#1) Migraine is much more than a headache. In fact, for many of us, it is migraine’s other symptoms (the dizziness, blurred vision, trouble talking, mood swings, difficulty concentrating, and noise and light sensitivity) that are the most disabling.
#2) We’re tired, so, so tired. The kind of tired that only other chronically ill people and/or parents of newborns can fully understand. The kind of tired where, on our hardest days, getting out of bed and taking a shower takes almost all the energy we have. (To really understand what we’re experiencing, read up on the four phases of a migraine and the migraine hangover.)
#3) It isn’t as simple as taking a pill. Sometimes, medications work. Sometimes, they don’t. Sometimes they work for a while, and then stop working. Almost always, they have significant side effects that may or may not keep us from taking them. Finding a treatment plan that works and keeps working can be a time consuming, arduous process, and it’s nearly impossible to find one that works all the time.
#4) Our pet peeves include the questions “How are you feeling?” and “Do you have a migraine?” The truth is, for us chronic migraineurs, the answers to both are almost always “horrible” and “of course.” We hate being reminded of this, especially when we are sick more days than not. Instead, considering asking, “What can I do to help?” or “Is there anything you need right now?” You and your spouse might also try to work out a system for some kind of signal. My hands always get very cold when I’m having a migraine, so I wear a particular pair of fingerless gloves around the house when I’m in the midst of an attack. This helps my husband and kids know/remember that I may need some extra help, and keeps me from having to answer those two dreaded questions.
#5) That grimace isn’t about you. Promise. Are we glaring at you or in your direction? We might be. Do we look miserable or like we’re just not having any fun? Well, we aren’t. But, it isn’t about you. We’re just plain miserable. Try keeping a smile on your face while an invisible forces drives an ice pick into your temple repeatedly, the world spins, and you feel as nauseated as a cancer patient. Can’t do it? Well, your spouse can’t either. But, it isn’t about you. Please, please try not to take it personally (and take special note of #10 below).
#6) We miss our old lives. There are a lot of changes that chronic migraine forces upon us. Some are good. Others are not. Many, like giving up a favorite outdoor activity or food because it is now a trigger, can leave us grieving for the person we used to be, the life we used to lead. This is normal and it often fades in time, but it isn’t easy.
#7) We feel guilty. Terribly, terribly guilty. For canceling plans. For needing time to recover. For telling you “no” (to dates, sex, vacations, etc.). And, of course, for being sick. Those of us with chronic migraine know this is pointless. We know we cannot change the fact that we are sick, but it doesn’t matter. We still, all of us, fall – at least occasionally – into the guilt pit. And, this is a terrible, terrible place to be. It makes us feel weak, scared, and like we’re not good enough.
#8) We worry. We worry about money (especially if we’ve had to reduce our income due to disability), about the impact our illness has on our families, about increased stroke risks, and side effects. Add to that the fact that migraine is often comorbid with anxiety and depression, and we probably worry more than is healthy.
#9) You cannot fix #7 or #8. You can, however, make it better (or, at least, commit to not making it worse). When we have to prioritize our health needs over everything else, please say: “I love you.” “I’m here for you.” “I understand.” Bonus points if you can honestly thank us for taking care of ourselves.
#10) We still love you. Really. Truly. No matter how long it has been since we’ve been able to stay up all night talking or making love. No matter if we can’t eat an entire meal without lapsing into pained silence. We still love you. And, if you’ve managed to live side by side with us through our worst attacks without making us feel guilty for the million ways in which you’re being neglected (of which, I promise, we are well aware, see #7 above), you’re probably loved even more than you were before the attacks began. Even if it doesn’t always seem like it. Even if it doesn’t always feel like it. You are loved. I promise.