Eleni Stephanides

“The experience of illness is one of dependency, and the social mores of our day regard dependency as weakness.” — New York Times review of Megan O’Rourke’s The Invisible Kingdom: Reimagining Chronic Illness

The Starbucks iced green tea and my Klean Kanteen—they make a cute couple, don’t they?

You may not be able to tell from this photo, but the water bottle is leaning against the green tea. The tea supports it. Without the cup of tea, the water bottle would fall.

At some point—I don’t remember when—I’d either dropped the water bottle or hit it against something. This created a large contusion on the bottom, making it wobbly and precarious. The bottle lost the ability to stand on its own.

That day, forgetting about the bottle’s condition for a split second, I picked up the tea to take a sip. This caused the water bottle to topple over, drenching the entire table. It took about 10 Starbucks napkins to fully mop up the deluge.

After this mishap, three options presented themselves to me. I could fix the water bottle. Maybe the contusion could be flattened back into the structure, restoring its previous shape. I could leave it as is. Or I could purchase a new one.

Ultimately I decided on the latter option. For the most part, I felt okay about it because water bottles don’t have feelings. They are indifferent to being thrown away.

At different moments throughout our lives, we may find ourselves in the water bottle’s shoes. At other moments, we may be the cup of green tea. This is an inevitable part of the human condition. However, it seems like the prevailing mentality about relationships (especially in the U.S.) is that if one person is the bottle and the other is the tea, then the relationship is not healthy. 

As Maggie Nelson declared in her book The Argonauts, “Dependence is scorned even in intimate relationships, as though it were incompatible with self-reliance rather than the only thing that makes [self-reliance] possible.” The prevalence of this mentality too often leaves those who are ill, fatigued, or aging feeling isolated. We are made to feel shame on top of the pain we already experience. Not only must we manage the frustration of these limitations, but also the sharp sting of the message that we are weak. For many, asking for assistance implies that a person is burdensome.

Dom Chatterjee wrote about the ramifications of this in their own life for radically body-positive blog The Body is Not an Apology:

“One of the abusive patterns in my family was the constant push to be independent. This was true even when healing from a physical injury that prevented me from working and spurred a year-long breakdown. Suffice it to say, I learned about the ableism behind independence-focused rhetoric the hard way.”

Though my mom’s vision has always been compromised, in 2013, it deteriorated further, leading her to retire early from her job as a foster care nurse in 2015.

My dad has taken wonderful care of her. When the two of them walk in public together, he directs her when to step up or down, alerting her to sidewalk elevation changes and cracks in the road. At restaurants, he reads aloud the menus. He types and reads aloud emails; he cuts her food. During movies, he describes visual details, the absence of which may affect her comprehension of the plot. Together they were able to get their swim club to install a lane that would keep her from unintentionally swimming into the others. His attunement to her needs has come with a patience and steadiness that I feel fortunate to have witnessed.

My own chronic illness symptoms are part of what drew me to the independent contractor lifestyle—first with Lyft and then with medical interpreting and writing. My energy was low most days; I was likely dealing with undiagnosed celiac disease at the time. I didn’t feel that I could keep up with the demands of a standard job. 

At one of my regular interpreting assignments, I’d return to my car with my head spinning. I once felt so dizzy that I waited for 15 minutes before driving home. Every so often, the brain fog would feel so intense that it was like someone had unscrewed my brain, poured maple syrup inside, then screwed it back on. My symptoms are less severe now that I’m on a gluten-free diet but I still deal with constant tinnitus and dizziness under bright lights that can make it challenging to focus on my work. 

After my diagnosis, my friends’ and parents’ support helped make the transition much easier, just as my dad’s support of my mom helped her. My mom even organized our entire Thanksgiving dinner to be 100 percent gluten-free. The meal was beautiful, complete with pretty much all the staples, because she wanted to make sure I didn’t miss out on a single thing.

I appreciate the friends whose support helped ease the burden of the transition. Some had gluten-free cookbooks delivered to me shortly after my diagnosis. Others were there to listen and be present with me after my endoscopy.

Still, the idea of day-to-day invisible struggle is hard for many to wrap their heads around. And it’s difficult to offer support for a condition that you don’t understand.

As Megan O’Rourke put it: “We are bad at recognizing the suffering of others unless we are given clearcut clues and evidence. And so invisible illnesses often go unacknowledged, while less serious conditions get attention.” The author goes on to describe how, when she once had a minor (but visible) injury, everyone rushed to her assistance—even though it didn’t hurt much. Yet during her most difficult moments, no one could see, therefore she received little support.

Collectively, we need more understanding on a systemic level. We need to be able to have open and honest conversations with our bosses—without worrying that we’ll be misunderstood as lazy and under-performing or fired for not being able to complete jobs at the same speed as our coworkers.

True helping often requires slowing down. It demands being comfortable with vulnerability and dependence. It requires questioning the saying “pull yourself up by the bootstraps” rather than applying it, without critique, to all situations.

I often find myself wishing that helping wasn’t considered an extraordinary act of kindness, which perpetuates the idea that people with disabilities are burdens requiring great sacrifice. Instead, I wish that it was standard behavior for our culture, an intuitive part of caring for others that feels second-nature.

Yet as Jamil Zaki, associate professor at Stanford and author of the book The War for Kindness said, “We live under an epidemic of ‘time poverty,’ constantly squeezed and harried, and people predict that spending time on others will make things worse. For every minute they give to someone else, they’ll be a minute poorer.” I think of moments wherein I too have fallen prey to this mentality. As a Lyft driver, during moments of stress or overwhelm, I often fell into the less-than-ideal habit of looking at passengers like they were just numbers. At times, I’d become easily frustrated by any obstacle to achieving my goal for the day (give X amount of rides, earn Y amount of dollars).

Once, a passenger called saying that he wasn’t at the location provided in the app. I felt slight irritation rising from within me. It wasn’t until he approached the car with a suitcase and his beautiful black guide dog that it occurred to me that the passenger may be blind—he confirmed this upon getting in. This sight rerouted me from “perfunctory work mode” to “alert human mode”—reconnecting me to my capacity for patience and gentleness. In moments like this, it is important to discard what author Leslie Jamison described as an “imperative of efficiency” that gets in the way of empathizing. I was reminded that, in addition to being a Lyft driver trying to earn money, I was also a human trying to minimize the spread of harm.

I think that we sometimes forget that much of who and what we are now has come from other people, whether we like to admit it or not. No newborn emerges from the womb inherently strong and self-sufficient. We arrive entirely dependent, with individualized needs and differing temperaments. A combination of our home life, local community,  and the larger culture we’re born into either fosters growth and acceptance of those needs—meeting them and affirming our sense of identity—or discouragement and rejection.

Many people who function seamlessly weren’t born inherently “strong” or “better”; rather, they were born into circumstances that fostered the best in them. Or perhaps they came into this world with needs that society automatically accepts with open arms, which further bolstered their self-confidence. 

A lifetime of experience makes it clear to me that others’ needs often become burdens when we conform too strictly to the “efficiency” mentality. If we consciously remind ourselves to slow down, we might realize the perceived threat isn’t that great after all. We might realize that we were wired to help one another. It is how our species, on the whole, has survived.

Zaki also stated: “The opposite is true. After helping others, individuals experience ‘time affluence’ or a sense of effectiveness and abundance.” The reward is in the relationship. It’s not instant gratification, but more of a slow burn. The rewards of deeper connection creep up on you. They take the form of a more chronic energy that calms the spirit in an ever-present way, rather than spiking your dopamine in a single moment or two.

Embracing this mentality would lead to more support of the disabled community in general. This paradigm shift would allow society to more easily recognize the inherent benefits of investing resources into supporting other people’s humanity in the ways that we most need.

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