I Finally Let Go Of Shame About My Illness

It was June 2016, and my ulcerative colitis plus an undiagnosed C. diff infection were making me utterly unable to care for myself. My husband Ron and my work colleagues were running themselves ragged to help me and my projects. In mid-June, Ron and I moved to my mom and stepdad’s house and my mom began helping with my care.

As all this unfolded, I felt guilty. I wished badly that I could do more to help. Everyone around me was exhausted, and I suspected that my carelessness with my health in the spring had contributed to this crisis. This might be partly my fault.

Between bouts of pain, I had a lot of time to reflect on this guilt. To my surprise, I realized a similar feeling had already been here before the crisis—that ever since diagnosis a couple years earlier, I’d been carrying a largely unconscious burden of shame about my illness.

But as I lay here now, enduring my pain and exhaustion, I finally began healing this shame.

I wasn’t alone in my shame. As I would learn years later when I wrote this post, shame often accompanies illness.

“I feel ashamed I am ill,” writes Becky Hill in The Mighty. “I feel ashamed it has gone on so long. I feel ashamed I can’t seem to get well. I feel ashamed I cannot work and be busy like I used to. I feel embarrassed to be sick!”

I think these sentiments come partly from our hard-driving modern society, where we’re taught to value independence, strength, and achievement. No one wants to be weak and sick. In the modern world, when illness strikes and self-mastery slips from our fingers, it’s hard not to feel like something’s fundamentally wrong with us just for being sick.

Then there’s the fact that our illnesses inconvenience the people around us and we can’t necessarily reciprocate their help. Regardless of whether this is “our fault” or just luck of the draw, we can’t help feeling bad about inconveniencing others.

And, I’ve learned, in some ways we’re even wired to associate physical discomfort with shame. Studies (1, 2, 3) show an overlap between the neural networks of physical pain and those of emotional or “social” pain. Taking over-the-counter pain relievers can even help with the “social pain” of a breakup! It’s as though our wires get crossed; our bodies and brains can’t always distinguish between physical and emotional pain.

(Maybe this is why our pets act so downtrodden when we make them wear the “Cone of Shame”! They seem to be thinking: “I’m being punished, although I don’t know for what.”)

In her beautiful book Radical Acceptance, Tara Brach describes her experience with discomfort and shame in this way:

For four years I struggled with chronic illness. One of the hardest parts was how being sick became a comment on who I was and my inability to take care of myself “properly.” Each time I went through a bout of fatigue or indigestion, my mind would flood with stories and interpretations: “Something’s very wrong…” I’d dwell on how I might have caused the problem… Along with a wave of tiredness or stomach cramp would arise the feeling of personal weakness, of shame. Pain was bad; it was my pain and it signaled some sort of character flaw.

But as I mulled over my own shame during my crisis, I finally realized it wasn’t fair for me to beat myself up for being sick. And it wasn’t helpful, either.

This thought came a few weeks into my flare. I was officially enduring the most grueling physical ordeal of my life, but there was one benefit: my pain and exhaustion were forcing me to become a more authentic version of myself. I no longer had the energy to make pretenses or maintain toxic relationships and feelings. One by one, I was discovering where these lingered in my life and giving myself permission to let them go.

One afternoon, breathing through the latest round of pain as I lay on my mom’s guest bed, I noticed I was chastising myself for being in this situation. 

You overworked and overstressed yourself in the months leading up to this crisis, a voice in my head was saying. Now you’re a burden to everyone around you, and it’s all your fault! Maybe you deserve this.

Suddenly noticing this accusatory voice in my head, I felt indignant. Here I was, I thought: sweating with fever, wild-eyed with pain and fear—and on top of all that distress, I was talking to myself this way? I didn’t need this!

A new voice piped up to respond to the first. I didn’t know I was at risk for this awful flare! she protested. None of my other flares were this bad. And dammit, I have been trying so hard, so much of the time since diagnosis, to get better. I’ve suffered through isolating diets, studied books and articles, and sought out counseling for my anxiety. I do not deserve this!

Recognizing the unfairness of my shame was the first step in letting it go.

And I think this applies to everyone, even those who have done more than I did to bring on their own illnesses.

In his poignant memoir When Breath Becomes Air, neurosurgeon Paul Kalanithi describes worrying that he was losing the human element in his surgery practice, becoming discompassionate to patients who brought ailments on themselves.

I feared I was on the way to becoming Tolstoy’s stereotype of a doctor…focused on the rote treatment of disease—and utterly missing the larger human significance… A truculent vet refused the advice and coaxing of doctors, nurses, and physical therapists for weeks; as a result, his back wound broke down, just as we had warned him it would. Called out of the OR, I stitched the dehiscent wound as he yelped in pain, telling myself he’d had it coming.

Nobody has it coming.

Tara Brach says we blame ourselves for illness in order to feel in control. “Not being able to control what’s happening…can make us feel we have to assign blame to something in order to regain our sense of control…if I can identify what is fixable, I can set out to fix it.” (She says this in Donna Jackson Nakazawa’s The Last Best Cure.)

It’s useful to know what may have caused our illnesses, so we can avoid repeating mistakes in the future. But fixating on whether or how much an illness is “our fault” only bogs us down, distracting us from moving forward into healing.

Focusing on blame probably even slows healing, because blame is stressful and studies have shown that wounds heal slower when patients are under stress. Numerous studies similarly show that depression and stress create worse outcomes for people with colitis.

Illness and pain are enough “punishment” for anyone, even anyone who has made poor choices about their health. Piling shame atop that suffering is cruel and unfair.

As I lay on the couch wrestling with my shame, I didn’t yet know any of the information or quotes above, but instinct told me I needed to ditch my shame in order to heal.

It occurred to me that it would help to embrace a paradox. I needed to hold onto two conflicting truths at the same time: I might have brought on my crisis, and it was not my “fault,” not due to some innate fault or character flaw. I’d done the best I could with what resources I’d been given.

Maybe the crisis was like a car accident, I thought: a hypothetical accident for which I wasn’t precisely at fault, but to which I’d contributed by taking some risks. Perhaps I’d driven on a stormy day, or I’d chosen a route with some caution signs. But plenty of others were driving there, too—plenty of people are imperfect with their lifestyles, careless with their diets and exercise.

It happened to be my “car” that had slipped. I hadn’t understood that this flare could be worse than previous ones, or that it could ever get as bad as it was now. But in many ways, I’d kind of just been in the wrong place at the wrong time.

In a car accident that wasn’t precisely my fault, I might still grapple with regrets. And there were many things I could have done better before my crisis, or before diagnosis. But my regret need not be weighed down with shame. 

With this thought, my mentality began to shift. I could take ownership of my crisis and my illness without beating myself up too much about its origins. I could see myself as someone deserving of help, even though I’d been imperfect.

In his luminous book Spiritual Bypassing, Robert Augustus Masters says we can “confuse responsibility and blame, diminishing ourselves and others in the process…Where taking responsibility expands and strengthens us, blame contracts and weakens us.” Responsibility empowers; shame diminishes.

If, after learning that we have a major illness, we see things we may have done that contributed to our getting sick, we do not have to blame ourselves for our choices but can instead compassionately recognize how those choices arose and affected us, and from this realization bring ourselves into a deeper sense of wholeness… It’s important to realize that by chronically beating ourselves up we miss out on developing a profound relationship to our illness—and to ourselves.

Masters wrote this after struggling for years with prostate cancer. “I am not at war with my cancer,” he says, “but I am in deep dialogue with it.”

Casting off my shame was an enormous weight off my chest. I felt liberated. I was starting to see my disease as something that had mostly happened to me, rather than something I’d mostly caused.

I began to feel a new dignity around my disease. That left me free to focus on what mattered: how to work from where I was, with what I had, in order to heal as best I could.