is “healthy” and capable of all of the same things you are mentally and/or physically. For instance, you might have no problem walking two miles for lunch with a client but your teammate might struggle to walk across the street and will need to take a cab.
Or when your coworker seems tired or appears to be zoning out, don’t assume that they’re being rude, lazy, or “just need to go to sleep earlier.” Brain fog, chronic fatigue, or the mental fatigue of trying to appear “fine” can take its toll on anyone.
If you’re concerned about a coworker’s well-being based on their behavior, bring it up to them genuinely and tell them you are there for them.
Be careful what you comment about
When you find out about someone’s disability, some of the things you might want to say could be unintentionally hurtful.
Here are some things you should avoid saying, and why:
“At least it isn’t cancer.”
While some conditions are more physically obvious or are more lethal, living with an invisible illness can feel misunderstood or belittled.
“Many chronic illnesses are not terminal conditions, but they can severely impact a person’s quality of life for decades.” - Counseling Today, Cathy L. Pederson and Greta Hochstetler Mayer
“You look great. Have you lost weight?”
While it is probably meant as a compliment, commenting on someone’s physical appearance is never a good idea, especially in the workplace. Sometimes, weight loss or gains are actually a sign of worsening illness and can be a very touchy subject.
“For someone who is chronically ill, even hearing “you look good” might be equivalent to “I don’t believe that you are really sick.” - Counseling Today, Cathy L. Pederson and Greta Hochstetler Mayer
You’re sick/out of the office a lot.”
Yes. We are aware and likely are stressed about it.
“I had no idea, you look so healthy/happy!”
After the first part of my colectomy surgery, I had an ostomy bag. I was 25 and mortified by what my coworkers would say if they found out—so, I hid it. I bought special wraps, I excused myself multiple times a day to use the restroom, and I didn’t tell a soul in the office.
Why did I do this? I was afraid of receiving the same type of commentary from my coworkers that I did in my personal life: very personal and embarrassing questions about my body, and such jokes as “does it smell?” (No, it didn’t).
There are many things that you might have no idea are happening in your coworkers’ lives. Try to be aware that it’s often a touchy subject, and the reason you had no idea is because they didn’t want to make a big deal about it or have to answer very personal questions.
Unless you have been asked, or are a doctor… do not give advice.
It means a lot when a coworker expresses concern over your well-being. You may want to share something from your personal journey and offer suggestions to someone about their condition. Just...don’t do it.
People living with invisible illness have often exhausted the options for maintaining control of their body and lives. It’s unlikely that the miracle diet that you want to suggest is going to help. And it’s even more likely that they’ve already tried it.
Contrary to what many think, more sleep will not solve the issue of chronic fatigue, yoga does not help everyone relax... and the list goes on.
“In the end everyone always associated it with me doing something wrong. I was the problem. I wasn’t sleeping, eating the right foods, or exercising enough.” - Kristopher Sutter, Invisible Disability Project
If possible, find other ways to ask “Are you feeling better?”
It’s very rare that I take an actual “sick day.” As a matter of fact, the majority of the days I’m working at full capacity, I’m not feeling great. So, when someone living with a chronic condition acknowledges just how bad they’re doing and takes some time off, it’s unlikely that they’re going to come back “feeling better.”
Try to remember that some people’s struggles are constant and unlike a simple cold, chronic illnesses don’t go away over the weekend.
Remote work can be a lifesaver. So is flexibility.
Before the COVID-19 pandemic forced most of the world into a work-from-home norm, people with chronic illnesses would require this as a reasonable accommodation.
In my case, some days are significantly worse than others and I will never know what the day (or even hour!) will bring until it happens. Before the new norm of working from home, I had daily anxiety about my commute and about what would happen if I started feeling seriously ill mid-day. When offices start to open up again, try to remember that working from home isn’t an excuse to take a day off. But it is a very powerful way to provide flexibility and understanding to those who need it.
Remember that having a disability doesn’t prohibit people from excelling at work.
Assumptions can be harmful. Whether or not someone has a disability does not determine if they will be a good fit or be able to handle the stress of a job or promotion. If you are informed that a candidate struggles with a chronic condition, keep in mind how that could be a benefit to their role or performance.
“The chronically ill and disabled have a trait that might even give them an edge over other workers—they know how to adapt.” - Hannah Olson, CEO of Chronically Capable
If you can take anything away from this, let it be this:
If we all show up in the workplace prepared to understand each other’s struggles, or at least try, we can create stronger and better workplaces together. Be genuine, and take care of yourself and your teammates. Everyone, disability or not, has their own struggles.