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Coping With the Guilt of Illness

Guilt surfaces in my writing frequently and, when I publish anything that mentions it, I’m deluged with comments and emails from readers who are also plagued by guilt because about everything they’re unable to do due to illness. I also get comments from healthy readers who tell me I have no reason to feel guilty because I’ve done nothing wrong. But the guilt of illness is not rational.

On a Good Day is the most recent post to prompt a lot of readers to say they feel guilty. Reading those comments broke my heart in a way that had never happened before. It was so clear to me that these readers had done nothing wrong, but were punishing themselves for being sick. I was saddened both by their distress and how much it echoed how I used to feel.

That’s right, I said how I USED to feel. As I read other people’s responses to On a Good Day, I wanted to offer a balm or a strategy to move away from feeling guilty about letting people down because of illness. Only then did I see how much guilt I’ve let go of in the last year. It took days of reflection to figure out what had made the difference in my life. Self-compassion was the answer.

As an extraordinarily harsh self-critic, developing self-compassion seemed like the last thing I’d ever be able to do. And yet, I’m doing it. I’ve made enough progress to release the massive guilt that used to overwhelm me. I still have a LONG way to go, but this little bit has turned my life upside down — in a wonderful way.

I’m sure working with my therapist has made a huge difference in my self-compassion, but I’ve also learned a lot from books, podcasts and audiobooks. I’ve recently discovered the amazing resources from researcher Kristin Neff. Her audiobook Self-Compassion Step by Step is essentially a self-compassion workshop on CD. I’m listening it now and wish I’d found it years ago. Her website, self-compassion.org, also has great free resources, including videos, blog posts, self-compassion exercises, Q&A and even a self-compassion quiz.

I took that self-compassion quiz yesterday. I scored 2.19 out of 5. Anything below a 2.5 is considered low self-compassion and 2.5 to 3.5 is considered moderate. I was thrilled to be that close to moderate. I have no doubt that if I’d taken the quiz a year ago, my score would have been well below 1.

Even a small shift in self-compassion can make a huge difference in how we treat ourselves. If you’re weighed down by guilt, please take a look at Dr. Neff’s website and maybe look at some books about it. It isn’t a quick fix, but the psychological weight that has been lifted from my life has been so worth the work.

Writing this got me curious about what I’ve written about guilt over the years. Here are a few samples, including my first written attempt at self-compassion:

And a very similar post, published on Migraine.com last week: Letting Go of Guilt.

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The Silencing Effect of Chronic Illness

“Sometimes the accumulation of his silence seamed to heap upon him, as slowly as snow, until he felt he could no longer be seen.” –Mr. Panicker (a character in “Aerogrammes,” by Tania James)

And sometimes I lose my breath when lines in a story are so applicable to life with chronic illness. Whether a person withdraws from others due to devastating physical symptoms, a lack of understanding from others in our lives, the clinical depression that’s comorbid with so many illnesses, or yet another of the myriad factors for social withdrawal, chronic illness is incredibly isolating.

I cut myself off when my attacks are severe because it takes more physical and mental effort than I’m capable of giving.Unfortunately, that’s meant years of silence in some cases. Even when I feel “better” (my version of better being far sicker than a healthy person’s idea of well), my energy is so limited that I often spend it all on the minutia of daily life rather than socializing. While I’d very much like to reconnect with my loved ones, the day-to-day tasks feeding myself, seeing doctors, doing laundry, wrangling with health insurance, and working have to come first.

Just like Mr. Panicker’s silence accumulates, so do the symptoms of chronic illness. As the symptoms pile on, a patient can become unrecognizable to even ourselves. How can a person connect to others if they don’t even know who they are anymore? I used to dread having to talk about my life. I had nothing to talk about other than illness, the severity of which I was unwilling to acknowledge. My days were solely dedicated to survival and not in an exciting I-defeated-a-grizzly-bear kind of way, but of the can-I-go-to-the-bathroom-now-or-does-it-hurt-too-much-to-move, I-must-feed-myself-so-hunger-doesn’t-trigger-a-migraine variety. Now, I’m more willing to talk about illness and I’m more aware of how much work I do every single day, but I still often think my life must look terribly boring to other people.

The stigma of chronic illness imposes yet another kind of silence. Some people don’t feel like they can talk about their illness without sounding like a complainer, so they just don’t say a word. Others always have to put a positive spin on it, focusing on some miniscule change or possible new treatment. (I’m guilty on both accounts!) Then we encounter the numerous healthy people who are afraid of chronic illness or think they have the answers, forcing their beliefs or cures or stories on us. In these ways and many others, those with chronic illness, like Mr. Panicker, are unseen.

It’s not that people with chronic illness want that illness to be at the forefront of every interaction. We don’t want to be singled out or pampered or treated any differently, but we want to be seen. We want to have all the aspects of ourselves recognized and illness is one part of who we are. When someone tries to deny our realities and experiences or forces a “cure” on us, they aren’t seeing us for who we truly are. For me, that’s what hurts the most — when a person can’t be bothered to see all of me, chronic migraine included, and see what an amazing feat it is that I get out of bed every day.

It took me many years to accept that the people who tell me I’m brave are right. I am courageous and strong for trying to live a full, happy life when I have a debilitating chronic illness. I can dismiss the people who call me weak because I am sick because I know they are wrong. It’s the people in-between, the ones who don’t blame me, but also think I would get better if I tried harder or the ones who gloss over the role migraine plays in my life that I get most frustrated with. Those who make the effort to see me for who I truly am, who are not afraid to acknowledge my illness, are the only people to whom I feel deeply connected.

Again, I don’t want to be only seen as a person with chronic migraine, but to have all the aspects of my identity — good, bad, messy, complicated — to be acknowledged. Illness isn’t all that I am, but it’s a huge part of me. A part that makes my life difficult and my triumphs noteworthy. Denying or ignoring the role of chronic illness in my life invalidates the tremendous achievements, the emotional fortitude, the unbelievable strength I display every single day.

 

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The Power & Strength of Vulnerability, Even in Illness

Just the thought of being vulnerable makes most people recoil. Open yourself  emotionally to the whims of others? No, thank you! But when you’re sick, you have no choice. You must rely on others to take care of you or the responsibilities you cannot deal with; you have to repeatedly reveal your deepest agonies to health care providers (who may not be understanding) and hope they’ll give you the treatment you need; you have to let others see you at your worst, when you have absolutely no strength to keep up airs.

The vulnerability inherent in illness feels like a weakness, when the truth is actually the exact opposite. Vulnerability is a sign of strength and courage, as well as a powerful tool that allows us to connect deeply to others and live wholeheartedly, according to the research of social work professor Dr. Brené Brown. Her TED talks provide an inspiring look at vulnerability and shame (another major emotional factor in chronic illness).

I highly recommend watching both. In The Power of Vulnerability, Brown discusses her research and personal aversion to vulnerability, as well as how important vulnerability is living fully. Listening to Shame addresses the power of vulnerability as well, but looks at the epidemic of shame in our culture and the difference between guilt and shame — an important distinction for those of us with chronic illness.

Brown’s talks aren’t proscriptive, but provide insight into the power and strength of vulnerability. Although I didn’t realize it, I’ve been applying the principles she discusses as I’ve become increasingly open about the true impact of chronic migraine on my life. In letting people see me when I was at my sickest, in reaching out for help when Hart and I were alone in a new city, in not hiding the magnitude of my pain or degree of disability from friends, my connections to others are so much deeper and richer than in all the years I tried desperately to pretend I wasn’t as sick as I am.

By trying to hide chronic migraine, I was putting a wall between myself and anyone who tried to connect with me. Because of my shame over being sick, I wasn’t living honestly or authentically. No one could know me, not even myself. It’s not coincidental that I lost my sense of identity at the same time I was attempting to be invulnerable.

Vulnerability is frightening for everyone. To be open about an illness that is heavily stigmatized and often dismissed as inconsequential or made up is even more terrifying. And, yet, Brené Brown’s research shows that being vulnerable is the key to living wholeheartedly and authentically. It is also a sign of tremendous strength. As she says in her talk on shame, “vulnerability is our most accurate measurement of courage.”

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The Internal Critic

There’s an internal critic in my mind, a voice that judges me for lying on the couch and being unproductive during a migraine attack. This critic is a young, healthy person who has never had a migraine. That’s right, I constantly assess myself against a standard that has never applied to me.

Like a 50-year-old who looks in the mirror and berates herself for not looking like she’s a 20-year-old runway model, I evaluate myself against an entirely unrealistic standard. No wonder I’m forever falling short. I am not young and healthy; I never have been. Yet I regularly tell myself I should act as if I were.

I’m not alone in this. I shared a version of the first paragraph of this post with a chronic migraine forum and was shocked to see how many people identified with what I wrote. Not a day passes without a migraineur in my social media sphere saying they’re a bad parent for missing a kid’s sporting event or they’re lazy for letting dishes pile up or they’re weak for not being able to get through the day of work — all because of a migraine attack.

None of these people are stuck in bed because they are self-centered or weak or lazy or attention-seekers, but because they are ill. They aren’t staying home because they don’t want to participate in life, but because they are too sick to do so. Still, they constantly question their own illness, their own bodies, and their own day-to-day experiences. As do I.

Migraineurs are often frustrated by unkind, unthinking comments from the outside world. People who have never had a migraine seem to think they know better than those who live and breath migraine. We’re told that migraine is “only a headache” and “all in our heads.” We’re told that all we have to do is eat less [blank], drink more [blank], do [blank] exercise routine, “calm down,” or abide by some other current pop culture craze and our migraines will disappear.

The voice of the internal critic that I and many other chronic migraineurs possess appears to have developed out of these and other similarly ignorant beliefs about migraine that abound in our culture. We can easily scoff when someone tells us to stick cabbage to our foreheads (yes, this was a “cure” floating around on Facebook recently), but it isn’t so easy to brush of the implied meaning behind these messages. Instead, these insidious beliefs work their way into our self-perceptions until we, too, think that we’d get better if we only tried harder, that we’re somehow to blame for our illness.

It doesn’t matter that migraineurs constantly work our butts off at maintaining a schedule, minimizing stress, eating right, finding triggers, trying treatments, etc. We work tirelessly at improving our health — much harder than most people ever have to and more than they can possibly imagine. As if we weren’t already exhausted enough by the physical experience of migraine, we focus our limited remaining resources on trying to avoid future attacks. Despite all our efforts, we still think that we need to work harder, do more.

I’ve never cared much what other people think, so you might assume it wouldn’t matter to me that society treats illness as a sign of weakness and personal failure. The problem is that I internalized these beliefs long before I even knew they existed, let alone how harmful they are. I am not struggling against an outside force, but against myself. That’s the most painful part of all.

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Migraine Beliefs

I am a faker.

If I tried harder, I wouldn’t have migraine.

It is my fault that I have migraine.

I’m only sick for sympathy or attention.

If I were a stronger or somehow better person, I wouldn’t have migraine.

I have chronic migraine because I don’t want to work (and I have specific migraine attacks because I don’t want to clean the house/go out to dinner with that person/see that movie).

I am not as sick as I act like I am.

I am lazy.

I am weak.

I am a failure.

These are the migraine-related beliefs I uncovered in therapy yesterday. Talk about a landmine. Knowing I’ve been carrying around these harmful falsehoods most of my life makes me incredibly sad.

I am sad that I learned as a child — from adults who couldn’t see my illness and so didn’t believe I was sick, from kids who called me a faker, from a family who thought pushing through illness would always overcome it, from everyone who told me “headaches” were trivial — to ignore my body, to not trust myself and how I felt. I learned that illness is wrong and shameful and that by “giving in” to illness — or even admitting how sick I feel — means I am a failure.

I am sad that I have carried these notions so long. That even after eight years of writing about migraine and being called a migraine advocate, I still hold on to them. That I absolutely know these beliefs are untrue and yet I am still invested in them.

I am sad that I am not only sick with a physical illness, but with shame and self-hatred about that illness.

I am sad for all the migraineurs who hold tight to similar beliefs about themselves. And for the friends and families of migraineurs who believe such things about their loved ones.

I am sad to live in a society that sees any admission of difficulty as weakness. That treats illness as personal (or even moral) failure. That blames the patient for not improving.

I am sad for the little girl who internalized all these messages and for the adult woman who is still haunted by them.