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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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Empathy Animated (& the Trap of Silver Lining Zombies)

Bren√© Brown‘s insight on the difference between empathy and sympathy has been animated into an instructive, informative, funny and adorable short video.

In case you’re like me and would rather read the gist than watch a video, here’s an excerpt (though I do recommend the video highly!):

“Rarely, if ever, does an empathic response begin with ‘at least.’ … Someone just shared something with us that’s incredibly painful and we’re trying to silver line it. … One of the things we do sometimes in the face of very difficult conversations is we try to make things better. If I share something with you that’s very difficult, I’d rather you say, ‘I don’t even know what to say right now, I’m just so glad you told me.’ Because the truth is, rarely can a response make something better.”

As soon as I saw this a couple months ago, I knew I wanted to share it with you, but not what I wanted to say about it. The thought I keep coming back to is not about connecting with others through empathy rather than sympathy, but with myself.

I cannot count the number of times I’ve been angry or sad about migraine and chronic daily headache and tried to make it better with “At least…” This wasn’t an exercise in counting my blessings, but in telling myself that what I feel doesn’t matter.

Silver lining my grief never made it go away, it just hid it for a while. Burying emotions doesn’t get rid of them permanently, it turns them into zombies that continually rise from the dead. Unlike zombies, for which there are surefire methods to eliminate, buried emotions return endlessly, becoming increasingly difficult to suppress.

Thanks to this animation, I now stop whenever a thought begins with “At least…” I then tell myself what I promised to say to others — “That’s awful, I’m so sorry.”

Guess what? It works.

Simply acknowledging that what I’ve been through is awful eases the pain more than I could have imagined. It serves me far better than silver lining the zombies ever did.

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Compassion for a Friend Easier than Self-Compassion

Self-compassion is something I’ve been trying to develop for a while. I’ve definitely made progress — Toni Bernhard’s suggestion to imagine what you would say for a friend in your situation has been invaluable — but I still slip back into self-criticism.

When a friend was sidelined by severe back pain this summer, pain that wouldn’t let up no matter how faithfully she went to physical therapy, did her exercises, used her TENS unit, or applied ice, I got an interesting perspective on Toni Bernhard’s advice. Instead of criticizing my friend, thinking she needed to exercise or rest more or work harder to feel better, my immediate response was to think how unfair it was that she wasn’t getting better even though she was following all the rules.

Based on my experience with migraine, if I’d have had that same back pain, I would have been overwhelmed by self-criticism, wondering what I’d done wrong, thinking I’d be able to overcome it if I tried hard enough, thinking I was lazy and weak. Why is it so much easier to have compassion for others than for oneself?

Read more in Compassion for a Friend Far Exceeds Compassion for Myself on Migraine.com.

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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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Mediation & Self-Compassion: Suffering is Optional

I keep talking about how my migraines have improved, though my migraine diary for December appears to tell a different story. I had at least a level 7 migraine 17 of the first 18 days of the month. Those can be explained by bad weather, Botox injection aftermath, and more bad weather. Just when the weather stabilized, I came down with some lingering low-level virus that has kicked up the migraines, made me nauseated, and drained all my energy. That appears to have finally lifted, so I hope I’m on the upswing. All this and I still say I feel better. Partly this is relative — it doesn’t take much to improve on the migraine hell I was in — but it is more that I have learned how to limit how much I suffer from migraine.

“Pain is inevitable. Suffering is optional.” Through meditation, the simple truth of this statement has woven itself into my life: Suffering is not in the pain itself, but in how we react to pain. Understanding these words and truly embracing their meaning take much practice. I have only just begun this practice, but the relief it has brought me is tremendous.

Since I began meditating in earnest in April, I’ve learned to just be with my illness instead of constantly thinking about it and evaluating it. I’ve learned to turn off the critical internal dialogue that has always accompanied migraines, the one that tells me I’m faking it for attention and letting other people down. I finally learned that I am worthy of the love and understanding I so readily give others; that self-compassion is, in fact, a necessary foundation for caring for others.

To figure all this out, I set aside my aversion to all things spiritual/religious and listened to guided meditations and Buddhist teachings and read about applying Buddhist concepts to chronic illness. (So far, Buddhism feels more like psychology than religion to me.) I’ve culled resources from all over the internet and from multiple libraries. The most accessible and helpful (for me) include:

I recommend the first three as audiobooks. I have listened to each one multiple times, often during a migraine. They are calming and easy to fall asleep to. I like to think that my mind is mulling over the concepts while I sleep. Those are good general approaches to healing. How to Be Sick is an invaluable resource for learning to minimize the suffering of chronic illness. It includes detailed examples of how to apply different principles to particular difficult situations common to people with chronic illness (like losing friends and feeling isolated or dealing with the disappointment of failed treatments).

Have you found meditation to be helpful in dealing with your own migraines or headaches? What other techniques helped you accept your illness?