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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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Pushing Through Migraine Attacks… More Harm Than Good?

What would happen if, as soon as I noticed a migraine coming on, I took meds and rested instead of pushing until I absolutely can’t do another thing and I’m beyond exhausted before sitting or lying down? “I’d never get anything done,” is my immediate response, and I’m guessing most chronic migraineurs would think the same thing. But what if the behavior I see as helping me cope with chronic migraine — pushing myself — is actually making my health worse?

What if resting at the first warning of a migraine would reduce the severity of that migraine attack? What if pushing myself to the brink actually makes the migraine attack worse? And beyond individual migraine attacks, what if my habit of constantly pushing myself to severe fatigue compromises my body and health in such a way that makes me have more frequent migraine attacks?

These are some of the thoughts floating in my head thanks to therapy and the article about validating pain that I wrote about last week. I have no answers, but asking these hard questions feels like a step in the right direction.

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Is it possible to validate one’s pain and still live a life beyond bed when you’re chronic?

“Short and simple, Validating Your Pain is the First Step to Getting Stronger by Danielle LaPorte is astonishingly powerful in its approach to pain,” I wrote yesterday. My first instinct was to tell you it is an absolutely must-read article for anyone with chronic illness. I even wrote, “Read it now. Right now. Really.” Then I let the ideas simmer for a while and began to question how they could realistically apply given the constraints of chronic illness and pain.

Head on over and read the post. It’ll only take a couple minutes and the ideas are intriguing. Then come back to read what I’m thinking about it and share your impressions.

I love, love, love the thought that people with chronic migraine, including me, might stop denying the reality and severity of this illness to everyone around them, even themselves. Pushing through despite our debilitating symptoms, pretending we feel better than we do, brushing off others’ concerns. . . These strategies seem like the only way to survive, to have some semblance of a life while also having chronic migraine. But they also lock us in a battle against ourselves, where we’re constantly denying how we truly feel physically and emotionally.

“Validating your pain is the first step to sanity, strength, and healing,” LaPorte writes. My therapist has expressed a similar message. I’m listening. And I really want to buy into what they’re saying. Yet, I cannot help but wonder how to follow their lead and still get anything done. Three of LaPorte’s points tied my mind in contradicting thoughts of “That would be amazing” and “How is that possible?” They are:

Endurance can be a very unwise choice. As inevitable as emotional and physical suffering is, it doesn’t always serve to make us stronger — sometimes it just wears you right down. Sometimes, the test of strength is to say “This isn’t working,” the millisecond it’s not working.

Believe your pain. It’s not a friend you want to invite over, but when it does show up, it always — always — brings you precious information about what’s best for you.

Dare to be high maintenance. I bet you’re invincible in many areas of your life. But when you need it, ask for special treatment.

It is a good time to note that LaPorte does not have chronic pain, but extreme sensitivity to dental work. She’s talking about validating her pain a couple times a year. Applying her ideas to the daily life of chronic illness is so seductive. Imagine recognizing (and stopping) every time you’re wearing yourself down by trying to push through, listening to your body’s signals and resting accordingly, asking for special treatment. Sounds blissful. And utterly inconceivable, a life-sentence of confining yourself to bed.

Still, I want to believe that these concepts can apply to some degree and improve life with chronic migraine. I want to validate my pain and listen to my body, ask for help when I need it. For LaPorte, honoring her body and her needs leads to an effective treatment for her pain. Many chronic migraineurs don’t have the luxury of surefire way to manage their pain, nausea, dizziness, vomiting, photophobia, and numerous other migraine symptoms. Admitting our pain doesn’t get us a numbing agent, it just takes us away from living our lives.

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Migraine Down, Motivation Way Up

I often worry that even if my migraines were under control, I still
wouldn’t accomplish anything. That the problem isn’t my illness, but
that I’ve become lazy. The last three days have shown me just how much more motivated I am when I don’t have a migraine and my headache is mild.

I’ve taken care of many tasks that hang over me but I usually don’t have the energy for. Even now, with the house picked up and all my phone calls made, I’m looking for more to do.

The voice in my head is saying, “You need to rest. You feel great now, but will crash — hard — if you keep pushing.” I’m proud of that voice. It took so long for it have a permanent spot in my head that I truly appreciate the reminder. I’d listen to it if I didn’t know that a migraine could make my head explode and steal my energy and mind at any moment.

What a relief to know that migraine and chronic daily headache haven’t permanently snatched a integral part of my personality. Maybe they’ve made me appreciate it even more and have (almost) taught me to back off before I overdo it. I’m not ready to give it the Pollyanna treatment, but maybe, just maybe, there are some hidden blessings in this illness.

I’m going to try to listen to the wise voice in my head now. I need to eat a sweet and then will snuggle up with Harry Potter. I encourage you to relax and enjoy your weekend too. Taking care of yourself can be magical.