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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 “F*ck It” List

You’ve heard of a bucket list, but how about a “f*ck it” list? This brilliant idea comes (to me at least) via the story of a woman in her late 80s who is no longer working on a list of things to do before she dies, but is now focused on her “f*ck it” list — a compendium of things she’s ready to let go of.

Why wait until your 80s to start such a list? Life is short and it’s so easy to get bogged down in trivialities that don’t really matter. Letting go of unnecessary worries, heavy thoughts, and should-haves and could-haves would lighten the load for the rest of your journey.

As the good ideas always do, a “f*ck it” list strikes me as a particularly clever tool for someone with a chronic or life-altering illness. Our day-to-day lives are already laden with frustrations and limitations and many headache disorders are exacerbated by stress. Letting go of the unwanted, unneeded strain is good for both emotional and physical health.

Like with a bucket list, accomplishing the items on a “f*ck it” list might seem difficult or even impossible. But you can’t start letting go of something if you’re not aware that you’re holding onto it in the first place. Writing them down at least gets you started on releasing your grasp.

Already on my “f*ck it” list: shoulds, self-blame, self-hatred, self-doubt, judgements about myself and others. That’s certainly a tall order, but I work on each of these nearly every day. Maybe by the time I’m in my late 80s, they’ll no longer occupy space on the list.

(I apologize if you’re offended by the language. The title is just too good to resist.)

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Our Thoughts Do Not Cause Illness, We Cannot Think Our Way to Health

What’s the likelihood that the content of the community college meditation class I’m taking in order to qualify for student health insurance would infuriate me? Almost inconceivable, I would have thought, just as I would have thought it impossible that a PowerPoint could cause me to literally shake with rage. The first slide says:

“If you don’t want to be ill… Speak your feelings.

Emotions and feelings that are hidden, repressed, end in illnesses as: gastritis, ulcer, lumbar pains, spinal. With time, the repression of the feelings degenerates to the cancer. Then, we go to a confidante, to share our intimacy, ours “secret”, our errors! The dialogue, the speech, the word, is a powerful remedy and an excellent therapy!”

And it goes on slide after slide with similar explanations after each of the headings, “If you don’t want to be ill…”

  • “make decisions”
  • “find solutions”
  • “don’t live by appearances”
  • “accept”
  • “trust”
  • “do not live life sad”

Really? All I have to do is think the “correct” way and I won’t have chronic migraine? Gee, sure wish I’d known how easy it is to erase a neurological disorder. And I bet my doctors haven’t told me about this quick fix because they’re shilling for pharmaceutical companies.

Our thoughts do not cause illness. In case that’s not clear: OUR THOUGHTS DO NOT CAUSE ILLNESS!

As with so many widespread misguided notions, there’s a grain of truth in the connection between thoughts and illness. Stress, which is often intensified by thoughts, can exacerbate many already existing illness, including migraine and other headache disorders. Chronic stress can lead to ulcers, heart disease or adrenal failure. Still, stress is not solely perpetuated by thought, but also by circumstance. Furthermore, a genetic predisposition to a particular illness is usually present in those who develop so-called stress-related illnesses, and environmental factors can also contribute to illness. In other words, the connection is not as simple and clear-cut as this PowerPoint states.

Illness is fickle and cruel. It cannot be controlled, despite our greatest wishes. It can’t even always be treated. Our thoughts can make illness easier to bear (read How to Be Sickfor fabulous guidance on this), they can inspire us to keep trying, but they cannot, cannot cure us. Perpetuating this belief comes at the great cost of further alienating the sick from the healthy. People with illness do not need judgment and righteousness, but understanding and support.

Plenty of people are brimming with negativity and hatred, but are perfectly healthy. Many others are fonts of optimism and hope, yet are mired in chronic or life-threatening illness. We are not to blame for being sick, our thoughts are not to blame. No matter how many people, how many teachers, how many PowerPoints by doctors with unspecified credentials may tell us otherwise.

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The Stigma of Illness: Blaming the Patient

A Sick Stigma: Why Are Cancer Patients Blamed for Their Illness? is yet another article about cancer with a message that rings true for headache disorders. It examines the ways in which healthy people blame patients for illness, why they do so, and how patients internalize these messages and beat themselves up. The following paragraphs particularly spoke to me:

“Judgments about behavior not only unsettle and stigmatize the patient, but reflect the interrogator’s own insecurities. Frequently, those disease detectives are attempting to regain a sense of control amid the inherently random and sometimes unjust world that we all reside in, according to researchers who have studied stigma.”

“’I think that in one part there is a fundamental assumption in our society that the world is a just place, and that bad things don’t happen to good people,’ says Gerald Devins, a stigma researcher and senior scientist at the Ontario Cancer Institute in Toronto. ‘And I think when bad things happen to good people, it’s threatening to everybody.'”

‘Secondly, you can say knowledge is power in a sense,’ Devins says. ‘If we feel like we understand something, it gives us the illusion of control.’”

These are similar to arguments I made in It’s Not About You on Migraine.com, with the bonus of being rooted in academic research, rather than personal experience. Illness — whether curable or chronic, life-threatening or not — scares people. Blaming the patient is a way to allay these fears and allows the currently healthy person to believe they have the power to avoid illness.

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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.