On June 9th in “The Ethicist” column of The New York Times Magazine, a letter writer asks if it’s unethical to not date someone because he has a chronic illness. The most problematic line in the columnist’s response was, “You don’t owe it to anyone to accept that burden.” The columnist, Kwame Anthony Appiah, qualified and added to his response on June 12th after feedback from the chronic illness community.
Don’t get me wrong: chronic illness is a burden. But the way that burden was framed in “The Ethicist” was too one-dimensional and ignorant of what that burden includes — and makes it especially painful.
The shared burden
In his response, I can appreciate that Appiah was making “a distinction between what an early acquaintance required of us and what a serious relationship did” when it comes to putting care-giving responsibilities into context. It is true that chronic illness doesn’t affect us in a vacuum: our loved ones share in the experience. They have to live with chronic illness by bearing witness to what it does to the person they love. And they must learn what their loved one’s condition requires and how they can offer meaningful support.
But my problem with Appiah’s original treatment of the letter writer’s question — and this has been pointed out in his June 12th addendum — is that discussing the shared burden of chronic illness often means that a person living with chronic illness is treated as just a system of symptoms and side effects, and not as a living, breathing, complex human being.
More than that
One of the most complicated and distasteful parts of chronic illness is pity. To be seen as nothing more than an illness is condescending and dehumanizing. That is why I and so many others like me talk about “living with chronic illness” — and not “having it” or over-identifying with it to the effect of self-negation (“I am an XYZ patient”).
Living with chronic illness implies that there is a life. Yes, that life involves the necessary rituals and routines that allow the chronically ill to care for themselves. But it also entails a full spectrum of emotion and experience that is defined by much more than health.
I don’t believe there is a single person living with chronic illness — or disability, for that matter — who wants or deserves pity. What we do want and deserve is empathy and respect for how our living experience may differ from yours.
The opposite problem
I don’t want to be reduced to just my illness, but there’s also the opposite burden: that of not being taken seriously. It’s a similar insensitivity that allows people to see the chronically ill as nothing more than an illness that allows them to not take their condition(s) seriously.
And let’s call that insensitivity what it really is: willful ignorance.
Oftentimes, chronic illness is invisible. There isn’t always a clear signal that someone lives with illness. It is also near impossible to imagine a chronic health condition: a pain without relief, an illness without relief. In some respects, it’s beyond the scope of the imagination because it’s so apposite to the belief that experiences are finite.
That’s why a pronounced challenge of the chronically ill is to have their diagnosis, needs, and lifestyle changes taken seriously. It is this ignorance mixed with a lack of empathy that inspires the seemingly well-intentioned to offer delegitimizing platitudes like, “Your illness will go away,” or “Don’t think about it,” or “Have you tried meditation?”
Pity or dismissal?
My struggle is figuring out how to straddle these two burdens: of not being seen as just my illness and of my health experience not being taken seriously. I live by the credo that what other people think is none of my business, but when I interact with the world — and more specifically with family, friends, neighbors, colleagues, and acquaintances — I keenly feel the burden of being seen.
How can I be open and vulnerable about my health limitations and needs without soliciting pity or dismissal?
What I wish “The Ethicist” had said to that letter writer is that it isn’t in her place whether or not to accept the burden of chronic illness. That acceptance falls squarely on the shoulders of the diagnosed. Her true burden — and the burden of the loved ones and others who have the chronically ill in their lives — is to answer these two questions: Can she see him as more than just a system of symptoms? Is she willing to work on alleviating the burden of receiving pity or dismissal?
These are distinct challenges, but the solutions are intention and follow-through with mindful speech and action.
Of course, no one should pursue a relationship with anyone they don’t feel they can be fully present for. But here, presence means recognition that a person is more than a diagnosis, and is deserving of empathy and humanization.
This is really about you
The burden of chronic illness is heavy — maybe not heavy in the same way all day every day, but it’s ever-present. I say that with as much neutrality as I can muster because it’s a fact I’ve learned from my experience with trigeminal neuralgia.
On the days when the burden feels less heavy and more manageable, I’m more able to take care of myself without a second thought. However, what this often looks like is being on my own, above and beyond the isolation that chronic illness claims. I don’t want to be the kind of burden “The Ethicist” unknowingly alluded to. I don’t want to be pitied or dismissed, nor do I have the energy or desire to always explain myself.
I want you who live with chronic illness to know that I see you.
I want you to know that people aren’t burdens — people carry burdens. This is a critical distinction. I don’t want to equate myself to something uncertain and painful. I carry that experience, just as I carry my victories and joys.
I want you to know that whether you live with a chronic illness or not, you are not a burden. If anyone says otherwise or treats you otherwise, I want you to take a step back and instead figure out what you need and want to care for your body, mind, and spirit. Don’t settle for less. You deserve more.
I want you to know that relationships are imperfect; they’re not linear equations. They’re messy and full of flaws. The people in your life will show up imperfectly and we have to allow for that. But that doesn’t mean you have to tolerate ignorance and insensitivity. Speak up for yourself and pay attention to who in your life tries and actually does better.
Note: A version of this piece was first published on my blog on June 17th, 2020.