by William B. Young, MD:
When my daughter was about to go to college, I happened to see a patient who had just gotten her master’s in college counseling. I asked for one piece of advice for my daughter. She answered that based on the literature, the kids who have only classes and dorm activities were much less likely to be well adjusted and successful than the kids who participated in at least one other activity. It didn’t matter what that third activity was, just as long as it involved something that was meaningful to them. Whatever it was, it was tremendously protective against stress and social isolation. For my daughter it was synchronized skating, and when she dropped out in her sophomore year because of scheduling conflicts, she became much more stressed and unhappy.
It recently occurred to me that this is a good model for everyone, really, but especially for chronic migraine patients. Migraine disease is so consuming, and has such an impact on family and work relations, that finding this third-space sanctuary becomes an ever more critical inoculation against becoming overwhelmed. One of my patients who has severe chronic migraine that at times leaves her unable to work, would sing in synagogue. I thought that this was not the wisest thing for someone with a migraine, and she admitted it could temporarily worsen her migraine. She pointed out that it was only for 1 hour a week and this is what she loved to do, and she could pull it together in trade for the joy and sense of normalcy it gave her. By the way, she is now headache-free, got another degree, and is teaching and working.
I think that finding a good third space can be very hard for a person with bad migraine, but that finding something is truly important. I think it works best when it requires interacting with people outside of work or home and consumes someone in such a way that it becomes very hard to focus on pain. I don’t think it needs that much time, and if an hour a week is all you can find, that is fine, if you have found a true sanctuary. Find something, try it on and if it doesn’t fit, keep trying until you find something meaningful. Fight for one tiny, special activity that takes you away from the places in your life that the pain resides. Keeping a seed of contented normalcy somewhere in one’s world is critical, and provides hope in the darkest times.
I say these things, and I believe them. But I really don’t have any scientific evidence to prove them. Persons with diabetes are supported, based on scientific evidence, with services like dietary consults, and encouraged to exercise. Surely persons with severe migraine disease deserve scientific study of social strategies that help, and then support to get them. The Alliance for Headache Disorders Advocacy is dedicating to doing these things.
by Sarah Gomez, PsyD:
Migraine patients often come into my office and talk about how their lives have significantly changed due to their frequent pain. They discuss feeling that their world has been taken from them, how they used to do so much more, generally feeling a myriad of emotions in regard to their disease. They mention anger and frustration at their decreased capacity to function, sadness and loss about missing social and family gatherings, feeling misunderstood and often guilty about their inability to participate in activities, and frequent dissatisfaction about the state of their lives. They worry about when the next migraine will come, how much pain may be expected, and what associated symptoms may arise. By and large, migraine sufferers are often consumed by feeling completely out of control of their own lives, experiencing the migraine as the entity in power.
Time and again, the migraine experience has the capacity to greatly diminish joy and happiness is in one’s life. Additionally, depression and anxiety are common to migraine sufferers, making it doubly challenging to hang on to anything wonderful, bright, and good in life. The pain and isolation that migraines produce commonly rob migraine sufferers of the things they enjoy most. This is tremendously taxing; managing both the symptoms that migraines bring with them, as well as what they take away is exhausting. In psychotherapy we spend a lot of time processing this complex experience, as well as exploring ways to counteract the clutches of the disease.
My suggestion, as a psychologist and echoing the sentiments of the college counselor, is to keep up with something that brings you joy. In appropriate moderation, do something that you love. Try to keep the migraines out of one small aspect of your life. See if you can identify and nurture a third space that is yours alone. Granted, the pain may come, or be exacerbated by your activity, as the patient above described, but the price may be worth paying. To own something, to take something back in your life, to exert a sense of control over the obstinate migraine may provide a payoff that’s twofold. You are in charge of yourself for that moment in time, and secondly, joy enters back in your life! It sounds almost too simple, I know. However, recent research suggests, and my experience supports, this is often a major step for many patients toward feeling some sense of normalcy again. Increasing the sense that you can do something may make a world of difference. Over time, patients who become dedicated to this concept seem to develop and maintain migraine health better than others. Of course, finding a third space isn’t a quick fix or a surefire way to reduce the pain, but it’s a little taste of the life you’re striving for.
Little research has been done on social and psychological factors that have the ability to aid and hinder the migraine experience. It is imperative for patients to feel that they have some tangible way to be involved and manage their health aside from simply taking a prescribed medication. The Alliance for Headache Disorders Advocacy supports this approach and is dedicated to working toward further understanding of these methods.
William B. Young, MD and Sarah Gomez, PsyD
Jefferson Headache Center; Philadelphia, Pennsylvania