Today, I have the honor and the privilege of bringing to you a guest- post from one of the bravest Migraine Warriors I know: Ms. Lee Ann Place. She is a mother, a daughter, a student, a friend, an advocate, and a survivor. Each migraineur has their own list of comments that triggers in them a passionate desire to punch whomever said them in the head. Hard. Repeatedly. I’ll post my own list at some point but, for now, I give you Lee Ann’s list. It gives you an idea of what is not helpful, how what you say and what you mean may not always match up as you think it does, and how incredibly difficult battling an invisible illness can be. Should you dare speak any of these words, I suggest you tread lightly. Quotation marks precede and follow Lee Ann’s words so as to distinguish her thoughts from my own.
“#1 “Migraines are all in your head.” So not true.
Last Friday, I got my 5th Mallory Weiss tear in less than 3 years. This violent and repeated vomiting, because of migraines, is actually causing tears in my esophagus and bleeding into my stomach. Mallory Weiss tears are common more with alcoholics and bulimics. I’ve never been either, and yet, thanks to migraines, here I am. Additional stomach damage has consisted of grade D esophagitis, bleeding ulcers and a hiatal hernia; all thanks to migraines.
“#2 Why didn’t you take something before it got this bad?” is a question I hear quite a bit. The answer isn’t always so simple.
The typical chronic pain sufferer isn’t expected to sit there in pain, especially when pain meds are right there. Not so with chronic migraine sufferers. We must pick our battle, because every time we take our meds is another time when we can’t take meds later for risk of a “medication over-use headache.”
Worse yet, you may decide, “Okay, this one sucks, I’m taking meds,” only to have waited too long, so that the acute meds don’t work. Or you do take them, and then you throw them right back up, because the nausea accompanying your migraine, has decided you need to pay homage to the porcelain gods.
#3 “On a scale of 1-10, how bad is your headache?” I have to say, this really bothers me. If they can’t even get it right in the medical community, (hello: Migraine, not headache), how can we expect anyone else to?
If I use the smiley face chart to go by, I’m a ten. So I don’t, because no one can be a 10 all the time. I have a better system. Here it is:
0 : No pain, I’m here to socialize and because I’m a drama queen and want to put it on Facebook that I had to go to the ER.
1 : I stubbed my toe.
2 : I got a bloody nose and it’s throbbing.
3 : I have a broken nose and it’s throbbing and hurts to be touched.
4 : I strained my back and it hurts to move, breathe and walk.
5 : I got bit by a dog, who won’t let go and keeps shaking their head, to tear out the hunk of flesh they still have in their jaws.
6 : Someone ran over my foot with their car. It’s throbbing, most likely broken, and in need of treatment ASAP.
7 : I fell down two flights of stairs, broke several bones, ribs and am probably bleeding internally.
8 : I got hit by a car and thrown 30 feet.
9 : I got hit by a car, thrown 30 ft, and am throwing up.
10 : Just kill me. Kill me now. If I wasn’t throwing up so hard, I’d be trying to figure out how to do it myself.
Side Note: You won’t ever see me at a hospital with less than an 8, because the Emergency Room hates people with migraines. Not me specifically, but as a whole group of suffering people. You can’t prove to them that you’re in pain, they can’t see where it hurts, so you get labeled as a frequent flyer, or more likely, as a drug seeker.
#4 “Have you tried…”
Yes. The answer is undoubtedly yes. Having endured migraines for more than thirty years, and chronic migraines for almost a decade; I have tried it all. It shouldn’t rub me the wrong way that people are trying to help me find a “cure” for my migraines, but hearing about how this treatment that I’ve tried with no success has helped someone else does two things:
a. It makes me incredibly jealous of that person, (like salt in an open wound).
b. It makes me feel like a failure because it didn’t help me.
#5 “You should see your neurologist as soon as possible, to get these migraines under control.”
I see my neurologist more often than I see my dentist, primary care giver, and optometrist combined, and though I like her very much, they are not social visits. Still, believe it or not, I have chronic migraines.
I can’t help but wonder sometimes if other doctors expect neurologists to be magicians: you know find the right medication for every person on the first try. Or because they don’t think I should have so many migraines, it must mean that I’m not doing everything I can possibly do to avoid them.
Last thing, I once read in a support group someone complaining about how their caretaker just had no understanding of what they were going through. Others chimed in about doctors not really grasping it either. While I didn’t address how to help them understand the pain factor of a migraine, this is what I came up with to help people who don’t have migraines understand:
Imagine being submerged in an isolation tank, with extremely bright, strobing, lights, and really loudly blaring sirens. Add the smells of Garlic, Goat Meat and Curry pumping through the air vents. The isolation tank should also rapidly alternate between freezing cold and extreme heat.
With all of that going on, they should then imagine being told things they need to remember and respond to. Ten minutes in that isolation tank, and the whole world would have a better understanding of what a migraine sufferer goes through.”
I would like to thank Lee Ann for being a part of my blog and my continued efforts to MAKE MIGRAINES VISIBLE. I extend an open invitation to any of my readers that would like to guest-post here: I’d love to share your point of view and/or experiences, so long as they fit in with the mission of my blog. Migraine Warriors, caretakers, medical professionals, advocates, even novices who may just have questions: drop me an e-mail at firstname.lastname@example.org with the subject line “Guest Post”. I look forward to working with you!