By

Migraine as Solitary Confinement, Controlling Lover

A non-migraineur who was close to the young woman who took her life a couple weeks ago, but didn’t know how much she was suffering, emailed me after reading my post and expressed regret that they hadn’t been able to help her. I tried to describe the isolation of chronic migraine, but capturing the experience was nearly impossible. I likened it to solitary confinement. I also explained that no matter how much the chronic migraineur may want to reach out or how hard someone tries to reach in, there’s an invisible, impenetrable barrier. While this seemed to help the person I was emailing with, it still seems an inadequate description of how much chronic migraine can distance a person from their loved ones.

When my migraine attacks were at their worst, Hart and I knew our relationship was suffering. We both wanted to improve our marriage, but I couldn’t work on it. It wasn’t that I didn’t want to, but that I simply could not. The very basics of keeping myself going took all my attention and energy. No matter how much I love my husband and wanted to nurture our relationship, I had to focus on myself.

At that time, Hart compared the role of migraine in our relationship to a difficult, demanding child. I think of it more as a controlling lover. We could have worked together on parenting a child, no matter how unruly the child or how much we disagreed. Though he could help with day-to-day life and getting me to appointments, migraine was still my “thing” and drove a wedge between us that I couldn’t see past. Migraine dictated what I did at every minute of every day. It was all that I thought about.

Solitary confinement and an affair with a controlling lover are the best ways I’ve come up with to illustrate the isolation of chronic migraine, but I know there have to be a million other ways to describe it. What’s your analogy?

Update: Just stumbled upon a post from 2007 where I asked about headache metaphors. Read the informative responses in the comments.

By

Reader Newly in Love With Someone With Chronic Daily Headache Seeks Advice

A woman who has fallen in love with a man who has chronic daily headache has posted a comment asking for input on whether it is wise to stay in the relationship. Although I indulge in Dear Prudence during migraine attacks, I’m not an advice columnist myself. I’ll share my thoughts and would love for you to weigh, as I think anyone whose had a relationship and a headache disorder could provide a valuable perspective.

She wrote:

“I am divorced. I have met a wonderful man whom I love. However, he has had a headache non stop for 25 years. He has maintained a successful career and still works but has debilitating headache periods. I only know he feels bad when he tells me. But I’m starting to realize he feels bad all the time. I don’t understand how he’s not crazy. In other words it does not impaire [sic] dating. He says he feels better when relaxed. Tense work makes headaches worse. He’s been to the best headache clinics. We’ve been dating 5 months and got serious about a month ago. But I stress enormously about whether I have just fallen in love with someone that is disabled or will be. He’s just ideal for me except for the headache. I cannot imagine stopping dating when we are having such a good time. But I feel like I am taking on a disability that could leave me in a bad marriage and I want a good marriage.”

My immediate thought is that part of what she loves about this man is probably a direct result of who he has become because of his headache disorder. After all, we’re known for being brave and tenacious. Maybe his his chronic headache is as much an asset as a liability.

Just because one person has a physical disability doesn’t mean a marriage will be bad. It is undeniably something to deal with, but every person and every relationship has difficulties. It is fortunate that this one is known ahead of time.

This man appears to function quite well with his headaches and there’s no indication his condition is worsening. There’s also no guarantee they won’t worsen, nor is there a guarantee that the woman asking for advice won’t be diagnosed with a debilitating disease or disabled in a car accident.

Life is uncertain and you can only know so many variables going into a major decision. You can decide what you want out of a relationship and weigh all the factors you know and still be surprised, pleasantly or otherwise.

I write all this knowing that I was married before my migraine attacks became severely debilitating. It has caused an enormous strain on my relationship. My husband and I love each other very much and are committed to being together, but there’s no denying I’m not the energetic woman he married, nor am I the equal partner we both expected. Still, he tells me that he’d rather be with me sick than not be with me at all.

That may be the real question this advice seeker should ask herself: Would she rather be with this man even though he is sick than not with him at all?

Readers, you have loads of experience with this issue. What’s your advice?

By

Migraine Beliefs

I am a faker.

If I tried harder, I wouldn’t have migraine.

It is my fault that I have migraine.

I’m only sick for sympathy or attention.

If I were a stronger or somehow better person, I wouldn’t have migraine.

I have chronic migraine because I don’t want to work (and I have specific migraine attacks because I don’t want to clean the house/go out to dinner with that person/see that movie).

I am not as sick as I act like I am.

I am lazy.

I am weak.

I am a failure.

These are the migraine-related beliefs I uncovered in therapy yesterday. Talk about a landmine. Knowing I’ve been carrying around these harmful falsehoods most of my life makes me incredibly sad.

I am sad that I learned as a child — from adults who couldn’t see my illness and so didn’t believe I was sick, from kids who called me a faker, from a family who thought pushing through illness would always overcome it, from everyone who told me “headaches” were trivial — to ignore my body, to not trust myself and how I felt. I learned that illness is wrong and shameful and that by “giving in” to illness — or even admitting how sick I feel — means I am a failure.

I am sad that I have carried these notions so long. That even after eight years of writing about migraine and being called a migraine advocate, I still hold on to them. That I absolutely know these beliefs are untrue and yet I am still invested in them.

I am sad that I am not only sick with a physical illness, but with shame and self-hatred about that illness.

I am sad for all the migraineurs who hold tight to similar beliefs about themselves. And for the friends and families of migraineurs who believe such things about their loved ones.

I am sad to live in a society that sees any admission of difficulty as weakness. That treats illness as personal (or even moral) failure. That blames the patient for not improving.

I am sad for the little girl who internalized all these messages and for the adult woman who is still haunted by them.

By

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?

By

Survey: What Do Others Think of Your Migraines?

From people thinking they’re playing hooky or trying to get attention to being told to get over their “headaches,” every migraineur has stories of appalling comments or behavior from friends, family, teachers, bosses, coworkers, and even strangers. Here’s your chance to tell your story. Complete this short, anonymous survey to help researchers better understand perceptions of migraine. The data gathered will be used to benefit other migraineurs and the health care professionals who work with us, as well as to educate the public at large.

Learn more about the survey in this writeup by Dawn Marcus, MD, headache specialist and lead researcher for this study: Research Opportunity: What do others think about your migraine?

The survey’s open through the end of April (which is tomorrow!), so submit your response now.