As Migraineurs, we don't want to be pitied, but we aren't always good at telling people how they can help us. How would you like to be helped?
I am using a substitute prompt today from the movie Evita. I am going to take it in a bit different direction and just talk a little about my situation and the situation of those around me. You see, I absolutely don't want to be pitied. I rarely even want to be asked if my head hurts. It's not something I like to talk about personally as it relates to my daily pain. Now, I don't mind telling people I have migraines and they are severe enough that I can't work and that sort of thing. I haven't yet found a way out of that conversation when someone asks me what I do for a living or a question like that. But that's pretty much talking about migraines in the abstract. Sure, we are talking about them as they relate to me, but we aren't talking about a specific migraine on a specific day or the specific pain caused by any one migraine. As it relates to my daily pain though, I just don't want to talk about it. I don't want to be pitied or babied or treated differently.
This creates a huge conundrum because I want people around me to realize I am in pain and act accordingly. To act quieter, talk softer, and to dim the lights if possible. I just don't want to have to explain how bad I hurt in order to make these things happen. It's a horrible catch 22. I just expect people to look at me and know they should adjust their actions. Do you know how unfair this is to most people? Especially considering what I wrote in Pretty Woman: What you do to look good when you feel like crap and Phantom of the Opera: What I hide behind the mask. I try to hide how bad I feel and then STILL expect people to know I feel bad so they can act accordingly. I'm impossible and I realize it. I've been this way for so long I don't know how to change it though. Only a certain few can look at me and really tell how I feel, and they can only do this sometimes. I can fool them at times. I am not trying to fool them, it's just that they can be fooled by how I look or dress that day. Nothing is certain.
On top of this, I have been in the hospital so many times where they ask you "What's your number"--speaking about their pain scale, two dozen times in a day. It will drive you insane. I can't stand to use "the numbers" to let someone know how I feel, and I have trained my family to basically not even ask me how I feel, to let me tell them if it's bad enough they need to know. I HATE having to stop and evaluate my feelings at any given instant to give them an update. See, one of my coping mechanisms is to ignore the pain when it's at a lower level. To push it down far enough, and keep myself busy enough, that I just don't have to think about it until someone or something brings it to my consciousness. Such as, asking me how I feel or how my pain is that day. So, I realize that puts my family at a disadvantage, because they don't know how to act or live around me. They always assume they need to live quietly around me. Truthfully, it's a safe assumption as loud noises hurt me when I have a migraine and trigger a migraine when I don't. But still, I know they would like to ask and have more information, but out of respect for me have been trained to just keep quiet until it becomes obvious or I tell them I feel bad. I know that can't be easy for them.
Back to the prompt: What can people do to help me? I'm not sure there's anything people don't already do that would help me. I've said before here and I know you'll hear me say again, I'm a lucky and blessed girl in many ways. My friends are willing to come sit with me when my husband is out of town and I feel like I need someone close by, or they are willing to just get me out of the house and take me to lunch or shopping or whatever it is I feel like that day. My parents step in and help financially and with a support net for when my husband is out of town, willing to be here around the clock if need be, my brother would do the same. I have extended family who has offered assistance too if I need it, and doctors who go above and beyond the call of duty....I have just about everything a sick girl could ask for, except health.
June, Migraine and Headache Awareness Month, is dedicated to Unmasking the Mystery of Chronic Headache Disorders. The Migraine and Headache Awareness Month Blog Challenge is issued by FightingHeadacheDisorders.com