We Need to Redefine Productivity for Those With Chronic Illness

Alliah Czarielle avatar

by Alliah Czarielle |

Share this article:

Share article via email
main graphic for the column

My husband, Jared, and I work to earn a living. We freelance for various clients and run a business — though due to the state of the economy here in the Philippines, business isn’t as profitable as it used to be.

In between jobs, we dedicate a significant chunk of time to physical fitness by sticking to our daily exercise routines (bodyweight strength training and walking). And throughout the day, we’re hands-on parents to our 3-year-old daughter, Cittie, catering to her physical and emotional needs in every way possible.

Because of our work arrangements, our schedules are often jampacked. When the day comes to a close, we’re both conked out. But it’s all worth it, if it means we get to provide for everyone in our family. And having chronic illnesses doesn’t slow us down — at least not in spirit.

Recommended Reading
hemophilia B gene therapy | Hemophilia News Today | illustration of DNA

BBM-H901, Gene Therapy for Hem B, Shows Efficacy at 1 Year in Pilot Trial

Jared has severe hemophilia B and a seizure disorder, while I am diagnosed with attention-deficit hyperactivity disorder (ADHD) and bipolar 2 disorder. These conditions make it challenging for us to be productive sometimes.

Because we are freelancers, the amount of money we earn is based on either the number of hours we can render or the deliverables we can complete. As a result, we often feel pressured to achieve a certain level of productivity.

Ironically, Jared tends to be more productive when he’s incapacitated due to a bleed. This is because injuries force him to stay in bed and finish his deliverables instead of going elsewhere or doing a beloved hobby, like cooking or gardening. But of course there are exceptions. If he’s in too much pain due to an injury, he won’t be able to focus on work and will need to take a day off.

My ADHD is a double-edged sword. When I’m in a state of hyperfocus, I’m overly productive. I complete so much work and physically sense a need to do more, more, more. But in this state, I’m overcompensating. Most of the time, I lack dopamine stimulation and find it difficult to start (let alone complete!) work tasks.

Luckily, Jared’s tendencies to overwork balance out my “slacker” tendencies. He tells me that having hemophilia made him feel incompetent and burdensome growing up. As a result, he would overcompensate for his flaws by working more than he actually needed to. Right now, he juggles more clients than I do. Realistically speaking, I can only focus on a few things before getting overwhelmed. (I learned this lesson the hard way!)

In today’s world, productivity is often highly valued. People are encouraged to become active members of society, to advocate for themselves and others, and to contribute abundantly. These are not necessarily bad things. But when productivity becomes the ultimate yardstick for one’s worth, and when “getting things done” becomes “getting things done at all costs,” this breeds a toxic culture.

Toxic productivity culture glorifies pursuits that are generally considered productive. It also demonizes activities that do not generate results, including rest and hobbies. Unfortunately, those of us with chronic illnesses are not exempt from this. In fact, we arguably suffer more because we need money to live, and the way most people obtain money is by working for it — even if we’re already suffering for health-related reasons.

Rea Strawhill, a chronic illness and disability advocate, perfectly mirrors my own issues with impossible productivity standards in a tweet from May 16, in which she writes:

“About chronic illness and identity: people have no idea how much it sucks to have the personality of a hard-working, determined, motivated person but be stuck in a body that CAN’T work hard. It is one of the most frustrating things to constantly hold yourself back.”

An article published in 2010 in the journal American Ethnologist describes chronically ill individuals’ struggle with the societal pressures concerning productivity. People with chronic illness are often pressured to consider suffering as something to be “wrestled into submission.” People must tame their pain and find ways to work through it, even if it means having to ignore or dismiss it in order to be considered productive.

But this is not sustainable. From experience, we know that overworking ourselves to the point of neglecting our physical and mental wellness is harmful in the long run.

It’s hard to escape the grip of productivity culture if it’s the norm. But instead of submitting to it, we must actively advocate for our needs. We must normalize “doing enough” over “doing all.” We must turn things around and practice self-care instead at all costs. We must work to normalize suffering as human by becoming more transparent about what we go through. And hopefully, we can help people see that it’s not illness, but rather the obsession with intense productivity, that is unusual.


Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to hemophilia.

Comments

Tiffany Elliott avatar

Tiffany Elliott

Thank you for this. As a person with ASD/ Asperger Syndrome, and asthma, and weak respiratory system, I'm realizing how Jared felt, is how I felt, as well. In fact, I wrote a story, with a character with hemophilia, based, in part, on my own experiences with inadequacy (hemophilia works for the story, and I have a difficult time writing about autism). It's part of why I did it. As a freelancer myself, I get that, too. Maybe, this is God or the universe telling me, to slow down and focus more on my self-care. Either way, thank you so, so much.

Reply

Leave a comment

Fill in the required fields to post. Your email address will not be published.