Oh, here we go again. The migraine circus is back in town, starring me! Honestly, it’s like the world’s worst recurring show, and I didn’t even buy tickets. Yesterday, I was scrolling through my posts, reflecting on why I’m cursed with this chronic head drama, and guess what? I realized I’m doing it again and not going in when I know that is where I am going to end up either way most likely. No, it didn’t make me decide to go in for help not that it matters, because the point is I think I’ve reached that delightful juncture where I’ve taken every medication I can possibly swallow at home and am trying it again in most likely a futile hope of it going away. So, what’s next when I finally give in, you ask? A trip to the hospital, which is about as thrilling as a root canal performed by a raccoon with jittery hands.
Let’s talk about bias and discrimination in healthcare, my favorite hobby-slash-nightmare. If you’ve read my previous posts and if you haven’t, you know there are more posts like this. Why? Because I deal with it *all the time*. It’s like a recurring character in the tragic sitcom of my life. If I do end up dragging myself to the ER, I know the drill. I’ll either get the good team, the magical unicorn doctors and nurses who actually listen and care, or, more likely, one of the other two delightful scenarios. First, there’s the mental health dismissal troupe you know, the ones who look at me with raised eyebrows like, “Oh, sweetie, you don’t know your own body. Let us explain the difference between a headache and migraines because clearly, you’re confused.”
Yes, Einstein, migraines aren’t just headaches. They’re like headaches on steroids, mixed with a horror film soundtrack and a circus parade stomping around in my skull. So why do you keep trying to tell me it is a headache despite my medical chart. So frustrating and not something I put up with either so, hello two pet peeves wrapped in C4, and truly little time left before the temper goes into you just poked the bear mode. One with a razor-sharp tongue and decades of medical experience, I am still nice, but they still feel the knee high to a grasshopper sensation.
The second possibility? The drug-seeker label because, oh joy, I happen to be First Nations. Don’t even get me started on the judgment that rains down on me like confetti at a toxic party. Apparently, not hiding who I am is enough to make some people think I’m just here for the meds. Spoiler alert: I’m not. But hey, I refuse to lie about who I am because, first of all, lying is exhausting, and second, my identity and heritage is not a shameful secret. Not hiding it means I get judged even more, but I’ve got a backbone most days. Today, though? Nope. It’s like my spine packed its bags and went on vacation, leaving me here with spinning thoughts, motion sickness, and a migraine that could probably power a small city.
Here’s the kicker: even when I’m feeling this wretched, I still won’t lie or mislead about who I am. Not because I’m a saint far from it but because honesty matters. What if there’s more going on with my health and these little pieces of information help someone figure it out before things spiral out of control? But right now? My head feels like it’s trying to orbit Mars, and the motion sickness is throwing me into a carnival ride nightmare. Sitting down, lying down doesn’t matter. It’s all terrible. Add medication to the mix, and I’m floating somewhere between “I want to scream” and “I need to nap for eternity.” Fun times, huh?
Speaking of sleep, wouldn’t it be lovely if I could just escape into dreamland? Ha! My body has other plans. Pain keeps me up, like an annoying friend who won’t stop texting you at 3 a.m. And don’t get me started on the mental gymnastics of trying to decide whether to go in for help. It shouldn’t be this hard, but let me tell you, it is. Every migraine feels like a one-way ticket to chaos because of the hell I face when I go in most times, the worst is when they combine my heritage with my mental health. They fast learn that this is not such a clever idea. When I have a migraine, I know what steps go where, it is something my neurologist and I produced, you know the brain specialist and has been for a good decade now, that one. So, sorry jackasses, it is something I have rehearsed so many times and gone though so freaking often that I have thought of or experienced most situations and how to manage them. So guess what Doc, your going to listen to the expert here and that is final. Not that hard to do.
So here I am, stuck in the spin cycle of my own brain, trying to make sense of this mess and feeling like I’m trapped in a comedy of errors. And yes, I know, migraines aren’t funny. But when you’ve been living with them long enough, humor becomes your survival tool, even if it’s more than a little chaotic. If anyone needs me, I’ll be here, trying to outlast the pain and dreaming of a world where migraine relief is just a magical button you press. Until then, wish me luck or at least send snacks.
Though if I go in, perhaps with the medical staff luck that they aren’t idiots when I finally give in, and that includes the triage nurse. This might be the better idea. I do catch those looks they cast at me for daring to come in with a ‘headache’ despite it being the plan with the neurologist to treat these things. He knows how hard it is for me to go in and with ASD continuity is pretty important especially when sensory overload is trying to take control of my body while I sit in the back of my mind watching myself shut down. He gets me though that was after he ran afoul of my tongue the first time and learned I am pretty with it and aware of more then people think. At least though I have a place to share things good and bad and just plain random right here. It allows me to focus elsewhere and make it function to a degree, not the best but when you deal with them as frequently as I have all your life you learn to function or you don’t eat as an adult, or your kids still need to go to school…. The list goes on. I adapted best I can even if I do still feel like someone is trying to rip out my brain from inside.
So I find myself saying thank you for listening to my medical chaos and making it so I don’t feel quite so alone. It reminds me that others deal with these nightmares both the migraine and the medical bias and discrimination regarding me being First Nations in the medical world. It reminds me I have the skill to face these guys when I do finally stop being so stubborn. Do you have anything you tend to be stubborn and stuck in the mud as I do with the don’t wanna go in to the hospital so not gonna even if it hurts more and more? What do you find helps with getting you to not be as stubborn cause I have yet to figure that trick out.
7 responses to “Understanding Bias and Discrimination in Chronic Migraines”
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Ugh – I feel for you! I have been denied support and called a drug seeker, but I have also had positive experiences where they pop me on a drip and turn things around… the hardest part is the wait in the bright hospital! I don’t have a quick fix either sorry, but if the migraines not tooooo bad then ginger beer, coffee, sports drinks taken with the meds can help… once it takes hold though, I usually just have to ride it out. Sending healing vibes your way, Linda xx
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Thanks Linda,
I hate it when I can hear them make a racial comment and refuse to look at connectcare, to bad I have access and can show them the orders from my neurologist. My next appointment I am soooo going to be getting a written letter on his letter head from him that I can put in my green binder for medical stuff. I use my phomemo printer to print a label I stick at the top of each of my papers in that binder with my name, my healthcare ID and the words “please return original to patient” after having the papers not returned after. They can’t photocopy it and not have that show up. I have even taken to using a clear label and making the black color faded to create a water mark saying the same thing. Annoys the hell out of them, my response ‘quit swiping documents I need in an emergency then’. For me, I can’t ride them out, they will not end if I don’t get intervention sadly once they take hold. A decent 80% of my visits end up with me going into full blown you really don’t want to play this game right now advocate mode, it’s triggered by being called a drug seeker to that level when I hear a racial comment when they think I can’t hear. Sucks to be them. The remaining 20% about 15% are judgmental about it because of bias with my mental differences or frequency. They get a lower level of f off advocate mode. I love when I get that 5% though. As for the bright as hell lights, I wear sunglasses, which for some reason get’s me bumped up on the triage list. One day they will figure out how to cure the brain of these pain nightmares. Till then well as you said. gotta ride it out. Thanks
❄️Siearra xx-
Sunglasses! What a good idea. I tend not to overdo it with glasses, as the frames often feel tight and can give me the equivalent of a hat-headache… but wearing them to hospital makes perfect sense! Here’s to that “one day” when we all get to wave the nightmare goodbye. I believe in it (they’ve come so far in 40 years – imagine where they might be in another 4!) Linda xx
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here is hoping it wont take another 40 years though lol. If you get plastic frames take a hair dryer and carefully heat and bend. I either do the arms or nose for this. Metal is a bit easier. However if you bring it to a glasses place most are happy to help shape if you explain why. It doesn’t take them long at all. Some are dicks and refuse to. I suggest if you do it yourself to practice on a cheap pair first. My sister is the one who gave me the idea because she is beyond photosensitive when it comes to her migraines.
❄️Siearra xx
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