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Am I wrong? Rant..

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Butterfly

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#1
So I joined a group on fb for people with Schizoaffective disorder and Schizophrenia as I wanted to relate to people like me as I can't always relate here. I made a post asking if there were any recovering people with Schizoaffective as I'd like to chat about positive stories and how people stay well. Well I got my head bitten off. Most people told me horribly that the illness couldn't be cured but that's not what I said. So I reworded it and asked if people were in remission to which I was told horribly that it's not possible and that "it's not cancer", that meds will stop working and I won't be well for long.

I was peed off. I only wanted to share positive stories.
 

Lane

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#3
So I joined a group on fb for people with Schizoaffective disorder and Schizophrenia as I wanted to relate to people like me as I can't always relate here. I made a post asking if there were any recovering people with Schizoaffective as I'd like to chat about positive stories and how people stay well. Well I got my head bitten off. Most people told me horribly that the illness couldn't be cured but that's not what I said. So I reworded it and asked if people were in remission to which I was told horribly that it's not possible and that "it's not cancer", that meds will stop working and I won't be well for long.

I was peed off. I only wanted to share positive stories.
You have every right to how you feel @Butterfly. It sounds like members there aren't required to "be nice". Maybe you hit a sensitive issue, like they want to get better but can't. Not sure, playing devil's advocate. But mostly I'm sorry that you had a bad experience. Maybe if you give it another try or wait and connect with a few members. I can't imagine a whole forum full of jerks.
 

Bergerac

Lost are only those who abandon themselves
#6
Pleased to hear the admin got in touch and clarified things.
I would possibly say that they are frustrated because they joined that group hoping to find similar support that you did and have not done so, and probably think from that, there is none out there. I would think it sparked that off within them, and they took out their anger.
That group doesn't sound productive to me, so it's a good thing you've found out early on and not spent anymore time there.
It was unkind of them though and they should know better, dealing with the condition themselves. You didn't deserve that at all.
 

Daphna

Ninja of light
#7
So I joined a group on fb for people with Schizoaffective disorder and Schizophrenia as I wanted to relate to people like me as I can't always relate here. I made a post asking if there were any recovering people with Schizoaffective as I'd like to chat about positive stories and how people stay well. Well I got my head bitten off. Most people told me horribly that the illness couldn't be cured but that's not what I said. So I reworded it and asked if people were in remission to which I was told horribly that it's not possible and that "it's not cancer", that meds will stop working and I won't be well for long.

I was peed off. I only wanted to share positive stories.
Sorry for your experience. People jump to conclusions a lot.
 

Sunspots

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#9
No, you're not wrong *hug
Some Facebook groups can be really toxic. I've come off of a couple of BPD groups because all people seem to do is jump down each others throats.

Maybe lurk in the background for a bit until you've got a feel for how the group generally is. Maybe you were just unlucky to have caught some on a bad day or maybe it's just a group of moaning and angry asshats.
 

Nick

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#10
As everyone else has said, you weren't wrong. Sometimes people get so stuck they don't see any way out. They meet someone who found a way to find something they haven't and they get jealous or even angry about it. I've been guilty of being jealous or angry at people for doing the exact things I did and finding recovery and happiness. In reality I should celebrate their good fortune they are no longer suffering, but in the midst of my own struggle that can be hard. All that said, they still shouldn't treat you that way. It's never okay to treat others like crap because I'm jealous.
 

Ixtab

Well-Known Member
#11
I don’t use Facebook but had schizophrenia Diagnosis many decades.

Seems like on social media everyone is a great expert. Honestly, from what I have read, much medical knowledge about schizophrenia contradicts each other and it’s a growing science.

In the forties they thought lobotomies were good, that’s only 80 years ago.

Imo look to the eastern traditions for how they treat us it’s much different. In a lot of South American and African tribes, instead of viewing people as mentally ill, they believe these people are more in touch with the spirit world and they care for the idk medicine men greatly, and are glad to help care for them, to earn favor from whoever they are talking to haha. But it’s a much more positive approach than, “you’re flawed here’s pills you cant afford”. And I hate to tell you this the medicine has not been available my whole life, horrible things were done to me for no reason.

Triggered is kind of a buzz word these days but imagine experiencing these near death institutionalizations and realize the fear these people go through just talking about it.
 

Butterfly

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#13
@Walker I look forward to your reply!

I think some people can't see beyond their own suffering. Which is okay because I was the same when I was unwell. I didn't want to listen to anyone's advice or support because I was so convinced that I was going to die. But I don't think I was rude to anyone, or if I was it was not intentional. Some replies were just negative but not rude, but one girl was gunning for me telling me how wrong I was and was being rude. It wasn't even a debate, just pure downright rudeness.
 
#14
I think some people get so wrapped up in their diagnosis that it becomes their whole identity; so much so that the mere suggestion that it need not be the dominant force at every moment in every facet of their lives, especially from someone with the same diagnosis, is seen as a challenge to that identity and taken almost as a personal insult.

I also think that some communities attract people who feel that way, until they hit a tipping point where those people become the majority and the community culture becomes all about negative people reinforcing each other's negativity until the whole place becomes an unsalvageable toxic cesspit.
 

Walker

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#15
Oh lookit. See, this is what happens when I sleep-post. I didn't remember this *at all*....

What I would've said is that I have joined some FB groups for things in the past and while completely different subjects that you describe I've had similar experiences. For instance, I have a connective tissue thing that is a lifelong progressive illness and factually if you keep yourself in good condition you will fare better as you age. I'm joining this group to see if there's something I can do so I don't wither away as I get older or become a total crackhead junkie, you know? But the people in these groups are like adamantly just raging assholes about the idea that I could insinuate the exercise or stretching or weights or anything have helped me or will help them. Some of them are young (16-21) and are just on the sofa, about to strike up disability payments, not going to school or work, wearing fricking 5 braces all over their bodies and shit. And sure, maybe a few of these people are sincerely fucked up but some of these people are also clearly feeding off each other. Hell, *I* felt worse just reading about it all the time.
Anyway, I think those groups are a frenzy of people who are often like minded and not in a great way. They weed out the "me" and the "you" who don't want to just roll over into a diagnosis or give up our lives to whatever illness or syndrome or some shit a doctor says. I feel how I feel today -- that's all that matters. I don't care what diagnosis there is behind a desk.
 
#16
I think some people get so wrapped up in their diagnosis that it becomes their whole identity; so much so that the mere suggestion that it need not be the dominant force at every moment in every facet of their lives, especially from someone with the same diagnosis, is seen as a challenge to that identity and taken almost as a personal insult.

I also think that some communities attract people who feel that way, until they hit a tipping point where those people become the majority and the community culture becomes all about negative people reinforcing each other's negativity until the whole place becomes an unsalvageable toxic cesspit.
You hit that nail on the head Gonz. I don't do social media, but my sister who deals with severe health problems often has the same situation. My advice is if you don't want to be attacked by the tiger, then don't knowingly go into the jungle.
 
#17
My advice is don't go on FB. My even better advice is don't go on social media(except this site of course). Hate to sound like a knob but I don't do the FB thing for this exact reason. I've heard so many negative stories by now that I think people who believe they are sensible and act such should just stay away, it's just a distraction and a temptation for bad things. And people who are not in control of their emotions or able to take 'the hits' should definitely not be on there, that's my experience.
 

Butterfly

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#18
Oh lookit. See, this is what happens when I sleep-post. I didn't remember this *at all*....

What I would've said is that I have joined some FB groups for things in the past and while completely different subjects that you describe I've had similar experiences. For instance, I have a connective tissue thing that is a lifelong progressive illness and factually if you keep yourself in good condition you will fare better as you age. I'm joining this group to see if there's something I can do so I don't wither away as I get older or become a total crackhead junkie, you know? But the people in these groups are like adamantly just raging assholes about the idea that I could insinuate the exercise or stretching or weights or anything have helped me or will help them. Some of them are young (16-21) and are just on the sofa, about to strike up disability payments, not going to school or work, wearing fricking 5 braces all over their bodies and shit. And sure, maybe a few of these people are sincerely fucked up but some of these people are also clearly feeding off each other. Hell, *I* felt worse just reading about it all the time.
Anyway, I think those groups are a frenzy of people who are often like minded and not in a great way. They weed out the "me" and the "you" who don't want to just roll over into a diagnosis or give up our lives to whatever illness or syndrome or some shit a doctor says. I feel how I feel today -- that's all that matters. I don't care what diagnosis there is behind a desk.
It's easy to get stuck in your diagnosis. When I was first diagnosed with Schizoaffective I found it hard to accept. I thought I would spend a life on benefits, never work again, being a bum etc. it was like I was accepting my fate that the diagnosis had robbed me of a normal life. But I engaged with my treatment plan and now I'm like a different person with a bright future. But I can see how easy it is to wallow in self pity and get stuck in the whole living in your diagnosis thing.

I like the fb group because I can relate to what people say, but it is also full of negativity.
 

Nick

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#19
It's easy to get stuck in your diagnosis.
This is so true! I get more stuck in my mental diagnosis than my physical ones. Maybe because most of the shit the doctors told me would happen by a certain time didn't happen that way. Physically I should be way worse off than I am, if we go by statistics. That's the problem with sticking purely with the diagnosis and what little we know about it though. There is no cure, sure. Yep. Got it. That doesn't mean we won't find things that make life more livable. Why shouldn't we share those with others? Why wouldn't others with my disease want to hear that avoiding sugar, and this random med, and this over here made a huge difference.

Now ... my mental health ... I get stuck in the life sucking never ending spiraling hole that says it doesn't get any better. On good days, and even semi eh days I know that's crap. On bad days I can't see it. Sorry, I know I already replied here. I just had a thought lol.
 

Butterfly

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#20
This is so true! I get more stuck in my mental diagnosis than my physical ones. Maybe because most of the shit the doctors told me would happen by a certain time didn't happen that way. Physically I should be way worse off than I am, if we go by statistics. That's the problem with sticking purely with the diagnosis and what little we know about it though. There is no cure, sure. Yep. Got it. That doesn't mean we won't find things that make life more livable. Why shouldn't we share those with others? Why wouldn't others with my disease want to hear that avoiding sugar, and this random med, and this over here made a huge difference.

Now ... my mental health ... I get stuck in the life sucking never ending spiraling hole that says it doesn't get any better. On good days, and even semi eh days I know that's crap. On bad days I can't see it. Sorry, I know I already replied here. I just had a thought lol.
That's how I used to view my mental illness. I'm not saying that I'm cured, but I am stable right now. Maybe it will flare up again, maybe it won't. But I know where you are coming from. It really is hard to see the light when your life is so dark sometimes.
 
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