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Migraine Activism: How Do We Make People Care About Migraine?

“Yoda is wrong. There is only try.” I posted this on my personal Facebook page with a link to my Migraine.com piece in the hope that some of my Star Wars-obsessed friends would be intrigued enough to read the post. I want people to understand that not everyone is healthy and limited by their own perceptions. That for some people, including me, a person most of my Facebook friends care about, trying really is all there is.

The next, unrelated status update in my Facebook feed read, “Are you avoiding talking about race because it makes you uncomfortable or because you just don’t care?” “Huh,” I thought, “I don’t talk about race because I don’t have the mental or emotional energy to do so.” Because I don’t face racism on a day-to-day basis and instead spend my life trying to manage a debilitating chronic illness, the topic doesn’t come up for me much. On the rare occasion I’m having an intellectual debate, race may be mentioned, but it isn’t part of my daily life (nor are intellectual debates these days).

Answered in the frame of my friend’s binary question, I don’t talk about race because I just don’t care. That is so not true.

Everyone has a “cause” they want other people care about, whether it is race, homophobia, autism, or migraine. Yet, every “target” of a movement or campaign has a finite amount of energy and attention. We care most about what has the greatest impact on our own lives. This isn’t selfish or uncompassionate, but a matter of allotting our limited resources to cope with this incredibly difficult task called life.

I want nothing more than for people to understand how severe migraine can be and the emotional and physical toll it can take. I want this not only for patients and their loved ones, but for society as a whole. My friend probably has similarly ambitious desires related to race. Yet, instead of energizing me to action, her comment left me feeling guilty because my daily struggle keeps me from pursing other important problems.

We can’t guilt people into action, nor can we force other people to take up the fight for an issue that doesn’t impact their daily lives. How, then, do we get non-migraineurs to care? This is an issue I discussed many times at the American Headache Society symposium in November and every conversation raised more questions than solutions. I’m working on a list of ideas, which I will share soon.

In the meantime, I want to hear from you: What do you do to help non-migrainuers understand the potential severity and debility of this illness? What other things could be done, whether by you, patients and their families, advocates, or headache specialists? How do we make people care about migraine?

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Leaving One’s Body to Survive Severe Migraines

After two months of my pain topping out at 5 most days and 6 every once in a while, a level 7 migraine hit in the early hours of Monday morning. What surprised me most is that only two months had passed since I’d had that much pain — it felt much longer. In that time I tried to remember what level 7 and higher pain felt like and how I managed to survive it. Because, while 5 and 6 pain isn’t bad compared to what it could be, it is definitely uncomfortable. I couldn’t fathom how I handled worse pain. The difference, I realized Monday, is that when the pain is 7 or higher, I leave my body. I dissociate and a quiet stoicism sets in.

Over the years, many people have recommended that I “go into” or “stay with” the pain. That trying to escape the pain actually worsened the sensations that I felt. Only by being present with my pain, according to this philosophy, would it ever lessen. To them there was a direct correlation between one’s ability to be with pain and the amount of pain that one felt. That is, if you stay with the pain, the actual physical sensation will lessen. From my experience, being present with the pain in mindful meditation improve the ability to emotionally cope with the pain, but not the amount of physical pain itself.

Furthermore, the body can only handle so much. The sense of leaving one’s body while experiencing severe pain is a natural coping mechanism. This dissociation is the body’s way of preserving itself.

Take a look at the upper levels of the TIPNA comparative pain scale, which I’ve excerpted below. The emphasis is mine.

Level 6
Strong, deep, piercing pain so strong it seems to partially dominate your senses, causing you to think somewhat unclearly. At this point you begin to have trouble holding a job or maintaining normal social relationships. Comparable to a bad non-migraine headache combined with several bee stings, or a bad back pain.

Level 7
Same as 6 except the pain completely dominates your senses, causing you to think unclearly about half the time. At this point you are effectively disabled and frequently cannot live alone. Comparable to an average migraine headache.

Level 8
Pain so intense you can no longer think clearly at all, and have often undergone severe personality change if the pain has been present for a long time. Suicide is frequently contemplated and sometimes tried. Comparable to childbirth or a real bad migraine headache.

Level 9
Pain so intense you cannot tolerate it and demand pain killers or surgery, no matter what the side effects or risk. If this doesn’t work, suicide is frequent since there is no more joy in life whatsoever. Comparable to throat cancer.

Level 10
Pain so intense you will go unconscious shortly. Most people have never experienced this level of pain. Those who have suffered a severe accident, such as a crushed hand, and lost consciousness as a result of the pain and not blood loss, have experienced level 10.

For more than a year my pain was rarely less than a 7 and hit 8 or 9 nearly every day (migraine isn’t mentioned in 9 on the scale, but these were 9s for sure). By this scale, I was basically in childbirth for more than a year. “Going into” pain that severe and frequent will certainly stop the pain — because it will result in suicide.

Dissociation (and its cousin distraction, with which it pairs well) are powerful tools for coping with migraine. Tools that others may believe we are weak or not trying hard enough when we use them. Even if the shame isn’t outright, so many migraineurs seem to internalize such messages and gnaw on them as guilt.

Forget the shame and guilt. Use every possible tool available to you to get through a migraine spell. Leaving your body for a while when you’re in massive pain isn’t harmful. Getting caught up in a book or movie isn’t going to make your migraines worse. Dissociation and distraction are lifesavers. Literally. Trust me on that one.

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Lessons on Living With Illness From a Young Woman With Cancer

Suleika Jaouad, a 23-year-old writer who was diagnosed with leukemia last year, has been sharing her experiences on Life, Interrupted, a New York Times blog. Though cancer is dramatically different from migraine, many of Jaouad’s candid, insightful reflections contain lessons that can be applied to any illness. Fighting Cancer, and Myself, is particularly poignant through the lens of chronic illness.

I’ve decided that the real battle I need to fight is against this win-lose mentality. During the past few months, I’ve been fighting myself in many ways, succumbing to fear and anger about not being able to do what I once could.

But today I’ve decided that my challenge will be to develop a new brand of acceptance. Cancer has taught me that you can’t fight your way out of every problem. The solution is not to charge full speed ahead. It’s counterintuitive, but I try to remind myself that chemotherapy, too, is illogical on its face; you are poisoned in order to be cured.

I realize now that the experience of having cancer is more of a tricky balancing act: being proactive about your medical condition, while simultaneously accepting and surrendering to the fact that, at least for the time being, you can’t change your reality as quickly as you’d like to.

Acceptance is not giving up — far from it. But like a prisoner in handcuffs, you only waste precious energy by trying to wriggle your way free. With cancer, the best way out may just be patience.

Like cancer, migraine is often framed as war. Constantly fighting a force within oneself can lead to animosity and self-hatred, as well as blaming oneself (trust me, I know). Without compassion for yourself, illness provokes a constant internal battle that is unwinnable. I fought it for years and am still trying to emerge from the rubble.

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Showing Others What a Migraine Attack is Really Like

Migraine Awareness Month Blogging Challenge #26: “From the Outside Looking In” — Write about what you think your family, friends and others think a day in life, a day with migraine disease is like.

This is the perfect time for me to reflect on what my life with migraine looks like to others. I’ve just returned from a long weekend in Minnesota, where Hart and I traveled for a wedding and to visit dear friends and family—many of his college friends, his sister, our closest friends from Seattle and my best friend from college. I spent much of the weekend in bed, though I made it out most evenings and managed to see everyone except my best friend from college. What was unique about this trip is that I was stuck in bed even though the pain never got above a level 6.

(Background: The longer people have known me, the less I have let them see how disabled I am. Counterintuitive, I know, but it has only been in the last three years that I’ve really let people see how sick I am. And by “people,” I mean everyone, including Hart. Including myself. There are many reasons for this, but two rise to the top of the list. First, I deluded myself into thinking I wasn’t as sick as I am by hiding from myself how debilitating the migraine attacks are. It was as if admitting how sick I was would somehow make it harder to improve my health. That if I couldn’t push through the attacks as I did for so many years, then something was really wrong with me. Also, I was ashamed of being sick and couldn’t shake the feeling that I was faking it. If being sick was a mindset, as I have so often been told, wasn’t my inability to get better a sign of weakness? Besides, how could a headache make me feel faint, weak and dizzy and make my knees buckle?)

I think most people I know understand that I am in terrible pain during most migraine attacks. I have been much more open about that aspect of the migraines in recent years and even began sharing my pain ratings. They also recognize the burden of nausea, because it is a relatable symptom, and photophobia, because I always wear TheraSpecs migraine glasses. [disclosure: I’m the co-owner of TheraSpecs]

I’m not so up-front about the less tangible autonomic symptoms—they are more difficult to describe and, even now, I’m still skeptical of their validity. Thursday night I was at the science museum with friends when my knees began to buckle and I thought, “Come on. Is this migraine really so bad that I can’t even stand up?” Yes. The answer is YES. Even I, a so-called patient advocate and the one experiencing the symptoms, could hardly believe it.

My college friend and I were scheduled to spend Friday together. It took me 30 minutes to gather enough strength to get out of bed. As soon as I did, my knees began buckling. I literally could not stand up. We rescheduled for Saturday. I awoke Saturday completely exhausted and nauseated, so I rescheduled for Sunday. Sunday I was so weak that I couldn’t even get out of bed. So I didn’t get to see my friend at all. The guilt is tremendous, especially because I still feel like I’m making up for being too sick to fly to go to her wedding three years ago. Also because I find it difficult to believe that the non-pain symptoms of migraine can be so bad that they keep me bedridden.

I’ve been struggling with this the last few months, actually. Even though I intellectually know better, I still tend to think of pain as the primary component of migraine. Since the pain has let up some since starting magnesium and, more recently, beginning to take Amerge at bedtime to reduce the severity of my middle-of-the-night migraine attacks, the autonomic symptoms have been more prominent. I assume they’ve always been present to the same degree, but pain overshadowed them. I can hardly grasp the impact of these symptoms myself—there’s no way I can expect my friends and family to understand them.

To answer the question, my friends and family probably think a day in the life with migraine is full of pull-your-hair-out pain, gut-wrenching nausea and recoiling from light. Some days are like that, though I’ve had far fewer of those in the last six months than the previous 10 years. Other days I physically feel like I have the flu and spend the day reading. Since I adore reading and migraine kept me from doing it for four years, those days aren’t too bad. Cancelling plans is particularly frustrating, though, because I think I should feel well enough to go out if I’m not in horrendous pain. (Should. Now that’s a word I’d like to strike from my vocabulary.)

These are just descriptions of my migraine days. There are similarities among migraineurs, but we’re all different. What are your migraine days like? Do your friends, family and coworkers see them as they really are or do you put on your game face?

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger’s Challenge is initiated by Fighting Headache Disorders.

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A Letter to Myself: Replacing Guilt, Shame & Self-Hatred With Love, Compassion

Migraine Awareness Month Blogging Challenge, Day 13: “You Are Beautiful” — Write yourself a love letter. Tell yourself how wonderful you are. Remind yourself of the things you have accomplished despite migraines. There are times when we need to be reminded of the good things about ourselves that others see that we may have missed.

Dear Kerrie,

Today you are hunched over on the couch, weak, nauseated and in pain with a throbbing head and hyper-alert senses. Many days are like this, though fewer than even six months ago. All those things you are worried about — not calling your niece on her birthday, missing physical therapy yesterday, not updating The Daily Headache or Facebook frequently enough, not figuring out Twitter etiquette, not calling your mom or sister or friends… — none of these change who you are fundamentally. You are still bright, caring, loving, ambitious, eager, strong-willed, kindhearted and funny. Migraine may prevent you from engaging in life and with other people as much as you would like, but it doesn’t mean you are selfish, self-centered, lazy or weak. No one loves you any less for your behavior (or lack thereof); your family and friends know who you are and that your illness dims your light. They do not feel slighted, they only wish you felt better. Now it is time for you to embrace their understanding and love yourself with the same compassion.

This is a perfect day to write this letter. Your mental ability is so compromised that you aren’t censoring yourself or even editing this post. Tears are running down your face as you write because you know you are right. You are loved and lovable whether or not you have chronic migraine — perhaps in part because you have chronic migraine. Do not hate or berate yourself for being sick. It is not your fault.

Your lack of connection to the outside world, your lack of accomplishment and productivity are not a reflection of your ineptitude. In fact, the amount you have accomplished, the degree to which you seize the day are remarkable considering how disabled you are. Take some of that overflowing compassion and empathy you have for others and give it to yourself. You deserve it. So very much.

I love you and am amazed by your ability to function with such a debilitating illness. That you maintain such a positive attitude sometimes astonishes me. Release the guilt, shame and self-hatred and you will be amazed by your strength and inner beauty.

All my love,
me

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger’s Challenge is initiated by Fighting Headache Disorders.