I've been keeping secrets! Sorry again for all the spacing out/verbal pauses and meanderings, I tried to edit at least some of it out. Lots of brain fog today was making it difficult for me to articulate thoughts appropriately. Blah.
Congratulations! Also, I have multiple disabilities, one of which being a misunderstood chronic illness and doctors definitely have a problem with dismissing women. There have actually been several studies about this. I think this is especially true if the diagnosis isn't immediately obvious to them. There's a whole attitude of "if I can't explain the symptoms, they're psychogenic because if they were physical, I would know". Actually, that's what the whole "diagnosis" of "medically unexplained symptoms" is all about. Anyways, I'll stop before I really get rambling about this stuff, but you should totally do some research on it.
And you know, I feel like I SHOULD have already realized that I had previous personal experience with this, because *probably* the reason we never got anywhere a decade ago was because it was dismissed as "stressed/anxious college student," but I honestly think I was just too young and naive to recognize it as that and figured they were the experts, and what did I really know anyway? *facepalm* I've definitely been stewing a lot about the whole "needing a diagnosis" thing in addition to other things, and I think (for me) it just comes down to the fact that it's simpler to explain to everyone else if you have a name to put on it. And I guess in some cases they have a vague idea of what might help. One of your issues is fibromyalgia, right? My oldest sister was diagnosed with fibro maybe five or six years ago? (though who knows if they'll keep calling it that - I know you know how that goes. Seems like they're always swapping labels around) She has way more health issues/chronic illness issues than I do (probably another reason I don't like bringing it up around the family. In the whole scheme of things, my stuff is relatively benign for the most part).
@@MelodyLittle definitely and I have fibromyalgia and ME (they can sort of go together). And don't blame yourself for thinking that. Most people are never in a position where they have to question the experts, you know? I don't think it's on most people's minds. Also, your issues aren't benign because someone might be suffering more. They're bothersome to you and that exists apart from anyone else's experience.
Congratulations!!! Why not show the new neurologist your videos? Maybe record yourself during a bad attack. I would just love for you to finally have answers.
okay now i've watched the whole thing. i'm so glad you contacted a neurologist, regardless of whether or not you see one this winter - just as you said, the fact that you contacted them is amazing. it made me grin so hard that it hurt when you described your midwife being so understanding and letting you be so open, i know you need that and have needed it for a long time, and girl you deserve the support. i've been struggling a lot recently and have lost all my mental health support. watching your videos makes me feel less alone and terrified, and i hope us commenting can do the same for you. i hope we can talk properly sometime - i'd love to be another listening ear for you and strike up a friendship 😊 looking forward to theory thursday, and congratulations again!!!! ❤
You're so sweet - and yes, having someone actually listen was HUGE for me! You guys are pretty much my only outlet other than my husband because, while my family would be supportive, I really don't like being the center of their concern and worrying them about my stuff (plus, like, what am I going to say? "yeah, that thing from a decade ago? It's actually still a problem but I still have no idea what's going on.") I SO appreciate your support and encouragement!
