Tuesday, June 26, 2012

What must my friends think?

Migraine Awareness Month #26: "From the Outside Looking In"

Today’s blogging challenge is to write about what you think your family, friends, and others think a day in life, a day with Migraine disease is like.

Asking a friend who doesn’t have migraines to understand migraines is near impossible. I mean, my mom says she rarely has headaches. I can’t fathom that. I rarely don’t have a headache. How can someone who rarely has headaches understand pain in their head like mine? That’s not to say that my mother or friends or anyone else doesn’t try. They all do. Some of them actually get it pretty well I think. I am luckily surrounded by some quite empathetic people. But unless you have experienced migraines, and not just migraines, but chronic, I-can-hardly-catch-my-breath-between-these-migraines, migraines, or lived with someone who has, it’s pretty dang hard to really understand them.

I have a few friends in particular who have the hugest capacity for empathy that I can imagine. They seem to honestly feel my pain. It’s amazing to me. I think they understand that a day in my life consists of lots of figuring out what I do and don’t feel up to at any given instant, and what medications I can take on that day and contingencies for if medications don’t work…. Somehow, they just seem to get all this. I live Christine Miserandino’s Spoon Theory, and they understand it without ever having heard it or read it. If you’ve never read the Spoon Theory, take a moment to read it. It’s eye-opening about how someone with a chronic illness lives. With these friends, I can talk about illness, and it’s OK. There is no awkwardness or judgment, they understand to the best of their ability, and all is well.

I have other friends who get it, but not quite to the same extent. I am equally as grateful for these friends though. We still get to hang out, they don’t tire of me or my inconsistency, and the friendships are great. We don’t necessarily discuss my illness much, but we don’t need to. It’s a refuge away from the illness in some respects. There are a few friends in this category that I think I could discuss the illness with if I chose to, but it’s been easier not to, to be truthful. Sometimes, it’s difficult to let people in to the inner pain and depression and all that comes with chronic migraines.

I have a few friends who have migraines themselves, and to be honest, it’s these friends who sometimes understand the least, I think. How do you understand when you have an occasional migraine what it’s like to have near unrelenting pain? To be always in one phase or another of a migraine? To be worn down constantly by the hangover of the last migraine and the fear of the next one? I know back when my migraines where episodic, I never could have imagined a time they would be like they are now. I mean, if you had described it to me I could have tried to understand, and I like to think I would have had great sympathy, but could I have really understood? Probably not. Back then my migraines lasted 4 hours or so and medication or sleep got rid of them every time. Oh—that would be heavenly now!

Don’t get me wrong, some of my friends with migraines, even the episodic kind, probably understand the most. They CAN imagine what it would be like, but there are some who just can’t. Their migraines either aren’t to the same degree as mine in intensity or they just don’t understand the way they totally control life when they are chronic. I know it’s easy to think “Mine aren’t that bad,” or “Mine last a day and I get over it. What’s the big deal?” I understand it would be easy to shrug my illness off if your frame of reference with migraines is what mine once was. What these friends, what most friends, don’t understand is the way I have to juggle medication days to ensure I don’t run out and that I don’t get into Medication Overuse Headache. The way I have to plan my schedule based on contingencies, always knowing plans can change because I might not feel well on a day I can’t take medication. I know they don’t understand the near daily nausea, the constant gastrointestinal issues (which is my nice way of saying diarrhea) and the need to be careful of what I eat and where because you never know when that will strike.

What I understand though, is it’s not totally their fault. Migraine IS an invisible illness. I don’t have a reason to wrap a bandage around my head when I have one, and even if I did, no one would see it because I am too sick to leave the house. No one hears the pain in my voice, and no one hears me cry, because I don’t make or accept phone calls. Not only is migraine invisible, I am invisible when I have one. I disappear from people’s lives. I might try to distract myself in the early stages so I might show up on Facebook, but when it gets bad, I’m gone. I’m in bed, interacting with no one until the storm raging in my head passes. How can someone understand how bad it is when they never see it and never experience it? My husband knows although he has never experienced it, because he lives with it. He sees it on an almost daily basis. Other than a regular caregiver though, I don’t know how someone CAN understand.

Thank you for reading this. Whatever group you fall into, whomever you know with migraine, always try to be empathetic and understanding. Always remember people with migraine crave quietness, stillness, no bright or flickering light, and no overpowering scents. Read The Spoon Theory. Migraines, especially chronic migraines, are a balancing act. We have a lot of choices to make to keep ourselves balanced and to try to live the best lives we can. Please let us make the choices we need to make with no guilt and no fear of your resentment. Encourage and love us. That is what we need from our support system.

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com.

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