Everyone with chronic migraine knows it takes a massive toll on romantic relationships and families, but there’s little research on the topic. Here’s your chance to help remedy that. Karen Bacher, a migraineur and family studies PhD student at the University of New Mexico, is recruiting couples to complete an online survey to study the impact of migraine on the families of women with chronic migraine. By sharing her findings, she hopes to raise awareness among health care providers, counselors, and patients’ families.
Participants need to be married or cohabitating heterosexual couples between the ages of 21 and 55. The female must have chronic migraine, while their male partner must not have migraine. Partners will complete an online survey separately, which takes about 45 minutes per person. At the end of the survey, participants will have the option of entering a drawing for a $100 Visa gift card.
Couples interested in participating may contact Karen at firstname.lastname@example.org for full eligibility criteria, benefits of participation, and the survey link.
Although I haven’t seen the survey, I’ve been emailing with Karen and am really excited about this research project, which is for her dissertation. I believe Karen “gets” the severity and impact of migraine and genuinely wants to do her part to improve the lives of chronic migraineurs. In case you’re not sure, it may help to know she’s had migraine for 29 years and gets no relief from medication, while her sister is disabled due to migraine.
I’m unable to participate because Hart has episodic migraine, but I urge you to do so if you fit the criteria. Understanding the weight of chronic migraine on families and romantic relationships is one crucial element in de-stigmatizing this illness. It could also improve our care from doctors and therapists. And, of course, anything that helps families better comprehend the plight of migraine is a boon to all migraineurs.
“Your headaches are all in your head,” two uncles have told me recently. I think they were trying to be cute, playing on the notion that the pain is actually located in my head, so my illness must be in my head. I don’t think either one was trying to be insensitive. And yet, there’s not much someone could say to insult me more.
This illness has overtaken my life. It renders me unable to work and keeps me from spending time with friends and family. My house is a mess and I can barely keep up with feeding myself healthful food. To have a family member insinuate — even unintentionally — that I might making it up or am somehow mentally weak invalidates the immensity of my struggles.
The first uncle said it on Facebook and I ignored the comment. When another uncle, from the other side of the family, said it on the phone last night I said, “No, it’s in my neurology.” He said “Oh, is it?” and moved on to a different topic. I’ve been mulling over it all day, trying to decide what I could have said to this man in his 70s who knows little about migraine (after all, he refers to my illness as “headaches”). I could have pointed out that it is a neurological disorder, just like ALS and Alzheimer’s, both of which have had a significant impact on that side of the family. Migraine doesn’t have the same outcomes as those illnesses, though, and I didn’t want to scare him.
I’m still at a loss for the best way to deal with the comment. I should probably figure it out before any of my other uncles decide to tell me my migraines are all in my head. Any suggestions?
Migraine, chronic or not, has a profound impact on those who experience it, yet even well-meaning family, friends, coworkers and health care professionals often think of it as “just a headache.” An Open Letter to People Without Migraine was intended for my personal Facebook page — until I realized the message was too crucial to limit to a private sphere and decided it belonged on Migraine.com. It begins:
I have a migraine attack 28 days a month. I tell you this not for pity or shock value, but to beg for a smidgen of your comprehension. I want you to understand that migraine is not a bad headache, but a neurological disorder that affects every system of the body. You see, the unbearable head pain that migraine is known for is only one symptom of the illness.
For the rest of the post, which may be the most important piece I’ve ever written, please see An Open Letter to People Without Migraine and share accordingly.
Migraine Awareness Month Blogging Challenge #27: “In my Head and Heart” — Who inspires you to keep trying and not give up, despite your migraines?
Not giving up can be interpreted in multiple ways, from trying new treatments to continuing to engage with the world to not committing suicide. The stories I read online of people who find effective treatments after years of unsuccessful attempts keep me trying new treatments. You, dear reader, inspire me to continue writing and sharing my stories about living with chronic migraine. My wonderful husband Hart and my niece Michelle are the two people who keep me from giving up in the broader sense.
Hart encourages me in the day-to-day struggle of chronic migraine, making sure that I eat and laugh. He holds me when I wail that I want out and talks me through the frequent emotional and physical agony. He gives me strength every single day and I’m not sure I’d be here without him. He also makes excellent popcorn.
Although I have two nieces and two nephews who inspire me, my 15-year-old niece Michelle has a special place in my migraine world because she, too, has migraine and has had chronic daily headache since she was 11. Since she was very young, our similarities in appearance and personality have been obvious. I am honored to have those traits in common, but was devastated to learn we also share headache disorders. I cannot give up my fight to live well despite chronic migraine and chronic daily headache because I refuse to show Michelle that giving up is an option.
I don’t know what my niece’s path with migraine and headache will look like, but I will be here to guide her. I will not only tell her, but will also show her that the daily struggle is beautiful and worthwhile. I will also continue to advocate to advance the scientific knowledge and treatment of migraine and headache disorders. She is worth it. I am worth it, too.
Who inspires you?
National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger’s Challenge is initiated by Fighting Headache Disorders.