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Stumbling Upon a Therapist

“It seems to me you have two equally important things going on: chronic migraine and grief about what chronic migraine has meant for your life.” With those words, the naturopath I saw Friday became my new therapist. Although I knew before the appointment that she practices as both a therapist and naturopath, counseling was not on my agenda. However, anyone who can see so readily that the emotional component of chronic migraine has affected me as deeply as the physical illness is someone I need to talk with.

Throughout the two-hour initial appointment, I kept mentioning things I wrote about last week. Like that the emotional toll of chronic migraine is enormous. That almost all my emotional and physical strength goes into taking care of myself, thus continuing my isolation from others. That I’m envious of successful women my age because I believe I, too, should be able to support myself and pursue my dreams. That for the first 10 years of chronic daily headache, no one believed I had a physical illness. Although I told the naturopath repeatedly that I’m so much better off emotionally now than I was a few years ago, the fact that everything I just mentioned was so fresh in my mind that I felt the need to write about it just last week indicates I’m not as “over it” as I thought I was.

I’ve been to therapists in the past, some of whom have been helpful with other issues, but no one seemed to really get what it means to for a young, intelligent, ambitious woman to be rendered housebound by a debilitating chronic illness. (The last one I saw thought I needed help setting goals and following through with tasks. If only it were that simple!) I’d thought this was a failing of the therapists, but now I wonder if the problem was in how the appointment was structured.

Every time I see a new therapist, I introduce the role of migraine in my life by describing all the ways I try to live a good life despite chronic illness. I always came out looking strong and motivated. I wasn’t misrepresenting myself, but was focusing on the positive — because who wants to meet anyone new and tell them all the bad stuff right off the bat? Besides, unless I’d just had an acute emotional crisis, the hard parts are rarely at the top of my mind. Usually such a crisis would spur me to make the appointment, but by the time I saw the therapist three or four weeks later, I’d moved on.

Meeting with the naturopath was more like a standard medical appointment. I started describing my symptoms and what my life looks like with migraine as such a large component of it. Because I wanted to convey the gravity of the physical experience (though I made sure to tell her that I’m so much better than I used to be), I was willing to address unpleasant aspects I’ve held back from therapists in the past.

I’ve long advocated for people with chronic illness to see a therapist, though I readily admit finding someone who understands the complexities of it is difficult. The best advice for finding a good therapist I’ve been able to give is to ask your doctors. But I’ve also always assumed the therapist sets the tone for the sessions. Maybe the person who is receiving counseling is responsible for determining the conversation’s course.

Based on my very recent experience, I’m going to change my recommendation. Yes, ask your doctor and check Psychology Today for therapists who specialize in chronic illness, but also keep a running list of issues that are bothering you. Perhaps write in a journal and see what comes up — I often don’t know what’s eating at me until I see the words written on the page. The most intuitive therapists may be able to figure out what you need to talk about all on their own, but you’re the only one who truly knows what’s bothering you.

I’m writing this advice as much for myself as for anyone seeking guidance on getting the most out of talking with a therapist about chronic illness. I’ll let you know how it works out after a few sessions.

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The Migraine Thief Breaks My Heart

My oldest niece has been accepted to the college of her choice. I’m so, so proud of her and excited for the adventures awaiting her. And I’m crying because I missed her middle and high school years. Debilitating chronic migraine robbed me of the chance to watch, and help, my niece grow up.

Much of what migraine has taken from me I can still have — the career, time with friends, travel — but kids don’t stop changing. There’s so much I wanted to do and be for my niece and her sister and brother. Yes, they know I love them and that I’d visit and call more if I could (at least as well as kids can understand the havoc chronic illness wreaks on an adult’s life), but I wanted to be present as they grew up. I wanted to watch them mature from kids to preteens to teenagers to young adults. I wanted to be an adult they could call for help navigating the perils of adolescence.

The opportunity hasn’t completely passed me by. I truly believe I’m on a path to more migraine improvement. My oldest niece is 17, the younger one is 15, my nephew is 13. Many chances remain for me to be in their lives, especially if I do continue to feel better. Still, I’ve missed so many years, so many pivotal experiences, so much growth and change.

I’ve said that I don’t think I could survive these years of horrendous migraines without my innate optimism. I can always find the silver lining. Not today. Knowing I may have good times ahead cannot make up for all that I’ve missed with these kids I love so much.

My heart is breaking.

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A Technique for Quieting Self-Criticism

Though I’m no public health expert, I feel well qualified to declare that self-criticism an epidemic among migraineurs. We blame ourselves for migraine attacks, berate ourselves for canceling plans, criticize ourselves for not keeping up with housekeeping. Actually, this negative self-talk seems pretty common among people with any kind of chronic illness. Toni Bernhard, author of the superb book How to Be Sick, recommends asking yourself what you would say to a friend who was criticizing herself in the same fashion.

In Befriend Yourself to Silence Self-Criticism, I wrote about her technique, then shared my experience of responding to my inner critic with kindness and compassion in An Experiment in Quieting My Inner Critic, both on Migraine.com. That was a few months ago and was so positive and uplifting that I’m still doing it. Such a relief for my mental health — I can’t recommend the strategy highly enough!


 

 

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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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The Eternal Asterisk of Chronic Illness

“Join us for dinner, I feel like cooking.”*
“Yes, get me a ticket for the baseball game.”*
“See you at yoga tomorrow.”*
*unless I’m too pained, dizzy or nauseated to do so

For about 10 years, this was the pattern whenever I’d make plans: My excitement would build as the dinner/concert/play/party approached. I’d spend the day resting, hoping to build energy reserves, and give myself a couple hours to shower and dress. The migraine pain/exhaustion/dizziness/nausea would persist despite my best efforts to supplicate it. I’d push myself and become distressed, and worry and panic would fuel the migraine. Angry, I’d crawl into bed (or sometimes collapse on the floor) and ask Hart to call our friends to cancel.

After years of disappointments — and lost friendships — from last-minute cancellations, I stopped making plans. The pattern was just too painful to repeat. I withdrew further into the isolation of chronic illness, dragging my husband in with me.

Moving back to Phoenix, where my friendships are long-established, I began making plans again, knowing my friends would understand if I had to cancel and that, if we had couple plans, they’d welcome Hart even if I couldn’t come. So now I make plans with an asterisk. I’ll come to your party, meet you for tea, go to a mini high school reunion, as long as I’m up for it. I still don’t like rescheduling and am reluctant to buy tickets for events that I’m not sure I can make, but I am no longer ashamed or embarrassed when I have to stay home.

Shame or guilt were only part of the problem. If I couldn’t go out, I felt like I was letting migraine win. Like my default mode was healthy and deviance was an anomaly. Truth is, my default mode is migraine (“chronic” might have been the first clue). I’d been too stubborn to see and too ashamed to admit that I was too sick to live a “normal” life. Coping with chronic illness isn’t a matter of winning or losing, but of being honest with myself. And that may be the biggest challenge of all.