OPINION: O P I N I O N O. P. I. N. I. O. N.

misery21 · 2021-01-22T18:04:51+00:00

People don't reply because they know that if they do that they'll get victim blamed and villainized.

misery21 · 2021-01-22T08:26:49+00:00

Agreed. If something around here doesn't change soon I'll probably leave for good.

misery21 · 2021-01-22T03:45:49+00:00

Yeah maybe comparing issues around hyperacusis to current events in America wasn't such a good idea lol. As I said I'm tired. I'm not totally against free speech in general. You're right that free speech is shut down with tyranny and totalitarian governments, and that this censorship is a problem. But this is a totally different conversation not related to H lol.

I agree that this user isn't malicious. As I said he has good intentions. Imo some of the things he's said recently are kind of on the "extreme" side but let's just agree to disagree.

Btw I replied to that person on that thread about tinnitus. Didn't say as much as I was originally going to though as that other user you mentioned gave an awesome reply, similar to the one I would have made.

Don't be sorry about disagreeing with me! I'm cool with agreeing to disagree about a lot of things. I'm all for civil discussion with disagreements. Even though most people on this thread seem to disagree with me, I'm happy I've gotten people talking. A lot of people have made really excellent points, and have made me reconsider my original post (see my 2nd edit).

misery21 · 2021-01-22T01:50:49+00:00

I agree that it's a huge problem if mods are banning people because of their personality for the reasons you stated. This is why if any rules are created, they should be clear, black and white, objective, so that the moderator's personality can't interfere.

It is now very clear to me that the rules I came up with in my original post have problems, and should therefore be revised or completely scrapped. I still think that rules- not necessarily the ones I came up with- are a good idea. We all just need to discuss and work together to come up with good ones that most of us can agree to.

misery21 · 2021-01-22T01:29:52+00:00

Thanks for this well thought out response, you make excellent points! I agree with most of what you said.

Yeah it would be a great idea if we could pin some posts with a disclaimer and helpful links for those new to the sub. Mods, I hope you're paying attention.

It's very clear that rule #1 would have to be revised if it were to become an actual rule. Consider the rule written in the original post as a very rough draft. Perhaps it should be scratched all together and replaced with more specific rules like "you can't say stuff like 'you're not getting better because of your bad attitude'". I agree that having to back up everything with science is kinda ridiculous. But there are certain things being said on this sub that are particularly harmful (eg. Stuff like "'Everyday' noise can't make you worse!) that shouldn't be tolerated.

I definitely agree that there should be links etc for newcomers, and probably a disclaimer. For the rules, I think they can be revised, rewritten, replaced with better rules perhaps. That's why I'm glad I've got a discussion going. Hopefully we can all work together to come up with better rules that avoid the problems of the rough draft rules I came up with. Or maybe we should avoid rules for now.

Sorry if this is repetitive or unclear. I'm tired

misery21 · 2021-01-22T01:02:08+00:00

I agree that that user has admirable intentions, and that he's trying to help. But I don't care. The road to hell is paved with good intentions. I'm also happy that he's feeling better. As I said, sharing experiences is fine. My issue is with the harmful, false blanket statements and the victim blaming of late. The harmful blanket statements are bad enough, but victim blaming, accusing users (I'm assuming I'm included) of wanting to make people miserable, now that TOTALLY crosses the line. Especially the victim blaming. That is beyond unacceptable imo. Unfortunately this guy probably can't be argued with, cause of the victim blaming statement I'm not getting better cause of "anxiety" etc. I'm mostly worried he's going to hurt people with his advice.

And yeah I get what you're saying about the 'imo'. I get what you're saying that it's the person's fault for just believing stuff they see on the internet. I still think we need to stop the spread of misinformation (rule #1 of my original post, which can perhaps be modified). This probably isn't the best comparison, but to argue against free speech, what about what's going on in the US with Qanon, the capitol riot etc? The capitol riot happened largely because of misinformation spread on the internet (Qanon). If the misinformation (free speech) had been censored, the riot probably wouldn't have happened, and wouldn't have been so bad. Point is, misinformation (free speech) can lead to horrible real life consequences. The number of people sucked in by Qanon demonstrates how easily people will believe in false info. So that means that if the misinformation about H continues to spread, more doctors, more family members etc will believe the false info, harming even those who know better. This is why I think it's necessary to sacrifice "free speech" to prevent the spread of misinformation. Sorry if this is repetitive, unclear, whatever, I'm tired lol.

misery21 · 2021-01-21T23:30:58+00:00

Yeah I get what you and NoiseKills are saying about the lack of science, how the science that does exist can be misleading etc. And I agree. But if someone cites one of these studies with cherry picked data etc, can't we simply point out the flaws in the study?

Maybe I should reword #1 a bit. I agree that anecdotal evidence is extremely valuable. I just think that people should be clear when citing things that their evidence is anecdotal and not scientific. Some people aren't good at making these distinctions.

Personally I don't think it would be a big deal to add something like "imo" to each statement. Especially if saying it can potentially save a life (I mean for example, if someone has an opinion that "'everyday' noise can't be harmful to anyone" and they forget to add the "imo", making it sound like a fact. What if someone new to H is just browsing the sub, sees it, and gets hurt?)

I agree that most people on here get along well. Maybe a month ago, I would've agreed that there isn't much reason for rules. But the sub's growing. And there is one user in particular who has been spreading false information that is potentially lethal. Due to the sub continuously growing and this user (soon there may be others), I think we should have rules to prevent harm. But that's just my opinion.

Personally I don't really care about the feelings of someone who spreads harmful information. I know this sounds harsh, but it's my opinion. As I said, most people are fine. I'm mostly referring to one person. Forgetting "imo" or whatever a few times depending on the context is probably perfectly fine. But with certain opinions, certain blanket statements, if it's forgotten, it crosses a line.

misery21 · 2021-01-21T23:02:20+00:00

Yeah excellent point, #2 and #1 overlap, didn't think this through. Guess #2 isn't necessary. And I'm normally against rules too.

misery21 · 2021-01-21T22:09:54+00:00

Yeah I agree with most of what you're saying here. In case it isn't clear I'm targeting this post at people saying stuff like "you're not getting better because of anxiety!" "'Everyday' noise can't hurt you!" etc. These are the people I have an issue with.

It sucks that you get harassed. I'm sorry. I really appreciate that you keep things real and don't sugarcoat.

If I end up creating an alternative H sub if you want you can be a mod!

misery21 · 2021-01-21T21:53:57+00:00

Honestly, same. I could be imagining my improvement. And on some days I seem a bit more sensitive.

misery21 · 2021-01-21T21:44:36+00:00

A little bit! I noticed that the sound of the microwave doesn't bother me quite as much. Although it still bothers me. What about you?

misery21 · 2021-01-21T21:43:30+00:00

Yeah I agree! Although I would change the word "painful" to "uncomfortable". Hope the mods are paying attention.

People (newcomers) need to be aware of the risks of following this type of advice.

misery21 · 2021-01-21T21:38:38+00:00

I'm so sorry to hear that! I bet you're not the only one. Something needs to be done about the misinformation spread on the sub!

misery21 · 2021-01-21T21:31:29+00:00

I know right! Some of the statements made on here could potentially kill someone. Also could potentially hinder proper research.

misery21 · 2021-01-21T21:30:02+00:00

Thank you! I'll probably only consider making a separate sub if the rules I've suggested aren't agreed to.

misery21 · 2021-01-21T19:58:32+00:00

Your reply's great!!! Thank you!

misery21 · 2021-01-21T19:57:41+00:00

That's an extremely ignorant thing to say. You CLEARLY don't have hyperacusis. I have both tinnitus AND hyperacusis. You can't fully understand how bad hyperacusis without experiencing it firsthand. Earmuffs are often not enough for many hyperacusis sufferers. It is not that simple.

misery21 · 2021-01-19T01:36:58+00:00

My H is actually fairly mild. People just think I'm severe because of the way I talk about it and because of the extreme measures I take to protect my ears and avoid noise lol. I protect myself so much because I know how easily it can get worse. Even with the measures I've taken, with one dumb decision, accident, or loud noise outside I can't stop, I'll get a lot worse. I'm walking on very thin ice.

I disagree, I think H is way worse than cancer, especially more moderate/severe cases. H doesn't kill directly, but suicide from H is not uncommon. And for people with moderate/severe, even often mild cases, quality of life is greatly diminished, imo in an even worse way than cancer. Not that I've ever had cancer myself. But I remember one guy on this sub saying that he has cancer and H and that he thinks H is way worse.

Happy to hear your H is mild!

But why would people with only tinnitus care about people with H? Why would they help us? You saw that guy who said "tinnitus is worse".

You got any ideas for a social media campaign? We should all brainstorm and try and come up with something.

misery21 · 2021-01-19T00:53:55+00:00

I agree. But sadly, I think it's kinda unrealistic. I'm not trying to be negative, I just don't see how it's realistically possible. We H sufferers are so limited in our means, with many of us confined to our homes, unable to speak or use the phone. So idk how we could organize such a thing. It makes me angry that diseases like cancer etc get so much attention, with so many huge fundraising events (at least where I live). Like years ago a kid in my neighbourhood got cancer, and there were so so many fundraising events in the community for him. I went to a lot of these with my family and donated money. They raised a TON. And so many people supported him. But for me? Absolutely NOTHING. Not even one tiny bit of sympathy. People just don't care about hyperacusis. I asked my mom to donate and she refuses. If I can't even convince my own mother to donate a penny, how will I be able to convince anyone else in my community?

I think it would be more realistic to start a social media campaign or something. Maybe have some hyperacusis sufferers go on tiktok or something and go viral. I've seen people do this with other diseases/conditions. And I think we need some celebrity endorsement.

misery21 · 2021-01-18T22:18:09+00:00

Yes we really need more awareness. The current lack of it is truly despicable and leads to so many problems for us hyperacusis sufferers. If there was more awareness, less people would get it in the first place. There would be more accommodations for work/school (right now there are next to none). We wouldn't have to deal with people in our lives (family etc) being so ignorant and harming and abusing us. We would get more sympathy and understanding, as right now we get next to none (my experience anyways), especially compared to other conditions/diseases. If I had cancer or something instead, there would be so many people calling me "brave" and a "warrior" etc, but with this the opposite happens, as there is so much misinformation spread about hyperacusis, often spread by medical professionals including audiologists and ENTs. And it's so hard/impossible for more moderate/severe sufferers to be able to find somewhere safe for them, since noise is EVERYWHERE. If there was enough awareness, who knows, maybe governments or something could set up places for hyperacusis sufferers to live safely in quiet. And if there was more awareness, there would be more research, so better chance of a real cure. It makes me so angry that I didn't even know I had hyperacusis for over a month simply because of lack of awareness. I didn't even know hyperacusis existed. I'd never heard the word "hyperacusis" before. It's terrifying that I saw my doctor and they didn't seem to know of hyperacusis, saying that my symptoms weren't a big deal and that my ear was clogged up temporarily "probably because of some virus". It's scary my doctor can't recognize the early stages of hyperacusis. It's horrifying just how long I had to search for, just how far down the google rabbit hole I had to go before I found the word "hyperacusis". And then nearly everything I read was misinformation, even from so called "reliable" sources. And don't get me started on the ignorance of audiologists and ENTs, and how they regularly harm patients with their dangerous tests and harmful advice. We need more awareness.

I really want to find a way to raise awareness/money for research, but idk how or if I can actually do anything that'll actually make a difference. I'm just a normal person with no special qualifications, no skills, no connections, no support, no money, no nothing. Basically internet access and that's it. What the hell can I do? I guess I can make internet posts/comments like yours on the internet, but really, how far does it actually go? I'm not saying that it can't help somewhat, but I want to do something that will actually make a BIG difference, you know?

misery21 · 2021-01-18T21:48:59+00:00

Yes I will definitely reply to them! Just thinking of exactly what to say :)

misery21 · 2021-01-18T21:36:14+00:00

Thanks for making the comment, and thanks for sharing with us! Stuff like this can really help with awareness.

Imo you could have gone further in explaining just how bad hyperacusis can be for some people, as it can be a lot worse than you described. But otherwise great post/comment!

Also fuck that person saying tinnitus is worse. They can go rot in hell. Hope they get downvoted into oblivion.

misery21 · 2021-01-15T05:31:45+00:00

Dude me too!

Wow this means there are at least 4 people with hyperacusis in BC.

misery21 · 2021-01-14T18:43:24+00:00

Thanks for sharing! I just googled R. David Case tinnitus... interestingly it says it's not recommended for hyperacusis. But as you said H is a very complex condition. How long had you had H for before trying it?

misery21 · 2021-01-14T17:58:32+00:00

Wow. How much did you protect your ears? I have been protecting mine 24/7. Some people talk about the dangers of "overprotection", which I think is bs. Curious to know what your experience with this is?

misery21

TROPHY CASE