Empathy for chronic illness struggles at work
"Empathy for chronic illness struggles is not just a nicety; it's a lifeline that can uplift and validate those living with invisible illnesses."©Marco / Adobe Stock
"A hard day at work"
Empathy for chronic illness struggles at work
"Empathy for chronic illness struggles is not just a nicety; it's a lifeline that can uplift and validate those living with invisible illnesses."
Managing a chronic illness can be hard work. Treating and managing my Long Covid has involved physical, occupational, cognitive, and vision therapy. There are medications and supplements to take, special diets to adhere to, ongoing lab work to complete, and doctors appointments to attend. I have also had to learn how to advocate for myself and seek accommodations, such as a disability parking placard, to help me more easily navigate the world around me. This work is physically and cognitively exhausting, as well as emotionally draining. So I have also added to this list the work of trying to stay in a good headspace by seeking out support groups. I may not currently have an "official" job, but I have never worked so hard as I have had to in trying to manage and treat Long Covid.
I would like to offer two parallel scenarios:
Scenario 1: A bad day at work
I had a bad day at work. Even though I did everything my client asked of me for the past six months, he was nonetheless unhappy with the final product that I presented to him. He wants me to start over, but this time, he adds three new components that he didn't ask for the first time. While I am redoing that project, he wants me to start an additional project. My client was clear that even if I did exactly as he requested, there was only a 30-40% chance he would accept the work of the second project. My deadline is in three months.
To make matters worse, my boss is a total micromanager, constantly looking over my shoulder and telling me what I should and shouldn't do. I am scared I will be fired and, at the same time, am tempted to quit. But I have people depending on me, so I get up and go back to work every day.
I am trying to have a life outside of this job. I even signed up for a poetry writing class on my day off. But my boss doesn't respect my boundaries and calls during class to ask me to do work-related things. On bad days like this, I hate my job, and it helps me vent.
Scenario 2: A hard day managing chronic illness
Today was a bad Long Covid day. Even though I did everything my doctor asked of me over the past six months, she was unhappy that my recent blood work indicates that my treatment is not working the way she would like. She wants me to increase my medication levels, and add three new supplements, bringing me to nearly 20 meds/supplements taken 2-3 times per day.
Once I've been doing that for four weeks, she wants me to add an additional medication to address another Long Covid-related health issue I am dealing with. That medication works for about 30-40% of the people who take it, so there are no guarantees of improvement. I need to repeat the blood work in three months, and then my doctor will reassess.
To make matters worse, my body constantly reminds me of what I can't do. I am scared I will never recover, and at the same time, days like today make me want to just give up. But I have people who need me, so I get up and do what my doctor tells me to do every day.
I am trying to have a life outside of my illness. I even signed up for a poetry writing class. But my body is often uncooperative, making it hard to fully participate without crashing the next day. On my bad days, I really hate Long Covid, and it helps to vent.
Parallels between having a hard day at work and having a hard day managing chronic illness
Hopefully, with the two scenarios side by side, you can begin to see the parallels between having a hard day at work and having a hard day managing chronic illness.
And yet, the person in scenario 1 is generally offered empathetic camaraderie with statements such as, "I'm sorry you had a bad day at work," or "I totally hear you; clients can be so demanding!" While the person in scenario 2 often hears things like, "You need to be more positive," or "It could always be worse…" or “Have you tried just focusing on gratitude?”
Is there a place for positive thinking?
There is definitely a place for positive thinking, and I am grateful every day for all of the things in my life that are going right. However, it is possible to feel two things at the same time. I can feel both grateful for the many blessings in my life and frustrated about the pace of my recovery. And, regardless of their situation, nobody feels "positive" 24 hours a day. It's an unrealistic expectation to ask of anyone, especially someone facing chronic health challenges.
There are other reasons, as well, why saying, "Just be positive!" can do more harm than good.
"Just be positive" minimizes the experience that a chronically ill person has by glossing over all of the challenges they have already worked hard to overcome and implies that being "positive" can override the physical limitations of someone's body.
When you tell a chronically ill person to "just be positive," you ask the person to engage in performative wellness. Performative wellness is when a sick person pretends to feel better than they do in order to make the healthy people around them feel more comfortable- essentially asking them to lie when what they may really need is to talk honestly about their experience.
Statements like these play into the ableist trope that people with chronic illness or disabilities should just be quiet unless they provide you with inspiration by being fearless and stoic in the face of adversity.
Instead of offering well-intentioned platitudes when talking to friends and family venting about their health challenges, consider saying what you might say to someone who has had a bad day at work.
Statements like, "It really sucks that you have to deal with this," or "I'm so sorry you are having a bad symptom day," can go a lot farther in helping that person feel heard and supported than, "Just be positive!"
Meryl Paskow, the author "Empathy for Chronic Illness Struggles at Work," lives in the Washington, D.C. area with her husband and their two teenage and young adult kiddos. Whether Meryl is sitting on the screened-in porch watching the birds, bingeing reality television shows or waxing philosophical on her blog, The Orange Ink Blot, you will most likely find a cat (or two) on her lap.