Migraine Awareness Month #26: From The Outside Looking In

Here at Migraine.com we’re participating in the National Migraine Awareness Month Blogging Challenge during the month of June. All of the patient advocates are taking turns to cover the prompts, and today is my turn.

Today’s prompt is: From the Outside Looking In.” Write about what you think your family, friends and others think a day in life, a day with Migraine disease, is like.

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By and large I think people who have experienced a migraine attack just get it in a way people who have not can’t. People try to understand and many of them are wonderfully empathetic. They can compare it to pain they’ve experienced and can see by watching us how awful it really can be. And I think that’s all we can ask: For them to try to understand the best they can.

By the same token, I think it’s difficult for people who experience migraines on an infrequent basis to really get what it’s like to experience them on a chronic basis (15 or more attacks a month), as so many of our patient advocates and readers here at Migraine.com do, myself included. It wears down on you, which compounds the impact of each individual migraine. You rarely get the chance to fully recover from an attack before you experience another one. You can’t always take the meds that help you most because of financial constraints, insurance coverage limits and the need to avoid Medication Overuse Headache. Before you know it and despite your best efforts to have a real life, every moment of your time becomes consumed by a phase of the migraine attack until it all sort of melds together in a symphony of agony and loss of control of yourself and your life.

No doubt anyone who even tries to get what it’s like to live with migraines on that frequent a basis has some idea how horrible it is. Clearly they see that we have many limitations and deal with a lot of pain and discomfort. But what about the things we don’t let them see, like the diarrhea, the vomiting and dry heaving for hours on end, the fainting. All that stuff is really humiliating, but if we aren’t open about it, they will never see or understand the full range of our disease. And just how embarrassing and demoralizing it can be. Only a few people in our lives know about that stuff, usually just our parents and spouses. Which is why I think it’s so funny when a woman is super careful about something like not farting in front of her husband. In some ways I wish I could go back to a time when my husband and I still had that facade of perfection. Unfortunately the man has cleaned up my vomit and poopy pants. Many, many times. I kind of like the idea of being able to keep up that facade with other people. Even if it limits their understand, keeping the really bad stuff private allows me that.

If any of you are on Pinterest or visit other blogs and sites you may have seen these photo collages depicting the differences in perception of a particular career, condition, relationship, etc., among various groups of people. I thought it would be fun to make one to accompany this post.

What do you think other people think a day with migraine is like? Do your friends and family get it? How much do you share and how much do you keep private? Please share in the comments.

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

To help raise awareness about Migraine, please Tweet this post with the hash tags #NMAM and #NMAMBC and share it on your Facebook page. Thank you!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

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  • chipdooley
    6 years ago

    1st I hate migraines, they never leave just gets a little better for a day or two then I’m back in bed throwing up, falling all the time even down my stairs. people call me a drug addict, because i have strong meds and where I live we have medical marijuana. I would rather smoke or eat the pot than take all the morphine and roxicodone, valuum and a couple of other meds I am on.Everyone I used to know think I’m a piece of shit. The only people i see are my parents and kids. I have no friends anymore. My kids are 7, 9 and 14 and my ex left us 3 days after our daughter was born and moved in with who i thought was a friend of mine. The only ones that get it are my kids and I disappoint them all the time because of these friggn migraines. My parents sometimes understand but when I can’t do anything for a few days they just don’t understand how I can just lay down all day. I have to lay down or I fall down. But they have no idea what happens. The scariest thing is waking up from falling an not know what happen. It happens few times a year and so far I have been lucky that no one was home but me. Getting auroras, nauseas and it feels like someone is pounding on the side of my head with a hammer. The only people that understands what goes on with us is us and no one else.

  • tucker
    7 years ago

    I don’t think my husband (or family) really gets it much at all, b/c I rarely throw up (and if I do OMG, you can bet there will be some loud and amazing groaning and moaning and all focus is on me going on) *note, I am nauseated all the time – esp the past 2 years – that I think I am immune to phenergan, zofran, ginger, and since they give me so limited amounts, reglan – I take all this stuff daily* but to actually throw up is the absolute worst!!!!

    I can usually function with a bad migraine (say 6-7/10) – but you will know it b/c I am not very nice b/c I would REALLY, REALLY, REALLY rather be home in bed. I have only called into work 2-3 times b/c I was throwing up. But I will go into the bathroom and cry for 10 minutes at a time. And I keep ice packs at work. And I usually work PT so that’s a plus though I do fill in and work for a temp agency at times.

    But my husband has seen me faint many times from a heart problem when my meds were too high. And back in college when we were dating I fainted at church with his parents and didn’t wake up until I was in the ER. OF course they asked if I was pregnant in front of his Catholic parents! oh my! Did I mention we were dating? I actually fainted many times over the years, and went to the ER many times but I was never preggo and the heart problem only discovered recently – thank goodness Catholic inlaws.

    Now as far as guilt trips, I think he is only coming around recently to the importance of MY HEALTH as far insurance is related (in all aspects of my health, since I have more than just plain old migraines, were it that simple!) For a while it looked like he might be laid off, so he started job hunting, well low and behold, he actually got offered a job, but now he’s not getting laid off. We have EXCELLENT insurance right now. The new insurance (after 90 days of course) is questionable and I can’t find out anything (even it’s formulary) online-grrrrrr!!!! So while I’m telling him, he’s got to go with his heart on if he want’s to switch jobs, I think he’s realizing that with me (a big old would never be insurable on our own and this is a tiny little company he’s looking at) and a son with asthma vs. a big company with great insurance. Poor guy. I hate to make him feel guilty about my health. So it’s a good thing I get up and make his lunch every morning every day even on my days off. I can always go back to sleep after everyone leaves, and he still loves me, headaches and all!

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