I was recently complaining to my husband, for something like the ten thousandth time, about how easy it is for my pain to feel completely imaginary. I minimize my pain a lot, probably more often than other people, but other people can accidentally minimize it, too. It’s both a blessing and a curse that my chronic pain involves having a headache- a blessing because it’s easy for people to understand the basic idea, meaning I don’t have to be creative, but also a curse because it can be, at the same time, impossible for me to feel understood.
Let me elaborate. You’ve had a headache before, haven’t you? Most people have, so something specific comes to mind when I say that I have a headache, or that I have lots of headaches, or that I have headache attacks. It’s different than if someone were to tell you that they have strokes, or ALS, or even cancer, because you most likely don’t know anything about how these feel. But when I mention my struggle with chronic pain, it recalls a past experience for many people, and they say something like “Oh, I get headaches, too!” or “I have migraines, they suck!” And just like that, it seems on the surface that our experiences are comparable, even though my research indicates that my headache condition is exceptionally rare and found in something like 1% of 1% of all headache sufferers.
This means that many people who earnestly try to understand my chronic pain by empathizing often misunderstand my real experience, because they boil it down in order to fit it into their experience. It’s tempting to do this with something as common as headaches, so I get it. But when my pain is simplified or forced into an experience that is barely comparable but called by the same name, it suddenly feels insignificant to me. I start to wonder whether my pain really is that bad. I start to think, perhaps everyone who has headaches gets headaches that are as bad as mine. Perhaps everyone who has headaches has them all day, all of the time. It’s a weird spiral of thought.
Anyway, as I was bemoaning this particular crazy thought pattern and how it’s triggered in my day-to-day experiences, my husband came up with a great idea: re-branding! If I don’t use the word “headache,” then voila! We’ve avoided the word that minimizes my pain. And I have a clean slate upon which to draw a picture of my unique experience for my caring friends.
So, ladies and gentlemen, without further ado…Natalie’s unique headache brands! It’s a trifecta: Draco, Snape, and Voldemort. (For those unfamiliar…these are the names of characters in Harry Potter.)
Draco is my always-there headache, meaning 24/7; he’s a constant “companion” who does not go away, even with many medications intended for this very purpose. When he decides to enter the spotlight and flare up, he causes all sorts of trouble, like light sensitivity, or a throbbing/pounding pain in my head. Draco and I know each other well, we met almost two months ago. A neurologist would call Draco my daily persistent headache.
Then there is Snape, a.k.a. primary stabbing headache attacks. Snape lurks in the shadows, always nearby and ready to do something mean. Snape feels like getting stabbed repeatedly in the head with an ice pick. So, when Snape does show up, he is always scarier than Draco. Snape also has a tendency to stay around after arriving while not responding to medications, which explains why Snape is who usually sends me to the emergency room.
And finally, we have Voldemort. Voldemort is, of course, ugly, just like the severe migraines which he represents. When I see Voldemort (which is rarely), he always takes center stage, and is never in a supporting role. But overall, Voldemort is seen far less often than both Snape and Draco. He appears only in extreme circumstances, like if Draco and Snape have both been around for days and days. Unlike Snape and Draco, however, Voldemort is not usually as long-lasting. Voldemort can flare for a few hours, or maybe a day, and can often be controlled by medication. (This is where the Harry Potter metaphor breaks down, I know…)
Most everyone has had a headache. But who has experienced Draco, Snape, and Voldemort headaches?? I say this not to convince you that I’m special (you REALLY don’t want to be special in this way…trust me), nor do I want you to start asking me how Draco or Snape is today. That’s downright weird. But this helps ME to understand that “headache” is an altogether insufficient word to use for my pain, even though I have to use it time and again because it’s the only generally agreed upon term. At least now, when I say headache to someone, I’m really saying Draco, Snape, or Voldemort to myself. This helps me to validate my own experience. And, if there is time, I try to elaborate to others and share more about what I mean by “headache.”
I experience more than simple headaches. If you’re someone who is going through a hard time, you may experience more than depression, anxiety, grief…whatever your struggle is. Perhaps you can also think of a word that you use that minimizes your pain and makes it feel imaginary. If whatever you are going through feels like too much to fit into the word you’ve been using…you should re-brand! Maybe no one will use your words to describe your pain (and maybe no one should, especially if you come up with weird words like I did). But at the very least, you can describe your pain to yourself and validate your experiences.
And for the Harry Potter fans that made it to the end of this post, here is a link to the video I know you are thinking about!
Well done, that WAS the video I was thinking about. Though it does not feature Draco.
Yes to all of it! There’s the constant daily headache, the really bad 3 day long migraines, the cluster headaches that make me want to jump off a bridge…I feel you.