People often ask me where I get the ideas for the pieces I write about migraine. Many of the pieces I write come from my email, comments and questions I see on Facebook and Twitter, and from the comments readers post on my pieces here on HealthCentral. Last month, I wrote Adopting a Migraine Fight Song for Inspiration. In one of the comments, one of our readers had a request. She wrote:
“Yes, well, that song is now good and stuck in my head. LOL I have a favor to ask of you, Teri. There are days when my migraines almost get the best of me. You know what that’s like because you’ve been there too. I had one of those days last week and thought to myself - I could really use a pep talk from Teri Robert about now. You’ve given us so many articles of encouragement that I was wondering if you’d ever thought about writing a pep talk that we can come back to when we feel like giving up? Thanks for everything you do for all of us, Barb.”
Because I know how easy it can be to get discouraged and want to just stay in bed with the covers pulled over our heads, one of the things I try to do here is keep all of us encouraged, ready to try something new, and holding on to hope. So, Barb and everyone who’s reading this, here’s my take on living with migraine disease.
It’s About Choices:
To great extent, how well we live with this disease is up to us. We must choose to live a “glass-half-full” life and always, always hold on to hope. That may sound simplistic, but stop and think about it. If we do those two things, we maintain the attitude that keeps us going, helps us work with our doctors as effective treatment partners, and stay positive enough to enjoy life - despite the extensive challenges living with migraine can present.
Did you know that our minds are so strong that, if we try a new treatment thinking that it won’t work for us, it very likely won’t? It’s true! That same treatment might have worked for us if we hadn’t been so sure it wouldn’t. In psychology, this is called “self-fulfilling prophecy.” That’s one reason we have to maintain our hope. You can read more about this in Hope Is An Essential Element of Migraine Management.
The Magic Migraine Pill:
Research has shown that patients with an internal locus of control are healthier and have better treatment outcomes. Having an internal locus of control means that we look at ways that we can impact our migraines and migraine treatment. The opposite is an external locus of control. Patients with an external locus of control go to the doctor expecting them to prescribe the “magic pill” and fix everything. See the difference? Which patient are you? This is a choice we can make - to have and use an internal locus of control.
It’s recommended that migraineurs who have three or more migraines a month, or whose migraines are especially severe, utilize preventive treatments. It’s easy to feel as if we’ve, “tried everything.” There’s good news on this front. With all the available preventive treatment options, it would take over 25 years of trying a new preventive every three months to give “everything” a fair trial. So, don’t give up on preventives, even if your doctor says he or she is out of ideas or that there’s nothing left to try. No doctor is the right one for every patient, so consider consulting a new doctor if that happens. The best option is often a true migraine specialist.
Support and having someone to talk with is crucial. Of course, we all like to have another migraineur to talk with, but don’t sell other people short. They may not know exactly what it’s like to have a migraine, but people who truly care about us are quite capable of seeing and understanding what migraines do to us. What’s more, if we adopt the, “If-you’ve-never-had-a-migraine-you-can’t-understand,” attitude, guess what? We ourselves help perpetuate the stigma associated with migraines. So, let’s build inclusive support systems that include everyone in our lives who care and are willing to be there for us.
If you find yourself needing information or support when nobody is close by, check out our Migraine Management Group on Facebook. To keep the group free of spam, people posting links just for the heck of it, and other drama, we send everyone who asks the join the group an email that explains the group and our few simple rules before adding them to the group. Only those who reply are added to the group. That’s our way of keeping it a “safe harbor” for all of us.
It’s NOT All On Us:
First of all, if you’re harboring guilt about not being able to do things for and with your family and friends, dump it. It’s not your fault, and you have no reason to feel guilty. It’s YOU your family and friends should be concerned about, not what you can do with and for them.
Speaking of friends, migraine has taught me some tough lessons about friendship. When my migraines first became chronic, I was suddenly unable to go out and meet friends. I was constantly canceling. You know how that can be. My friends stopped calling. Eventually, they stopped even returning my calls. There was a big lesson to be learned here. Those people weren’t really my friends. True friends don’t desert us because we’re ill. It was a tough lesson, but one well-learned. While we may have many acquaintances in life, we have only a handful of true friends.
When All Is Said and Done:
At the end of the day, I know how hard it is to live with migraines. It’s definitely not for “sissies.” But I know something else too - I have migraine, but migraine doesn’t have me. I am not my disease. It will not beat me because I won’t let it. There may well come a time when the treatments that are working for me stop working. It’s happened before; it may well happen again. And when it does, I’ll go to my doctor, and say, “Well, crap. It’s happened again. Let’s figure out what to try next.” We’ll go from there, and we WILL win.
Fifteen years ago, I was a migraine patient who was in bed five or six days a week, all day, with migraines that nothing touched. I don’t even know how many doctors I’d seen, both in my hometown and in larger cities two or three hours away. I’d lost my job and wasn’t able to financially contribute for the first time since the age of 16. Things were pretty bleak. Then I got ticked off and hit the Internet looking for information and help. The rest, as they say, is history. If you’re not familiar with my history, and you’re interested, it’s all explained in this chapter from “Living Well with Migraine Disease and Headaches.”
If You Don’t Remember Anything Else, Remember:
If I can hold on to hope and keep fighting migraine disease, so can you. I’m a migraine patient too, and we have a great deal in common. I believe in you. Now, you must believe in yourself.
_which is also a wish for each of you - ACHIEVE: _
AHMA is H.O.P.E. a Headache and Migraine Organization for Patient Empowerment
Teri Robert is a leading patient educator and advocate and the author of Living Well with Migraine Disease and Headaches. A co-founder of the Alliance for Headache Disorders Advocacy and the American Headache and Migraine Association, she received the National Headache Foundation’s Patient Partners Award and a Distinguished Service Award from the American Headache Society. Teri can be found on her website, and blog, Facebook, Twitter, StumbleUpon, Pinterest, LinkedIn, and Google+.