Does anyone else struggle with imposter syndrome with their migraines? I always find that I will go through periods where I’ll think to myself, maybe I just get headaches, maybe I’m just being dramatic, etc. or if I go through a couple days of not getting one (I have chronic nearly everyday migraines) I’ll think “oh I’ve made it all up and clearly I do not have a migraine disorder” Just wanted to see if it’s a common occurrence or just my brain being mean to me 😂
I relate so hard. I have migraine symptoms every single day. I’m usually able to use an over the counter or prescription abortive to get me through it, but even then it’s like playing whac-a-mole. I feel like I’m always complaining about head pain or irritable from it, but if I’m not throwing up and in my dark bedroom with an ice pack etc then it feels like people don’t believe it or think I’m being overdramatic. I love/hate that it’s invisible.
Perfectly said
Yes!!! I've had headaches my whole life and they have always been "bearable", as in I just struggle through the pain and some are worse than others, but I've only had one or two that left me bedridden. I've heard people say "if it's a migraine, you CAN'T work through it, you'll know if it's a migraine because it's unbearable, you can't be in the light or near sounds, etc" and that lead me to believe only those one or two horrible ones were "real" migraines. These myths were pretty harmful it's still hard to believe that the headaches I've had my whole life have always been migraines, since I was able to go to school during them, go to work, live my regular life, just with a bad headache. So when I started taking nurtec for my headaches, and my doctor has assured me that this medication ONLY works on migraines, so if it stops the pain, it's a migraine, and it cleared away every single headache I've gotten since then, I couldn't believe it! Even my "small" headaches, even my "I just have a headache because I haven't kept up on drinking water" headaches, even my hungover headaches go away when I take it. It just felt so validating to realize that people are wrong and migraines don't have to be the worst pain you've ever felt in your life. It still makes me feel crazy because no one talks about it! I still sometimes Google if nurtec works on regular headaches because I just can't believe that so many people told me wrong about migraines and made me feel like mine weren't bad enough to be migraines. Even typing this, mid-aura with no headache, I'm questioning if I get real migraines or if I'm just being dramatic 😭 It's crazy-making.
"if it's a migraine, you CAN'T work through it" haha! It's nearly impossible sometimes, but we still have to pay the bills, and medical bills aren't cheap. Migrainers are pretty tough and do what we have to do to get by!
I also wonder if I'm just being dramatic and it makes the entire thing so much worse. I feel like I'm going insane and keep telling myself to get a grip and go on about life, but that doesn't make the symptoms go away and trying to not cry makes the pain worse, but crying makes it way worse. It's like I'm locked in this body that just won't freaking cooperate and I wonder if it's psychological and all made up in my head.
That’s a good thing to remember. Nurtec takes my attacks from an orange to a yellow (or even lime green!), but doesn’t erase them. If it wasn’t migraine, the Nurtec wouldn’t do anything.
I also try to remember what it was like before my preventative shot. I had red-orange level vertigo for weeks on end. It certainly still flares up, but most of the time I’m just moderately unsteady instead of feeling like I’m going to fly off the world.
I have migraines with no pain at all sometimes. I'll have dizziness, disorientation, nausea but no pain.
Another vestibular migraine sufferer here waves yeah with these sometimes the headache either doesn't exist or is the least of our worries. I get convinced I'm just lazy and making it up (which sends me into a depressive spiral) but it's probably more that us migraine folks keep pushing through until we burnout and are forced by our bodies to stop
Yes, 100%! I'm glad I'm not alone, I was just thinking about this the other day.
I totally do, and the level of complete bullish-ignorance I’ve displayed to myself about it makes me wonder if it’s a distinct migraine symptom (some portion of the hormone cycle feeling like “maybe I’m making it all up”).
I mean, me being just really stupid is a distinct possibility too, but normally I’m good with patterns and stats. I do ok at the poker table…
10 years into this I’ve got blocks of month after month in the migraine journal that are 2-5 days in migraine, a few hours-days wondering if I’m just malingering and it’d all go away if I mentally let it, then another 2-5 day migraine. I’m worried the worst thing in my life might magically get better.
Here’s how I think of it: migraine-neurology means your brain is capable of migraining, like your stomach means you can vomit. Once is enough to “join the club”, there’s no glory in it, and the goal is to feel as good/normal as possible as much as possible.
Im so glad you brought this up!! Yes absolutely yes!
My migraines were chronic at the worst point and I still basically gaslight myself at times into thinking “it’s not that bad”, and “other people have migraine worse”, and “maybe my neurologist thinks I’m not a real migraine sufferer”.
Like, what the hell is this? We need a psychologist to come into this thread and break it down for us…
Me too. I have one good day and start thinking I must be exaggerating only for reality to hit me within the next hour.
Yes, yes, yes! This is the primary reason I have been putting off going to a new doctor. I know what I go through isn't normal, but then I have a day where I feel a little better, or I don't take as much OTC meds, and I think to myself that I really don't need to "bother" another doctor with it. I feel like I'd be wasting their time.
Then the "others have it worse" trap begins, and I question what I experience against what I perceive others experiencing. No matter how badly I hurt, I feel guilty about seeking help when I know there are others who indeed have it worse.
There's also the absolute dread of hearing yet another doctor tell me that I'll "just have to learn to live with it."
This is how I’m constantly feeling. It doesn’t help missing work so much and just missing life in general.
Ever since the supposed “best neurologist on the east coast” told me when I was 15 that my chronic intractable migraines were because I was “too emotional”, yes I have thought this often
All the time. It's so weird. Logically, I know I'm in severe pain, but I sometimes convince myself I'm a fraud, and am exaggerating. Am I making up this nausea or dizziness? Am I really having an aura or hallucinations? Why don't I just suck it up? Constant self doubt. :(
All the time. I also love to plan my life like someone who has 100% functionality at all times when I get migraines several times a week that make me incapable of doing much of anything.... and when I have them (like now) I try to psych myself up to trying to do things. I just tried to work. But I can barely think straight. Then I tried to do dishes, got "maybe im about to fall over" dizzy in seconds
Absolutely. I’ll actively have a migraine, and still be like “hmm but maybe I’m a liar? Maybe it’s not that bad?”
Constantly lmao
Absolutely. I was downplaying my pain yesterday, went to grab some tea for my nausea, and nearly tripped on myself 3 times in a 20 foot walk because the pain was so distracting. This was one of the more mild ones. And yet I still subconsciously buy into this being a fake disease of my own making
Yes, especially when everyday is the same. But then I read so many other experiences like my own and now I know this sht is indeed happening.
I started today as Day 3 no migraine. And I'm immediately thinking... Maybe that's it? No more? Maybe I just thought myself sick? Maybe I exaggerated everything? And man I feel good!!!
And now 4hrs later I'm wondering if I should take my meds or not. Because my head isn't feeling right but it hasn't fully hit yet. Looking back at my diary, I have a one week period with no migraine and just How???? My usual max is 3 days between.
Absolutely! I was explaining to my husband recently that when I’m going through a pain free period I tend to second guess whether I actually have migraines or not. But when I’m going through an episode, I forget what it feels like to be pain free. It’s so weird!
I feel like this ALL the time. I'm either having a migraine or thinking I'm exaggerating the whole thing. It being internal and basically invisible doesn't help
Yup ☹️😞
Yes totally
I have brain stem migraine with brain stem aura. So symptoms appear more like stroke, MS relapse, or heart attack. I do not get headaches. I call my migraines "episodes," because I can't bring myself to call it a migraine without a headache. They're still EXTREMELY debilitating and I have been to the ER several times since they started - including by ambulance - and had stroke protocol and heart event protocols run on me. I can lose my ability to stand, walk, hold things, read, speak, and swallow. Chest pains and palpitations that feel like my body is trying to die. Still feel like a liar calling them migraines.
no, migraine aura, and several other symptoms very clearly seperate what is a migraine, and what is a headache for me. usually i will know i am going to have a migraine before i have any pain. (unless i wake up with one, that sucks cause treatment early is the best chance at stopping the migraine.)
what i did get is bullied through middle and high school when people would think i was making it up to get out of stuff. so its less imposter syndrome, more a discomfort revealing my pain levels around other people for any headache.
cant hide the migraines very well, but i still sort of try act it off.
Same with the aura. Mine are mostly silent migraines (so zero pain of any kind) but the auras are so stereotypical that it’s not really possible for it to be anything else, it’s about as definitive as a diagnosis can get. Lots of things can cause head pain or nausea, but scintillating scotoma? That list is short
It's not fair to feel crappy the only times I feel good. But that's how it is. Then when I am feeling good I'm compelled to work like hell to catch up on projects. Which usually takes me out.
I could feel clear for a few hours in the morning And be like oh wow it's nice to be human, but it never takes much to bring it all back 😔
Just got to enjoy the moments we can!
I felt this way but I recently had an MRI that shows white spots on my brain that indicate I suffer from migraines so now I have definitive proof.
Lol yes.
I have this… A. LOT. I actually got a really good therapist a few years back who helped me work through this, and she explained to me that since my migraines are a constant, reoccurring traumatic event, my brain tries to downplay them in order to protect me. Denying that they are real/bad is a defense mechanism my brain uses, because if i truly accepted how bad and frequent my pain was, it would be too overwhelming. But the imposter syndrome also creates this cycle of guilt, making me think that im exaggerating and i dont really have it this bad etc, that other people have it worse and i do constantly discredit my own suffering. But the therapy has helped a lot, and im able to be more accepting of the disability i have. (My therapist also helped me be able to say “i am disabled” for the first time).
This is why i think everyone with chronic illness/pain should be given therapy. Theres soooo much we go through mentally on top of what we go through physically.
Best of luck to you ❤️
I do this with back pain
I did feel that way until I dealt with what I do now. Which is migraines 24/7 to the point I'm bed ridden in a dark room and have tunnel vision and have to be pushed in a wheelchair for doctor visits, only time I leave the house due to the pain. 3 years straight now. I miss my life.
I am so glad its not just me! I have gotten so used to normalizing my pain that when its bad I convince myself its not that bad so I can get on with my life and when its not that bad I feel like I'm too weak to handle the pain when its bad.
When you deal with chronic headaches along with migraines it’s easy to get stuck in your head thinking you’re just exaggerating your own symptoms, that maybe it’s all only headaches. And then a level ten hits thats lasts over a week and your brain says no you idiot don’t you feel that, it’s real! It doesn’t help that migraines are an invisible disorder either.