What I Tell Family About Migraine
Migraines seem like a private struggle on the surface. Aborting an attack often requires isolation from lights, sounds, and smells. I suspect this was one reason I kept the details to myself in my younger years. The more I’ve learned about migraine disease, the more I’ve come to understand the importance of educating family and friends about the illness. An episode affects more than just me.
I try to educate family and friends about what a migraine is, how it affects my life and theirs, and how they can help. It’s hard for people to understand the levels of pain involved in a migraine episode if they’ve never felt one. Even those closest to me, who have witnessed the worst of the worst, tend to empathize quietly from the next room because they don’t know what else to do.
What do I tell family and friends?
I teach the basics: First and foremost, I tell them the real definition of migraine. It’s a recurrent episodic neurological disorder for which there is no known cure. Headache is a symptom, not a description. Other symptoms include mood changes, brain fog, nausea, vomiting, and extreme sensitivity to normal lights, sounds, and smells. Migraine is not a one-time thing, and there is a lot to know about this complex illness.
We are not all created alike: Each migraine warrior has his or her own unique set of triggers, much like allergy sufferers. (Everyone seems to understand how allergies differ slightly from person to person.) There is no test to determine triggers other than trial and error and knowing what the most common triggers are. I want them to understand this is a legitimate disease that has multiple variants. There are chronic, hemiplegic, vestibular, and menstrual migraines, to name only a few. Migraines can be with or without aura, and some have no head pain at all.
How I help myself: Prevention is best, but not 100% effective. I have learned my triggers and try to avoid exposure to them as much as possible, but some things are unavoidable. A migraine is a brain disorder, not a tension headache. There are medicines that target the biological event taking place in a migraine episode. Ibuprofen and acetaminophen are not those medicines. I have doctor-prescribed triptan drugs that work great for my type of migraine, and I know how to effectively use them.
How they can help me: I tell others to see migraine as a disease, not a sufferer’s choice. Believe me when I say I cannot think myself into or out of a migraine episode. If you want to help me, remember some of what I teach you. Remember what my major triggers are and help me avoid exposure to them. When an episode hits, turn down the noise and lights for me. Understand that my intention is not to mess up our plans or inconvenience anyone. Help me make the most of the good days.
What do I not tell family and friends?
About my fear: I don’t tell you how often I fear the possibility of my medicine no longer working or a migraine-induced stroke happening because I’m getting older. I don’t tell you how often I worry that I’m missing too much of life.
About emotional pain: When you blame me for an episode happening at the worst possible time, I’m deeply sorry even though it isn’t my fault. When you suggest I’m not doing enough to prevent an episode or my illness is getting in the way, I feel horribly guilty, sad, and alone.
About giving up: I don’t tell you how often I want to give up on trying to have a normal life. Some days, it seems easier to isolate myself completely and let migraine have its way. I don’t tell you when I think about giving up, because I don’t want you to give up on me.
Originally published at WebMD.com on 10/7/24.
