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“Chronic Illness” & Being “Sick”: Disempowering Language?

People sometimes criticize me for saying I have a chronic illness or calling myself sick. They tell me it’s disempowering, that I’m being negative and limiting myself. I get the pop psychology behind the critiques and understand it may be helpful for many people to shed these labels. For me, however, it was crucial to embrace them.

I grew up believing I could do anything if I put my mind to it, that I could push through anything and succeed with hard work. For my first 13 years with chronic migraine, I did just that. I was laid up by “bad headaches” at times (sometimes for weeks at a time), but mostly I took drugs and soldiered on. Then the migraines got so bad that I could no longer pretend I was OK.

I felt like such a failure. Not only did I have horrendous head pain every day, I thought I was to blame for the changes in my life. I thought if I had been strong enough or worked hard enough, I would be able to live a normal life.

Many years later, I can tell you I was wrong. It took me a long time to believe that. First, I had to deprogram myself from all the brainwashing I’d done. Before I could do that, I had to open my eyes to the fact that I had a disabling illness. I had to accept that I had done nothing wrong and I had not failed. I had to believe it was possible for an illness – even one that included headache as the primary symptom – to be debilitating. I had to see that, while I could influence my health, it was ultimately beyond my control.

So, it’s been important for me to acknowledge that I can’t do some things because of migraine. It’s been vital for me to accept that migraine can be incapacitating. It’s been necessary to see my “failures” not as my own failings, but as a natural consequence of severe illness.

Despite what some people read into my language choices, I do not see myself as a victim. I do not seek pity. I do not believe migraine has ruined my life. I do not solely identify with illness (it’s part of me, but by no means all of me). My ego does not rest on having a chronic illness or being sick.

Maybe some people do have their identities intertwined with illness and need to shake it off to become psychologically healthy. That’s not me. Validating my experiences and emotions – rather than ignoring reality – has let me find peace in life with illness. That sense of peace was maddeningly elusive in the years I denied the truth.

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Acceptance of Migraine, Chronic Illness

In Acceptance, Not Resignation on Migraine.com, I think I’ve finally captured how empowering it has been for me to accept that I have chronic migraine rather than constantly fighting against it. As with most of what I write for Migraine.com, this piece is migraine-focused, but it could apply for any headache disorder or, really, any chronic illness. An excerpt:

I have given up on the idea that my life can only be good if I’m migraine-free. And by accepting that I will always have migraine, I have lessened it’s control over me.

By accepting that migraine is here to stay, I have stopped waiting to get my life back. Instead of wishing and waiting to feel better before I can laugh and play again, I’m more able to enjoy all that I do have and can do, even (or maybe especially) the small pleasures.

This may be my favorite post ever, not for my writing, but for everything the post represents. It seems paradoxical, but accepting migraine as a chronic illness that will always be with me has improved my life immeasurably. I’ve written about it before, though this is the first time that I feel like I really got to the heart of it.

What do you think of acceptance? Has it helped you? Or do you think it’s an absurd idea?

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An Ideal Day, Migraine-Free or Not

National Migraine Awareness Month Blog Challenge, Day 9: “Daydream Believer.” Describe your dream day — without a migraine to hold you back.

Describing an ideal migraine-free day is empowering for many people, bolstering their hope and motivation. For me it is distressing, as it threatens the acceptance of my illness that I’ve fought so hard for. Part of accepting that I have chronic migraine and chronic daily headache has been understanding that I may never again have a headache-free moment. I do not strive to be pain-free, but to live as well as possible given my circumstances. This doesn’t mean I’ve given up my search for relief — I will be overjoyed if treatments ultimately result in the cessation of my headaches and migraines — but that I can be happy even though I have migraine and chronic daily headache.

I try to make each day as perfect as possible. If a migraine attack dominates the day, “perfect” may be getting settled on the couch with a good book. On other days, I seek to do what I need or want to do in the time I feel well enough to do so. If I waited to be migraine-free to enjoy my ideal day, I would stew in resentment until it arrived. I try to make every day, however mundane, as daydream-worthy as possible. That’s one of the beautiful, torturous lessons of chronic illness.

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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Making Peace With Pain: Accepting Migraine and Chronic Daily Headache in My Life

Accepting that I may have a migraine or headache every day for the rest of my life is the most effective treatment I’ve had. But how did I get here and what does acceptance mean, exactly? Time. I know, not an encouraging answer, but where I am now is worth all the time it took to get here.

After my occipital nerve stimulator proved ineffective in January 2004, I was devastated. What I thought was my last chance at treatment had failed. Feeling like you have nothing left can suck you into a dark hole. It can also be the motivation necessary to claw back to an enjoyable life even if chronic daily headache and migraine are going to stick around. Most likely, it will be both.

For more than a year, I wrapped myself in the sadness and hopelessness that enveloped me. Mourning losses from my illness was necessary, but I wanted my life back. Even one full of pain and exhaustion was preferable to where I’d sunk. I was finally motivated to find a happier way to be.

Reading The Anatomy of Hope by Dr. Jerome Groopman played a crucial role. He writes: “Hope is the elevating feeling we experience when we see – in the mind’s eye – a path to a better future. Hope acknowledges the significant obstacles and deep pitfalls along that path. True hope has no room for delusion.”

Until then hope was believing I’d find a miracle treatment. Groopman taught me that hope is knowing a happy life is possible even with illness. Finding the joy in everyday life is far better than clinging to desperate desire for a magic cure.

Instant change didn’t follow my aha! moment, but put the process in gear. Now I have days where the thought “I love my life” jumps unbidden in my mind. That never would have happened four years ago. I still have plenty of days that are horrible, but hope lurks even on days I don’t think I can handle it anymore. When I feel OK, I really do try to seize the moment, as the cliche goes. Corny yet true.

The following books have helped me along:

  • The Anatomy of Hope by Jerome Groopman – The first time I read this, it was just an interesting collection of essays; the second time I “got it” and took the messages to heart. That was when I was first beginning to accept headaches as a permanent part of my life.
  • All in My Head by Paula Kamen – A memoir and great information source on chronic daily headache. She recommends Chronic Illness and the Twelve Steps by Martha Cleveland for accepting illness. (Kamen is also a contributor to the New York Times’ migraine blog.)
  • The Chronic Illness Workbook by Patricia Fennell – The same idea as the 12 steps book, but with less of a spiritual focus and is more methodical (for lack of a better word). I prefer this one.
  • Kitchen Table Wisdom by Rachel Naomi Remen – In the self-help/inspiration genre without being over the top pushy or mushy. The thoughts it provokes have been vital to my acceptance of illness. My copy currently has 14 bookmarks in it.

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New York Times Migraine (and Chronic Daily Headache) Blog

Launched last week, the New York Times’ new migraine blog provides patient and expert perspectives on migraine and chronic daily headache. From the first two posts, it looks to be an excellent addition to the growing community of headache and migraine blogs.

“Philosophical resignation” is how author and migraineur Siri Hustvedt describes her acceptance of migraine as part of her life:

Our media fetishizes the heart-warming stories of those who, against all odds, never lose hope and fight their way to triumph over poverty, addiction, disease. The person who lies back and says, “This is my lot. So be it,” is a quitter, a passive, pessimistic, spineless loser who deserves only our contempt. And yet, the very moment I stopped thinking of my condition as “the enemy,” I made a turn and began to get better. I wasn’t cured, wasn’t forever well, but I was better.