“You’re doing everything right,” a friend wrote to me two years ago when my migraines were at their very worst. That sentenced has sustained me through many difficult patches. It has been so helpful for me that I want to tell you that you, too, are doing everything right.
The next 10 days afford many opportunities to talk with (hopefully) well-intentioned friends, family or co-workers who will tell you about the person they know whose horrible migraines were cured with a sun lamp/energy cleansing/daily enema. Maybe you’ll be lucky enough to encounter someone who tells you that all you need to do is think positive thoughts and your health will improve. Before you explode, try to take some deep breaths and remind yourself that this person probably means well but doesn’t understand the magnitude of your illness.
Then, instead of jumping on the guilt and self-doubt train that awaits folks with chronic illness (“I’m letting people down” or “I need to seek new treatments more aggressively”), remember that you are doing everything right. That’s really the only truth that matters. Whether or not you live up to someone else’s judgments, real or perceived, is irrelevant. Maybe you cancel plans or show up at the party without the requested potluck dish. So what. As long as you get up every day and try to live your life around your illness, you are doing everything just right.
On one of the headache forums I read, a member I’ll call Jane posted that a family member told her that Jane causes her migraines from the guilt she has about conflict in her life and fear. Receiving daft unsolicited advice is one of the side effects of illness that most doctors don’t warn you about.
Those who give advice, whether it is legit or absurd, are probably truly trying to help. It is hard to see someone suffer so much and not be able to fix the problem. Unfortunately, the advice often comes off as judgment, implying (or saying straight out) that we bring on our pain ourselves. How many with migraine haven’t wondered if this is in fact the case? We don’t need someone else to doubt us; we do that plenty on our own.
I rarely stand up for myself in situations like Jane’s. It just doesn’t seem worth the energy. But if my current outrage is any indication, I’m harboring much resentment about such advice. I need to speak up.
How will I tell misguided advisers thanks, but no thanks? There’s the polite: “Hmm, that’s an interesting idea.” Or the oh-so-nice and passive-aggressive approach: “Thanks for your concern, but I have a complex neurological disease that can’t be cured with platitudes.” I’m partial to: “Buzz off” (perhaps replacing “buzz” with a stronger word).
My response will depend on the person giving the advice and if I think it is offered out of kindness. How fed up I am that particular day will surely be a factor too.