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On Suffering and Chronic Illness

While I don’t like to be called a migraine sufferer, What Suffering Does, a NY Times op-ed by David Brooks, resonated deeply with my experience of chronic illness.

There’s the awareness that despite desperately wishing for things to change, illness is not an issue of mind over matter:

[S]uffering gives people a more accurate sense of their own limitations, what they can control and cannot control. When people are thrust down into these deeper zones, they are forced to confront the fact they can’t determine what goes on there. Try as they might, they just can’t tell themselves to stop feeling pain, or to stop missing the one who has died or gone.

The recognition that loss of control doesn’t have to equal helplessness and that we do have control over how we respond to strife:

They are not masters of the situation, but neither are they helpless. They can’t determine the course of their pain, but they can participate in responding to it. They often feel an overwhelming moral responsibility to respond well to it… placing the hard experiences in a moral context and trying to redeem something bad by turning it into something sacred.

“Moral responsibility” and “turning it into something sacred” sound like they’d require grand gestures that are beyond the ability of someone with a debilitating chronic illness, but many of us turn our suffering into something sacred in the everyday. We do it by keeping others in our thoughts or prayers, by not judging someone whose behavior is changed by illness, by reassuring the friend who is new to chronic illness that she’s doing everything right, by telling the person who pays for prescription drugs out-of-pocket about drug discount cards and prescription assistance programs, and in millions of other ways.

The line from the op-ed that most spoke to me was,

Recovering from suffering is not like recovering from a disease. Many people don’t come out healed; they come out different.

By definition, chronic illness is not something a person heals from, but it certainly changes everyone who lives with it. It’s up to each one of us to decide what that change will look like in our own lives. I will never say chronic illness is a gift, but I do like who I’ve become because of it.

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What a Difference a Decade Can Make

One of my favorite pieces of writing (both the process of writing it and the final outcome) went up on Migraine.com over the weekend. Entitled, I Am Not a Migraine Sufferer, I Am Not a Victim, it begins,

“Do not call me a migraine sufferer. I have an illness called migraine, but I do not suffer from it. Having migraine is not a choice, suffering from it is. Suffering is an emotional reaction, a decision someone makes to allow the difficulties in their life to cause mental torment. I cannot avoid the physical and emotional pain of migraine, but I can choose how to react to it.”

Some readers said that the post was belittling or shaming people who don’t think the same way I do. That was absolutely not my intent, but it got me wondering if I would have reacted with anger if I’d come across the same post. Then I remembered the time, 10 years ago almost exactly, when I saw an article from Oprah’s magazine called Living With Pain being praised on a migraine forum.

Reading it enraged me.

I was in the most desperate place I’d been to that point (though I’ve been far more desperate since then) and the ways the author described coping with chronic migraine, tension-type headache and cluster headache seemed like total bull. I’m pretty sure I thought that her pain couldn’t possibly be as severe as mine, that no one could possibly have that attitude with the sort of pain I endured.

Today I am laughing at all the similarities between my attitude and the one the writer of the Oprah article describes. I’m not sure where or when or how I picked it up, but I’m unbelievably grateful that I did.

It is this attitude that I believe has kept me going, even when I couldn’t fathom how I’d get through another day. It is why I finally had a migraine-free day after at least 12 years of daily attacks. It is what compelled me to investigate an essentially unheard of migraine treatment to discover one that actually helps me. It is why I’m so happy to have days with only head pain and why level 4 migraines aren’t a big deal (well, that and the perspective that comes with having been housebound and bedridden from migraine).

If I want to find the joy in life, if I want to continue to reduce the frequency and severity of my migraines, I cannot think of myself as a sufferer. This is not because migraine (or any headache disorder) is trivial or insignificant, nor does it mean I am without grief and anger about what it has done to my life. For me, thinking of myself as a sufferer is a short step away from believing there is nothing worth living for. There are plenty of ways debilitating chronic migraine pushes that belief all on its own, I don’t need to add any more fuel to the fire.

This is what works for me personally. Going by the number of likes and shares my post got, I am not alone. Still, this way of thinking doesn’t work for everyone. I understand why; I’ve been there myself.

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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?

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Obsessing Over Headache or Migraine Triggers

Most articles on migraines focus on what patients can do to avoid headaches. This is great for getting us involved with our own care, but it’s also one more reason to feel guilty or at fault. You know, when your head is screaming and you’ve got the running commentary going:

“What did I eat today? Was it the chocolate chip cookie, the garlic bread, the grapefruit juice . . .? Oh, I bet it was the hot dog at the baseball game. I can’t go to a game without getting a hot dog. That’s un-American. Did I eat enough today? Maybe I went too long between meals. Or didn’t drink enough water. Was that latte really decaf? Could it be that something in the decaffeinating process triggered my headache? I thought they used Swiss Water Process. Did I stay up too late talking with friends? Spending time with people I love reduces my stress. Don’t I get credit for trying?”

Headache sufferers spend so much time, well, suffering. It’s silly to waste what energy we do have hating ourselves for bringing on our headaches. Because we don’t bring them on ourselves. We can’t expect our families, friends or co-workers to understand this if we constantly blame ourselves for our pain.

You can control parts of your environment. It’s probably not a good idea to eat a particular food when you’re 99% sure it’s a trigger. But you’re not to blame for wanting to enjoy your life when you can. Maybe you could have avoided the headache, maybe not. Once in a while happiness has to outweigh pain.

When I’m in the grip of horrendous pain and furious with myself because I ate the wrong thing or did the wrong thing, I try to remember that I don’t have headaches because I’m bad. OK, maybe this particular headache was triggered by lack of sleep, but this illness isn’t my fault.

It’s stressful to be angry with yourself. That’s a migraine trigger all on its own.

I wrote this in August 2005 and am not sure why I never posted it. I found it, so here it is.

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Baby Steps to Minimize the Impact of Migraines & Headaches

“I’m not happy” is what my friend’s three-year-old says when another kid has something he wants. Whether he’s eying a root beer or the rocking chair, this simple statement expresses so much. Obviously something has to change to make him happy, or at the very least, not unhappy.

Since hearing him say this, I’ve replaced specific complaints with “I’m not happy.” Instead of feeling helpless in the face of pain, sensitivity to touch or any other symptom I have, another goal occupies me — to not have whatever is going on in my body or mind make me unhappy.

I can’t make any of my symptoms go away, but I can minimize their impact. I distract myself from pain by reading, listening to music (quietly) or focusing on how I’m breathing. When sensitive to touch, I sit up so nothing touches my head.

Doing what it takes to make myself not unhappy is so much easier than wrestling with Big Issues. Yes, having migraine is horrible. Worrying about it is useless. Making myself suffer even a little less is more than worthwhile.

I can’t make my migraine and chronic daily headache go away, but I can make living with them not so hard.