Reply to Buzzfeed’s Migraine Posts

Recently, I have noticed Buzzfeed has been posting about people who get migraines. There was one article in particular about things you should never say to someone who gets migraines chronically. I appreciate that this popular news source that so many people read online is posting about the thing that I suffer from, but I also think they may be providing misconceptions about migraines. While the sixteen things listed in Buzzfeed’s “16 Things You Probably Shouldn’t Say to Someone Who Gets Migraines” may hold true to some migraine sufferers, I don’t think generalizations should be made.

The symptoms listed are only true for people who get traditional migraine headaches. There are a number of other migraine and headache disorders that aren’t addressed here because they aren’t as common and they aren’t as easy to identify.

I personally have a headache disorder called New Daily Persistent Headache, or NDPH. In a nutshell, what that means is that I have a headache at all times and the severity varies depending on triggers. I measure my headaches on a scale of 1-5. At all times, my headache is on the scale, usually at a lower 1 or 2. Probaby two or three times a week, it can spike to a 3, 4, or 5, a 4 or 5 being considered a “flare,” which could be essentially translated into a migraine. This is a headache/migraine disorder, but my headache manifests itself in may ways that are different from what Buzzfeed lists. I wanted to write this post to give those close to me an idea of what you should probably never say to me as a migraine sufferer.

Alas, I’m going to go through Buzzfeed’s list of 16 things and talk about why they are or aren’t true for my migraine.

  1. “I totally get it, I get headaches, too.” This one is probably one of the most true on the whole list. There are very few people who really do get it. Most people get headaches every now and then and some people get migraines, but few (at least that I have met) struggle with a daily persistent headache. This headache never goes away, meaning I am constantly in pain. Constantly. Until you can say you have had a headache that lasted seven years, you can’t tell me you “get it” and you “get headaches, too.” That being, said, you can word it differently. I love to hear when people say “I’ve had migraines before and I can’t imagine what you are going through. I am here for you.”
  2. “Couldn’t you just work if you stayed home?” This one I actually don’t hear much. I get grunts and sass when I tell people I can’t be somewhere, but they are usually understanding in saying “alright feel better” even though I sometimes can’t really feel the compassion. Point being, though, NO! I can’t work from home. First of all, I feel terrible, second of all, I may have sensory sensitivity and third of all, my mental function gets seriously compromised. Just yesterday, I had a crippling flare, and I actually made up an alphabet.
  3. “Have you tried…” Many people ask me what I have tried for treatment. Unlike the Buzzfeed article, I am not bothered by this. I am always willing to take ideas for treatment. I have tried many things, as I have been experiencing migraines for the past nine years of my life. But I do welcome suggestions because you never know if something is out there that you didn’t know about, even having looked around for so long!
  4. “It’s probably stress-related” To this, I agree entirely with the article and say, “NO SHIT!” Yes, stress is a trigger. But there’s not much to do about that. I have to still live my life and along with that comes stress. It’s a matter of management and I am working on that.
  5. “Next time you get one, just let me know. I give amazing head rubs.” The article shows a gif of a person running through a door to get away and essentially says physical contact to the head is crippling. For me, this is not at all true. I love a good head rub when I have a headache. I don’t want a massage that puts pressure on my head, but a gentle brush of the hair or something similar can sometimes be just what I need to calm down and fall asleep (Thank you to my wonderful boyfriend, Luke who gives such great head rubs when I’m feeling badly).
  6. “I know someone whose migraines turned out to be a brain tumor.” Thank you for the input, but don’t say that to me! I don’t want to hear your medical advice! I have a test done every time I go to the neurologist to check for any signs of a tumor and I have also had MRIs and all kinds of other things. If it was a brain tumor, we would know by now. But either way, it’s probably not a good idea to say this as to not panic someone! That’s serious business!
  7. “You probably need to take better care of yourself.” That’s just not nice. I do everything I can to be healthy despite this crap that I have to deal with. I would welcome advice on additional health advice, but just hearing that I don’t care of myself will upset me. I do the best I can! I don’t usually want to hear that it’s my fault that I have to deal with this! It doesn’t make for a very good friend.
  8. “Just lie and say you have a migraine.” I don’t get this often, but when I do I am as appalled as Mindy Kahling is in the image in the article. I would never fake a migraine. This is something that keeps me from doing so many things and I wouldn’t want to use it as an excuse. I try to do things despite migraines, not because of them.
  9. “You should watch a movie or listen to some music to get your mind off the pain.” Buzzfeed accompanies this one with “the only thing that doesn’t hurt our eyes or ears is darkness and silence.” For me, that doesn’t usually apply. Usually, the light and sound sensitivity is a symptom of more classic migraines. They are often a friend of aura, which I do not typically get. I actually love watching movies when I have a migraine. It does help get my mind off of the pain and I enjoy feeling comforted when I’m in pain. I usually watch The Princess and the Frog at least once (sometimes more…) when I have a migraine. As my favorite animated movie, it comforts me. If I do have any light or sound sensitivity, I can manage it by making sure light contrasts aren’t too harsh and I just keep the volume down!
  10. “You’ll feel better if you get something in your stomach.” Buzzfeed talks about all the throwing up that occurs during a migraine. This is not a symptom for all people. I have thrown up during an attack, but I don’t every time and I don’t very often. I do have a loss of appetite, and don’t want to eat, but if someone says this, they’re probably right. I do usually feel better after eating; sometimes, that is fleeting and it gets bad again, but it helps temporarily, nonetheless. One thing that helps a lot is if I drink a caffeineated beverage, so if you ever want to help me, a Coke is the perfect solution!
  11. “You have a headache again?” This I hate. I have a lot of headaches. A. Lot. Of. Headaches. I do have to cancel things, but I don’t want to. I don’t want to miss things, but it does happen. I would love it if friends and family would understand this and be alright if I have to cancel. I do try to do whatever I can to not cancel, but sometimes it’s unavoidable. And I understand it’s hard for you! So know that the empathy will be mutual if you do your best to understand!
  12. “Why are you wearing sunglasses indoors?” I actually get this about “at night” rather than “indoors,” but same thing. To this, all I can say is that it turns down the volume of the world around me. It’s a way to cope with what’s going on.
  13. “It’s your hormones, isn’t it?” No. It’s not. I have been tested for menstrual migraines and I have also done a birth control trial to see if the hormone change affects my migraines. We found that it doesn’t. Again, this is a diagnosis thing…and I love to hear your suggestions, but don’t try to diagnose my disorder.
  14. “You don’t look sick.” If people see me while I have a migraine, I do look sick. And I don’t think that’s untrue for other migraine sufferers. On a daily basis, I don’t look sick, while still feeling pain, but I just don’t think this applies. I fortunately never hear this. Even if I did, someone who doesn’t believe me isn’t someone who belongs in my life.
  15. “You should change your diet to…” See number 3. I have dietary triggers, but I don’t know all of them, even with the amount of time I have suffered from migraines. I welcome suggestions. If there’s a solution out there that I don’t know about, why would I shut it down?!
  16. “You just need to think positive.” This is true! I do need to think positive. Some days, it is really hard (yesterday, for example). But as my mom said to me, “everyone needs tough love sometimes.” I might be mad at you at the time for saying this, but in the long run, I know you are right. I try to do this every day!

The things that I need from the people who care about me are as follows:

-Understanding

-Support

-Love!

-Caring (especially while I’m having a migraine)

-Motivation

-All the help you can offer

-Make me laugh and help me have fun!

I feel for everyone experiencing migraines. I also thank Buzzfeed for bringing migraines to the attention to the social media public, but I just wanted to say that not everyone’s migraines look the same and not everyone’s migraines are the like the ones described in the article. This doesn’t make anyone’s migraines or disability more or less painful or difficult. I think we stand together in this and if a loved one of yours gets migraines (in any way, shape, or form), try to take a few moments to understand how their migraines are unique and how you can help!

Here is the link to the original article by Buzzfeed

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