Hi! This essay is a guest post written by my friend, Patricia. It explores her perspective as a white chronically ill parent of a white chronically ill child, and draws parallels between her experiences of ‘parent guilt’ and ‘privilege guilt.’
The stories and health details about Joe and John are shared with consent.
Content note: this post includes discussions of medical experiences & symptoms including surgery & skin wounds
Here’s Patricia!:
Hi. I am thrilled to be here talking with you, my fellow Fans of Charis. Let’s dive right in.
If you and your child have chronic illness and/or are disabled, it is very likely that you’ve experienced some guilt about it. There’s plenty to choose from: the guilt that comes with parenthood and the guilt that comes with passing your illness on to your child. Today I want to expand on that even further. In this historical moment of possible structural shift, at this possible tipping point away from the world that encouraged the murder of George Floyd and so many others and toward something new, I want to look from our parent guilt to our national guilt. (To allow us each to think about our various privileges, I’ll call it “privilege guilt.”) Today I would like to ask whether how we respond to our parent guilt can teach us something about how to move forward as a guilt-stricken nation.
First, let’s consider the chronically ill disabled child. Let’s start with Joe.
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If you already know the comorbidity story by heart, feel free to skip this section.
I gave several terrible gifts to to my son, Joseph. Some are hereditary things that I also suffer from, and others I can say I gave him by virtue of the fact that it was my body he was formed in. First, I passed to him a laxity of the connective tissues called hypermobility syndrome, a mild form of Ehlers-Danlos (EDS). As his bones grew, it slowly became apparent that he also had something termed “miserable misalignment syndrome,” aka “torsional abnormality.” Basically, this meant his shin bones were rotated about 30 degrees off center. Together with the EDS, this caused countless dislocations of his knees and an inability to walk or stand for more than a few minutes. In junior high, after years of PT, he underwent a series of astonishing corrective surgeries that have allowed him to walk with less pain and far fewer dislocations, although he still has trouble standing and walking more than a couple of blocks.
Another thing Joe was born with was a thick, painful mixed vascular-lymphatic-capillary lesion on the back of his thigh. It bled easily and was prone to infection. After several years of painful laser treatments, the lesion was excised the summer before his ninth grade, and now all that’s left is a thin line of red tissue along a long surgical scar and a faint bluish tinge to the surrounding skin, indicating where the lesion still sits beneath the surface.
I also passed migraine to Joe, and it has become chronic migraine. In the last three years he has also suffered from anxiety, depression, and a paralyzing back pain that appears to be fibromyalgia. He also got a surprise bonus, Tourette syndrome.
Since eighth grade these ailments have kept Joe out of school, away from the social environment in which he thrives. It’s been a childhood of medical appointments, of referrals to multiple specialists at multiple facilities, of multiple surgeries with long recoveries, and of many, many days of lying in his darkened room, waiting for the pain to ease up or the fatigue to end. It’s been a childhood burdened with physical and psychic pain, and the fact that Joe was stoic about his pain for the first decade or so of his life and that I encouraged or at least modeled that stoicism only makes the central sensitization that he’s suffering from now harder for me to bear.
Meanwhile, my husband, John, and I manage our own chronic conditions, and I, for one, fear that Joe will grow into my other ailments, including the trigeminal neuralgia (TN) that lives like a spiked worm in my left temple.
The whole thing sucks, it bites, it’s SNAFU. You know the story.
***
That most of Joe’s conditions are hereditary and chronic creates huge potential for guilt, and the guilt looks a little different for each of us. Joe feels guilty for being ill, for being a “problem” and a cause of worry. John and I feel guilty for these things, too, and we feel guilty for being a source of illness and pain. We also feel guilty for becoming parents at all, and for waiting until our forties. We feel guilty for not doing a better job of advocating for Joe; we feel the guilt and tireless self-doubt that come with making health-care decisions for your child. Underlying all this I experience what they call “global shame,” a fundamental guilt for Being that is rooted in my early life. I feel guilty for being broken myself and of creating brokenness in someone I love.
I come by global shame honestly, being a white woman of Lutheran heritage who grew up on Indian reservations. I am a life-time, card-carrying guilt practitioner, what psychologists call “guilt prone.” I’ve carried guilt like I carry pain; it’s pretty much always there.
***
Our privilege guilt, too, is always there, in many instances since birth. What it looks like varies from person to person and age to age, so take your pick, depending on your privilege. There’s guilt about our collective failure to protect the land, the air, the water; nonhuman animals; and many groups of humans–the poor, the sick, the disabled, children, immigrants, women, LGBTQIA2S people, the unhoused, the incarcerated, artists and other sensitivities … There’s guilt about our collective arrogance in international affairs, about our history of white supremacy and profit worship. There’s guilt about slavery, land theft, genocide, and general oppression. There is so much guilt that many of us have a global shame about being U.S. citizens and don’t know how or whether to be patriotic, how to love our country.
***
In response to my parent guilt, my thoughts strike out with the first accusation (“Why did you even have a kid?”) and a cliché defense (“If we didn’t, then this awesome person wouldn’t have existed.”). This back and forth continues as I rationalize our choice to parent as the result of ignorance and hope: John and I decided to try to get pregnant in a fit of optimism during an outbreak of good health. I had been getting better, and we didn’t really recognize John’s depression as an illness. My defense finally comes down to this: Life is hard, and that doesn’t stop people from having kids.
All of these arguments are weak because this guilt won’t be absolved with argument. All the other things that you think could absolve me — the fact that I had a very healthy pregnancy, good prenatal screenings, and normal delivery; that many of Joe’s systems work really well; and that he’s a super well-adjusted kid — these are all things to be grateful for, sure, but they don’t touch the guilt. The guilt is a visceral reaction to the belief that my toxic body contaminated my baby.
This parallels our national guilt. To the accusations of genocide, enslavement, structural oppression, and so forth, the self-preserving response is what James Baldwin called a “stammering [that] can be reduced to a plea: Do not blame me.”¹ I wasn’t there, I haven’t done anything, my ancestors came later, and so forth. We point to the list of “good” things we’ve done as a nation — the Bill of Rights, the Marshall Plan, the Social Security system, “universal” education, the Peace Corps. Sure, yes, fine. But these don’t prevent the scales of human suffering from tipping. They do not absolve.
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Psychologists distinguish between “shame-free guilt” and “guilt fused with shame.”² They’ve found that shame-free guilt is a good thing; it tends to motivate us to “accept responsibility and take reparative action.” But when guilt is fused with shame, we feel guilty not only for what we’ve done but for what we are. Shame-fused guilt defines us as wrong at our core. And that, they conclude, is “maladaptive.” It doesn’t serve us.
That all rings true to me; in my experience there is a difference between guilt as a feeling and guilt as a verdict.
Let’s take the feeling. Guilt is a feeling, or rather, a cascade of feelings. Guilt can be my stomach flipping, or a feeling of panic rising in my chest. And like any feeling, guilt can trigger thoughts, which trigger more feelings, and anywhere along the way, thoughts and feelings can turn to action. In this way guilt motivates; it makes me think about and take responsibility for this child, for keeping him safe and preparing him for adulthood. It makes me look at my complicity in injustice and helps me identify where my power to change things lies.
But feelings of guilt can also be tangled up with global or existential shame. When this guilt-fused-with-shame is triggered, my very being is condemned, and the resulting feelings present a full-on emergency response, where I’m flooded with sensation: my heart rate goes up, my palms get sweaty, my TN is triggered. There might be flashbacks, and I might dissociate.
Yep, this is maladaptive. This kind of guilt does me little good. Its discomfort can distract me from my responsibility; it can put me on the defensive and leave me trapped in a place where no punishment and or forgiveness can ever suffice. Chronic parent guilt can mar my relationship with my child, as I relate to him from a constant, unfillable need for absolution that I can never hope to deserve. Chronic privilege guilt can, at best, make my interactions with others awkward, and at worst it can lead me to extremism and violence. If I am not conscious of the guilt, if I live in a state of denial, that guilt can twist my feelings into anger, and not the good kind.
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Let’s look at this shame-fused guilt a little more closely.
Let’s say it is triggered by a new diagnosis or side effect in Joe. That is, I experience something or I’m presented with an event or an idea (in this case, a diagnosis), and that brings on a feeling (guilt). For me personally, the guilt in this kind of situation tends to feel like paralysis, the “freeze” in “fight, flight, or freeze.” It feels like air pressure inside the back of my head and a sense that there’s something in my lungs and throat — like they’re filled with balsa wood. (I know, weirdly specific.) This feeling doesn’t trigger thought; it stops thought, and action. Paralysis.
Then there’s the “flight” response, which in my case looks like denial and leads to binge eating and TV. Denial is more active than paralysis; it’s at least an opinion — Fuck no, he can’t have that, too! — and a next step — Open the fridge and pick up the remote.
And finally, in a “fight” response to a guilt trigger I might flail around in a desperate attempt to “fix” the situation by doing frantic research and ordering a shit-ton of supplements and a random device or two.
Our privilege guilt can cause these same reactions: I experience something or learn about a national crime and am struck speechless (freeze); I feel overwhelmed and so avoid the news (flight); I panic and join webinars, give money, and rant online in an effort to restore stability to my worldview, that image of myself and my country as good (fight).
With any type of shame-fused guilt I can experience one or all these responses. I might rotate through them very quickly, and I might experience them with varying levels of conscious awareness. I can get caught in them so deeply that I actually feel good about my guilt (“Look at all this awesome guilt; aren’t I a great ally?”). It can get pretty neurotic.
Perhaps not surprisingly, feelings of shame-fused-guilt have been shown to induce “increased proinflammatory cytokine activity.” So when guilt is a chronic condition, it can lead to chronic inflammation, which we know underlies many chronic conditions. Underlying inflammation has even been found to exacerbate symptoms of COVID-19, leaving some patients dead or with long ICU stay and compromised organ functioning.³
Knowing all this gives me either one more reason to feel guilty about my illnesses (since apparently I exacerbate it by being so neurotic) or, more constructively, one more reason to pay attention to my shame and keep working on my healing.
***
Like healthy parent guilt, healthy privilege guilt can be a motivator, and that may be part of what we’re seeing as millions of people who have benefited from privilege join and support Black Lives Matter, the Poor People’s Campaign, and other multiracial, intergenerational, intersectional movements for structural change. But if guilt is suppressed or misdirected, it can backfire, rendering us incapable of effective action and unable to see a good way forward for our country, or our species.
As parents of chronically ill and disabled children, I believe we are ahead of the curve in living with our guilt in effective ways. We do amazing things as advocates and life coaches, teaching our children how to navigate a world that does not support them. We learn to live with our guilt without projecting it onto our children. We develop a sense of humor about it. So first of all, let’s acknowledge those accomplishments.
And then let’s think about our parent guilt in terms of what it reveals about our other chronic guilt, our privilege guilt.
***
To get started, I’ve made a list of other possible responses to feelings of guilt/shame besides freeze, flight, or fight. I am hoping you have even better ideas, and that’s one reason for writing this — to encourage you to share your good ideas. So here are mine, in no particular order:
1. Recognize that I’m in charge of my own response.
I tend to avoid feelings of guilt because they’re unpleasant and scary. I’m afraid they will paralyze me. I’m afraid they’ll take me to the full-on shame-based PTSD dissociation place. And I’m afraid they are the Truth.
But feelings of guilt, whether parent guilt or privilege guilt or some other kind, are not the Truth; they’re feelings. And I can decide how to respond to my feelings. When feelings of shame and guilt are triggered, I have options. I don’t have to be sucked all the way in. I can divert my attention to something positive. I can shift the question. Heck, I can shift the blame to someone or something else. Or I can stay with and respond to the guilt, as a feeling rather than as a Truth, for as long as I decide to and then let it go.⁴ I can ask “Is this guilt feeling revealing something I need to see or leading me somewhere I want to go? Or is it just a habit?”
My chronic guilt feelings are habitual. They’re like an old couch — it’s really uncomfortable but its dips align with my curves, and the older I get the harder it is to get up once I’m down in it. But I’ve found that as I become better at being aware that I’m falling into freeze, flight, or fight, I gain more control over my response. For instance, rather than falling headlong into denial by staring at my phone for six hours, I might recognize the desire and even healthiness of denial as a way to process things, and decide to give myself permission to spend 90 minutes watching something distracting before moving on. In other words, the more aware I am of what is going on with my feelings, thoughts, and actions, the more choices I have.
2. Smile.
I have TMJ, as well as TN and migraine, and my face hurts when I talk or smile a lot. I growl at the song “If you’re happy and you know it” — it’s always seemed like a forced way to make everything “nice.” So smiling does not come naturally to me. My RBF (Resting Bitch Face) is a pained scowl or a blank, deadened stare: but I have learned that I can improve my general outlook — shame and depression included — by summoning up a smile, however faint, whenever I can.⁵
Don’t get me wrong. I still get depressed and discouraged about our odds. I’m old enough to be skeptical about the chances for authentic national racial healing. And I doubt the possibility of real change. But still, I work at smiling. Because even though life sucks, it’s better to see hope, to work for change despite the risks, to get out there, physically or virtually, and place my vote for a transformed future.
My smile can be awkward or imperceptible; it can be a wry smile, or a pained smile, or even a smile that’s only a smiling thought. Smiling and laughing with trusted people who get it is a potent weapon against disease, pessimism, depression, suicidal thoughts, and so on. It triggers endorphins and all that. It gives me strength for the challenges ahead.
Quick story about how I got started on the smiling thing: My morning routine used to involve groaning — I’d groan upon waking, groan upon moving, groan upon seeing myself in the mirror. But when Joe was about 18 months old, every morning he would stand up in his crib, point out the window, and gleefully announce, “The sun is up! The sun is up!” It was so surprising, so alive, so counter to my morning routine that it hit me hard: I do not want to take that stunning optimism away from my child by spreading pessimism. So yeah, I smile. 🙂
3. Don’t make the person you feel guilty about deal with your guilt.
I feel pretty strongly about this one. I try not to bring my guilt about Joe to Joe. He’s got enough to deal with, and he can’t absolve me.
Same with privilege guilt. There are some things we need to deal with on our own.
If you have guilt feelings about a person or group, then bring them anywhere else: to a support group or a trusted friend or a journal. Do not bring your guilt to the person or group involved until or unless you’re able to move from those feelings to conscious thoughts or actions. Work through the feelings yourself; don’t expect the person or group to do it for you.
4. Recognize guilt, hear it out, thank it, and move on.
One way to work through my guilt feelings is to apply the lessons of my meditation practice to them. That is, recognize the guilt feelings, be with them, listen to them, and let them go.
The first thing is to really acknowledge the guilt. Greet it: “Hello, Guilt. What brings you here?” Then, sit with it, even let it trigger the cascade of feelings if I have energy and time enough, but stay conscious of them rather than being sucked in. “Look, there’s that feeling in my stomach. My sternum. My throat.” Give the feelings a chance to explain themselves. Maybe, if given the chance, they can explain themselves early on in the cascade of feelings, thus avoiding some of that unpleasantness. And the last step would be to express thanks — “Thank you, Guilt, for that insight” — and move on to meditate on my response to what I have heard, whether it be another emotion or a thought or a decision to act.
I get it if this sounds hokey. I don’t have a lot of experience with it, so I can’t exactly recommend it. But I’ve gotten so much benefit from meditation that I’m hoping that by putting this idea out there, I’ll actually remember to try it more often.
5. Look beyond the boundaries of my guilt and responsibility and recognize that my experience also deserves mention.
My upbringing taught me a kind of stoic silence: Life is suffering, so don’t complain. “Don’t complain” in that worldview means “Don’t talk about your pain. Don’t give it attention or bring attention to it.” Add global shame to the mix, and you get, “Your experience isn’t worth attention.”
So yeah, I have difficulty seeing my own situation as deserving of help or attention. And when I do ask for help it tends to be a “falling on your doorstep gasping ‘Help!'” situation, where I’m so undone I can’t even name what I need. I rationalized or try to hide this pathetic viewpoint by arguing that giving attention to my chronic stuff only makes it more real, and harder to bear. (Which is kinda true.) When I feel the desire to complain, I shame myself for being negative, and that only adds momentum to the cycle.
Part of what I’m learning from Charis and from advocating medically for both Joe and myself is that the efforts I make for others don’t have to overshadow or replace what I do for myself. Refusing to mention my own needs doesn’t help; being silent about my experiences as a chronically ill parent of a chronically ill child only adds to myths like “the selfless mother of the disabled child” and “migraine is just a headache.” What’s more, being silent adds to my guilt, as I recognize that Joe comes by his stoicism naturally even though it’s not at all something I meant to teach him.
I’m learning to give my situation attention. I’m learning to broaden my focus, beyond my guilt and responsibility. This allows a shift from “I gave my child this health condition” to “Both I and my child have this health condition,” which makes more space for us to learn and be together with our conditions. I’m learning to recast my guilt from a wholly personal failing and to recognize the societal structures involved that are just as broken as I am.
The parallels between parent guilt and privilege guilt are interesting here. With privilege guilt, there’s been a taboo about talking about it. We say it’s okay for those harmed by privilege to protest, but it’s not okay for those who benefit from privilege to talk about how their privilege affects them negatively. This is also hypocritical and condescending. Or maybe it’s just uncomfortable, so it’s not so much an imposed taboo as an internal barrier of discomfort and fear. This taboo is breaking up, but it’s still there and we don’t have much practice yet in this kind of self-analysis.
Owning up to our privilege entails owning up to how that privilege hurts us as well as how it benefits us and hurts others. White people benefit from racist systems, but these systems ultimately weaken white people and, yes, hurt them along with everyone else. Non-disabled people benefit from ableist systems, but these systems ultimately weaken and hurt them along with everyone else. And so on. Our privileges limit us, they silence, they cause moral injury. Paying attention to that can shift the narrative.
We can choose to sit in chronic guilt for our privilege: “The U.S. sucks. White people suck. I suck.” Or we can recognize that our experience as privileged is important to understand. The more we understand how privilege functions, how it affects our psyches, our way of being in the world, the better able we’ll be to get through the pessimism and cynicism and despair to a place where these human-made structures can be human-changed.
So whatever your privilege, don’t berate yourself for being a learner, for not knowing exactly what to do with it. Join a group of fellow travelers learning how to name and respond to the guilt, and work hard there to be humble and honest.
***
That’s all I’ve got for now. Please let me know what you think. What is your parent guilt experience? Privilege guilt? What does it feel like? And how do you deal with it? What are your biggest guilt triggers?
I want to thank the members of the Indigenous Allies Discussion Group I’m in for bringing up the issue of guilt and getting me thinking. And a huge thank-you to Charis for inviting me here, and to you for listening. Please take care, mask up, and ask for the help you need.
Patricia Heinicke Jr. works as a freelance publishing professional and lives in Sacramento, California. You can reach her at patricia.heinicke8@gmail.com; on Twitter she’s mostly a lurker and retweeter (@PLHeinicke).
If you’re able and you’d like to donate in Patricia, John, and Joe’s honor in response to this post, please give to the coronavirus efforts of either the Yellow Bird Life Ways Center or the Know Your Rights Camp.
Sources:
¹ James Baldwin, “The White Man’s Guilt,” Ebony, August 1965
² I got the psychology research for this post from this review of the literature on guilt and shame: June Price Tangney, Jeff Stuewig, and Debra J. Mashek, “Moral Emotions and Moral Behavior,” Annual Review of Psychology 58 (2007): 345-372
³ See James Hamblin, “Why Some People Get Sicker Than Others,” The Atlantic, April 21, 2020
⁴ As TJ Woodward puts it, “Feeling your feelings and responding in a conscious way is distinctly different than having a feeling and reacting to it.”
⁵ If you have facial pain, please don’t think I’m recommending that you trigger more pain. I can smile like this only because I work from home and am not pressured to smile at all if I don’t want to. Also, I find the old “it takes more muscles to frown than it does to smile” to be useless and shaming. My frown muscles can beat that person’s smile muscles any day!
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