fandomsecrets | [ SECRET POST #5654 ]

[ SECRET POST #5654 ]

⌈ Secret Post #5654 ⌋

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Sorry about this. Feel free to vent down below if you'd like. I just need to vent somewhere about this and I am not sure if there's an appropriate subreddit for this.

So, thanks to my migraines I went after a neurologist, and a few imaging exams later we found out that I have a brain ... thing. This thing *may* explain a lot of apparently unrelated symptoms I had in life such as (disorders and autism but also) migraine, loss of bladder control, puking, transitory aphasia, forgetfulness, visual processing issues - just... a lot of things that made me a "haha, sickly & quirky" person but actually made me struggle a lot growing up, get bullied and gaslit nearly to death and become a depersonalized and frightened loner over being VERY vulnerable since it was bad, but not frequent enough to warrant a visit to a doctor growing up in a poor environment. Just the occasional "oh no, WTF is going on with my body/brain now?" .

Ever since I found out about this it's like a heavy weight was lifted off my shoulders. Back then I would put myself through unimaginable pain just to get by, and was gaslit into believing that everyone was struggling as much as I was. The pandemic, ironically, opened my eyes to the fact that I worked better than many people in a stress-free environment (home) and that most people couldn't be bothered to wear a mask, which seemed like a minimal disturbance compared to everything I went through every day. Before the pandemic I honestly thought I would die very soon. Turns out my migraines were caused by this thing and indeed I could've died of a stroke at an early age. Worse yet, could've ended up on a wheelchair and turned dependant on my small aging family.

So yeah, honestly, I am doing great right now. In fact, a lot better than ever before. I feel less vulnerable and more in control now, and have a legitimate excuse to be a loner for a while so it's been a win/win situation, in a way. I still struggle with money and employment but /when have I not haha/ so it's okay. Anyway, the only part that's been difficult about all this is that I can't explain it to others. This thing has a name but it doesn't begin to explain it. It's the kind of condition that can cause anything ranging from "nothing" to "sudden death" so the name isn't enough.

And so, my friends (the few friends that I have) don't know about this. They know I've been seeing doctors but that's about it. There is no quick or easy way to explain the psychological *grip* it's always had on me. Of course some of them have witnessed me at my worst and been at a loss. What are you supposed to do when a friend suddenly starts throwing up on the car, can't understand what you're saying or go back home? I never drank alcohol, did drugs or anything like that (because I always knew my brain haha) so it's always been confusing for everyone, at best, and I am aware that I can go from "very competent" to "a huge pain" in few seconds, and they learned to deal with it and "spoil me" but I despise relying on others. At this point I am VERY glad I can stay home instead of being disoriented outside, but still not fully healed (trying to avoid a scary surgery that may be unavoidable, and may or may not be helpful?) and that's it.

In short, my brain plainly sucks on some days, and I've come to accept it as long as I am inside (because it's harder for migraines to kick in) and alone and nobody can see it and I can rest but I can't really explain it. And I want to lead a normal life but I can't do that *everyday*. I can put off things, I can skip a concert, but I can't say "hey, sorry about missing our appointment or doing everything half assedly today, sucky brain day". So I have been giving excuses and doing things half assedly, but it's almost like I am being a bad friend on purpose. It's nothing personal, and it's not about my feelings either, it's just... sorry I can't do the friend thing right now, health issue, maybe I will be able to get back to it in a few years? How to even get this point across when you're not comatose or...? It's not even depression or anything like that, just an actual physical brain thing, which is the hardest thing to explain. It's not "no biggie" and I probably won't die tomorrow because of it either. Nothing has changed and I don't deserve pity I am just kinda sick with a Thing and hopefully recovering (instead of getting worse until dementia which would be the usual course) ??

... my head is burning now that I have typed so much (after going out with a friend and failing miserably in many ways) shit. Maybe I should get some sleep, lol. Anyway, I wanted to share this to hear some perspective from the other side. What would you like to hear from a friend who struggles with something like this? I am not good at explaining things so I try to pretend everything is fine, and it really is *sometimes* . And I don't want people to think they have to spoil me anymore, unless leaving me alone means spoiling. I don't know. It's all confusing.

Separate Vent from OP:

You know you're still in a male dominated society when everyone and their mother talks about how something "Goes hard".

anon i mean you no ill will here but you are completely misunderstanding that phrase

I prefer the phrase "hardcore" instead.

It has no relation to having an erection???

...I'm pretty sure it's more akin to stomping on the gas pedal and peeling out than a hard dick.

Shit, OP, that's clearly a lot to deal with. Maybe do get some sleep, and possibly some food and water, whatever helps you.

(I should probably get some sleep myself, so take all of this with a pinch of salt and hopefully some charity for my inarticulate statements.)

I think you should do your best to explain to your friends what's going on with you, if you feel comfortable disclosing. Explain what's hard for you, what you need to do to take care of yourself, and how that's going to impact your friendship (and potentially make you seem like a "bad friend"). Maybe you can't easily explain the full impact of what it means for your existence, but you can hopefully describe a little. It might not even make perfect sense to them, but I would hope that they could at least understand "Anon, my friend, is having a serious brain issue and needs to take care of themself." Personally, I would much rather hear that from a friend than simply have them disappear from my life and wonder why.

I also really hope you can distinguish between pity and sympathy from your friends. I don't pity my friends or family -- I care about their wellbeing and I am sad when they're sad or struggling. I want to help, if I can. If your friends try to express their sympathies, I hope you're open to the idea that they genuinely care about you and aren't just being condescending or pitying.

Good post, good advice!

OP here (I did!) - Thanks a lot, anon. :) Hope you're getting some rest too.

Thanks a lot for the advice. It IS sound advice. You are right, I would rather hear something like that, too.

Yeah, my bad behavior... on one hand, I have grown to be afraid of people to the point that I would rather run away than be confused over whether that's pity or sympathy, because if it's pity, that means I will just get bullied and I don't feel strong to deal with that kind of bs anymore, but being that mistrusting is unfair to the friends that stayed and... on the other hand, I have been let down a few times by my own behavior, so I mistrust myself enough to actually believe that I am doing favors by not chasing after anyone. These aren't excuses, just things to unpack before I could reach the seemingly obvious conclusion that "oh yeah, maybe it's better to try to talk to them than not try at all" . Thanks a lot, again, anon ♥ .

I think you explained very well!
Holy crap, Anon - all of that sounds fucking horrifying and frustrating and exhausting to live through, and I'm SO glad you finally got an answer and a diagnosis. I know I felt that way when I had to have emergency surgery and they were like 'well, you have Crohn's, so that is why.....' Because up until that point, I think a lot of people who knew me thought I was making shit up just to get out of things or whatever.

So - YAY! I hope they have some kind of way to deal with this? A medication or something that will maybe alleviate some of the symptoms? Or at least make them more bearable.

I think if you really wanted to tell your friends, go one at time, one on one, mention something that's happened in the past (hey, remember that time that I ....?) and then explain your doctor found this issue (lesion? tumor? weird brain wiring?) that basically can cause a huge laundry list of issues, and that's what you've been struggling with, undiagnosed, for years, and now you feel really happy and relieved that there's a concrete thing you can deal with instead of random events happening to your brain/body that seem to have no trigger and no cause.

Or just copy/paste most of your post into an email or FB or something and share it - if I were a friend, I'd be thrilled to know you finally have some answers.

Good luck! I'm so happy that you have this information now.

Oh my, thanks a lot! Yeah, actually ... one of the best things has been reading stories like this. Because more than once in my life I was ms. "what's she sick with again?" and for a while I couldn't even meet new people because I was confused about life as a whole so... hearing stories from others that went through difficult things because of health conditions and managed to feel better and recover or get treatment just makes me feel all giddy and hopeful, so thanks, really, and I hope you are doing better now. ♥

Yeah, they're not *sure* but I have been trying some meds (thanks for reminding me lol ... I hate the side-effects of the one I am taking now so maybe I forget it too often ... let's take it.)

The hardest part has been that nobody knows for sure, and I have yet to find a doctor I can fully rely on (hopefully in a few days!!). This thing has probably affected me in the most seemingly random ways. For one, I broke up with my first friend ever because I dropped and ruined 5 of her belongings in one day, and now I know those things COULD be related. Maybe they know it even better than me, so I hope they will believe it.

Thanks again, and best of luck with your battles as well!

Good luck with finding the right doc - i know that's not the easiest thing, *as well as* getting meds stabilized.

But *knowing* what's going on is, for me, the biggest part and the part that really helps. When I was just randomly sick and in pain for fucking *years*, with no insurance so no way to really get in there and get any kind of care, it was so fucking frustrating. But once I finally knew, I could research and read and figure out wtf was going on and how to deal with stuff and feel better.

I think i'm mostly okay, now, but it does flare up from time to time, and I do still have to be careful about what I eat, though not as super-careful as I was for years, so - that's something.
Thanks!
*hugs*

Yeah, exactly. It's true, it IS a lot better than just struggling and screaming and waving your arms like "I SWEAR there is SOMETHING going on". Thank God for the Internet and free knowledge and support communities regardless of what doctors may say lol.

That's great! *hugs* to you too :)

The one good thing that came out of it (other than the surgery/diagnosis) was about 5 years before that, they thought maybe it was endometriosis or something, and when i coughed up the 4000 dollar down payment (thank you, mom and dad), i got a hysterectomy, which was fucking awesome.

I fell into a little sweet spot of having insurance, having had a kid, being 'old enough' (rolls eyes), and having a (sketchily) documented history of issues.

Yeah, that's... lucky, in a roundabout way. Wish I could get one myself (because I also have a condition that puts me at high risk of having a miscarriage if I ever get pregnant because, yeah, no such thing as "lightning does not strike twice in the same place" as I learned recently... and of course that has always been *another* struggle.) so I get what you mean, totally. Lol, sometimes medical ignorance works in our favor?!?

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[ SECRET POST #5654 ]

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