Why Making "Blanket Statements" About Schizophrenia Can Be Harmful


#21

sad attempt to humiliate me, unlike many i deal with 2 non treatables in my house, good by,


#22

Please, just ignore “Catherine”, and anyone would like to add to the burden of those of us who deal with the untreatables.

My heart goes out to all of the people that are afraid to post on this forum for fear they will receive the same treatment. We are the only place they can talk about their struggles. They need to be able to read about yours. Anything besides hearing sunshine and rainbow stories that they suspect will possibly never mirror their lives.

I discussed this sort of behavior recently with my Family to Family lead person. She said she was guilty of the same sort of thinking “her way worked with her son” so everyone else is just a slacker of a parent/family member. Years and years of teaching the class and teaching instructors how to teach the class taught her that she was truly fortunate to have a son who responded to her methods.

Sometimes I wonder if the “life is sunshine on meds” stories are puppets for the pharmacy industry. Surely it must be questioned.

Their life can be such an opposite to my reality as I sit here dreading the return of my son who is severely ill with scz. I know my heart will lift with joy when he returns safely. I can stop worrying that someone, somewhere, is hurting him.

The people who love deeply and dread need this forum to be welcoming to all.


#23

For the record, life on meds is not sunshine for anyone. At this point, I credit them for saving my son’s life and keeping him out of a nightmare world, but he will probably never be 100% better. He got sick so young & so fast, that we don’t even know what 100% better would look like.

However, I always maintain hope that something better will come along - and then, I think how tragic that would be. How awful it would be for him to get 100% better and then have to see how much of his life and potential were wasted. Then, I have to feel guilty that I could even consider cheating him of that, even if it’s just in my mind.

For me, seeing a one or two line response that says there is no hope, the medications don’t work, and you should probably just give up, is a shock to my system - because those words illustrate my deepest fears. Fears that could very well come true.

But, I need that shock to the system and that reminder so that I don’t slack off.

At this point in my son’s life, the meds are the only thing that stand between him & either death or maybe a catatonic state. In the past year, I’ve seen him get so ill that I could barely get through to him. I’d have to turn his face and repeat myself over and over before he even recognized I was there. He didn’t have enough cognition to know he was standing in the middle of traffic, and as soon as I turned my back, he’d be back in the middle of the road. He had so much generalized anxiety and fear that the ER had to take him through a physical check to make sure he wasn’t going to stroke out before they would send him to psychiatric. And, for the first few days inpatient this last time, he was so out of it that he kept taking off his clothes wherever he was - something that would mortify him if he remembered it.

That was just 3 months ago. The meds took him from that state to just slightly delusional in a week and they’ve kept him there at a relatively low dosage this time. To me, the right med feels like a miracle - even if life for us will never be “sunshine”.

I’m so sorry that you can’t see what the right med could do for Jeb, but I don’t think you’re a slacker. I think your hands are tied and you’re doing the best you can - I think that’s what everyone here is doing.


#24

I didn’t ‘add to’ anyone with ‘untreatables’ burden, not at all, and any humility felt by gssp is his very own and not caused by my mere suggestion that we continue to tell our stories personally just as they are but not to suggest that everyone will have the exact same outcome.
For the record hope, my life has never been ‘sunshine and rainbows’, for 5 years my son appeared ‘untreatable’, I have shared my stories, he didn’t only pace he would walk miles until his feet were bloody, he almost killed himself twice and was addicted to drugs…the list is endless of what he and I survived, and I wholly agreed with gssp that my son and are members of that list of statistics.
I didn’t like seeing the statements like " run away and never look back" --run away if you want to and tell us about it but don’t advise others to do the same thing, if anyone decides to do that it should be their own decision. I carefully considered what I said and I said it with great care. I’m not going to apologize for my son being in remission of the worse symptoms of sz at this time in his life - it took a lot of very difficult and frustrating years to get where we are and I am smart enough to know it could all change tomorrow.

I shared here to try to help keep hope alive, and I accept some will lose hope, I lost hope many many times but I managed somehow to get it back. If my positive stories about me and my son offend anyone, OR if you insist on proclaiming to newcomers that they should run away and never come back ( from their sz loved one) because their loved one won’t get any better… there is a mute button for users here, and you can add Catherine to it. Peace to all.


#25

Wow. This thread is becoming extremely nasty. Let’s try not to judge anyone. We are all in pain.


#26

Thank you @slw That was my main point exactly, I did not intend to call anyone out at all or come across negatively, and I did say that it was just something to consider, I never had any ill will or judgement towards anyone who found offense at my suggestion. I was surprised that anyone was offended as that was the farthest thing from my mind. I will think twice about sharing what I believe to be a positive suggestion in the future, if I post anything at all. I am grateful that you and @dkgreg understood the true spirit of what I said. I just believe that sometimes hope is all we have.

Honestly seeing comments that I should be “ignored” and that I made an attempt to humiliate anyone and that the thread is extremely nasty etc…omg!! it’s so not what I want to be a part of. I do not understand how such a good hearted intention got so terribly misunderstood and turned around. It hurts to be misunderstood by your peers and if I made anyone feel that way, it was totally accidental and completely unintended.


#27

@Catherine
Please don’t feeI “I will think twice about sharing what I believe to be a positive suggestion in the future, if I post anything at all”. I, for one, need to hear positive suggestions. My heart goes out to all the untreatable and treatable. This is hard on all of us. My daughter has had sz since very early childhood, but did not get any real help until she was 30 despite being hospitalized twice as a child and despite all the meds and therapy. I was so angry for a long time. It took another 2 yrs to see improvement. All is still not perfect and probably never will be. But it is as close to perfect as we have ever had before and that is a true blessing. I strive to stay as positive as I possibly can. It sure beats all the hand wringing and crying I did for so very, very long. Peace and love to all of us that have loved ones with sz.


#28

@dkgreg thank you so much for saying that. You have been my much needed support today.

I feel like you do in that even though things aren’t perfect with my son and probably never will be, they are as close to perfect as they have ever been before and that makes me feel very blessed.

My very best to you and your daughter and everyone on this forum. :peace_symbol::love_you_gesture:


#29

@Catherine

I’ve never read anyone on this forum say it’s all hopeless and give up on our children. I have read in the past certain post berating parents who have supposedly turn their back on their children and congratulating themselves what wonderful parents and advocates they are and how could anyone turn their back on their child. In other words judging another parents pain.

I know you’re a very good mom and advocate for your child and want the best for everyone. The post you have written are heartfelt and helpful but please do not judge parents who are heartbroken over their children who are currently treatment resistant. I’m willing to bet those parents are continually beating the bushes to find help for their child but at some point when a child is completely disruptive, doesn’t care for their children and put their small children in danger where the parent of a MI son or daughter have to take over the raising of the children one does have to draw boundaries. It doesn’t mean they don’t care - it doesn’t mean they’ve abandoned their child - it could mean they are quietly working in the background making sure their child does not end up on the street and also working desperately working to find a treatment that can work. I’m also betting those parents are willing to die for their children if it helps their children get well.

It could also mean that those parents have healthy boundaries and don’t want to end up in an impossible situation where the advocate/parent become mentally unhinged and cannot help anyone.

I have never ever berated or criticized you. I respect you. Most of us are grownups and understand the nuances and unpredictability of this awful disease and have probably read hundreds of books to understand, help and support our mi children. Peace.


#30

I am so tired of defending my post and my intent, I would gladly delete it if I could. I never judged or berated anybody and I didn’t say someone said “give up on your children”–if you read it once again you will see that I only very gently suggested that we all (including myself) think twice about telling others to give up on trying to get their sz loved ones, spouses, boyfriends, wives etc…well again because there is no hope. I said that if anybody is speaking personally about their own lost hope or giving up etc…then that’s what we’re here for to help each other through that, but to tell others right off that their efforts will get them no where and that they should just move on with their own life (because that is what we experienced) is counter productive. It’s my opinion, not an assault or judgement on any of the good people here and I am so frustrated that anyone would think that.

I think as caregivers we need to come to the difficult decision to move on or turn over care giving or throw in the towel or whatever on our own and for our own reasons and through our own experiences. Not everyone is predestined to the same outcome, some will get better, some will not, we can’t presume to know for others only for ourselves–we can only share our own experiences and then say “but yours could be different”, we are all different…

This whole matter of caring for sz loved ones is scary enough all along the way without having our hopes dashed when someone finds this forum and says something like: “hi! I am new here, my wife is sz and refuses treatment and I have no idea what do.” and you see a reply back something like “move on, save yourself, don’t look back, you can’t do anything to help” …My thread that I posted only suggested that we all (me included) try to refrain from that sort of thing…it was only a suggestion that it could maybe be a good idea, food for thought, nothing else. …I made no demands or judgments and I cast no aspersions. I would never do that. I revere the caregivers here.


#31

I’ll cut to the chase - whoever’s offended can just be offended.

Catherine was talking about GSSP’s posts where someone would ask a questions, usually if there was any hope or if they were doing the right thing or if they should just give up.

Instead of starting off with “in my experience” or "for my family members, he would just say –
The meds don’t work
It doesn’t get better
you should cut your losses and leave.
Clozapine is the worst drug out there

I understand why he was saying that kind of thing. He was overwhelmed and feeling hopeless himself - and that was his experience. His wife and daughter are not getting better. Most of the meds have not worked for them, and the ones that did work only provided limited results. He’s getting older, like the rest of us, and his own health is failing. He’s worked his entire life, fought for his family members, and he feels like it was all for nothing.

I think it’s fine for anyone to voice their opinion, no matter what that opinion is, but we need to remember that people come here in desperation sometimes - maybe they’ll come back & read other responses. Maybe they won’t.

But, to state your experience as the only experience, whether that’s your intent or not, could be sort of dangerous.

At first, I was like what an A-hole - and I felt very sorry for his wife & daughter because the tone of his written words was that they had ruined his life and were continuing to ruin his life. But, once I watched a couple of his videos, he was very kind, calm and caring with them - a direct opposite of what I thought at first.

It looks like he’s gone and I hate to see him go - we need all viewpoints here.
But, I do get what Catherine is saying. I felt the same way.
I didn’t count his family members as unmedicated. And, he obviously had never deserted them and had tried every single thing he could think of.

I still don’t get the whole perception of a medicated vs unmedicated rivalry on this site - I don’t see it. Everyone has been unmedicated at one point, and could be again at any other point. We spent the first 3 years unmedicated by choice because we had a problem with how easy they medicate children for ADHD & other issues these days instead of trying to deal with things in other ways. Sadly, that did not work out well & I wonder if things would have been different if we as parents had made different choices back then.

I also don’t see people judging family members who had to walk away. Maybe a random comment or something, but it’s not the entire theme of the site. I’ve certainly had my moments where I wanted to pack up & walk away from everything - my son, my husband, my job - everything. I think we all do. And, I’ve had moments where I thought I should have my son placed somewhere else - maybe I’m a huge part of the problem. That idea is always in the back of my mind.

Well, that was an awful big brain dump for me starting off by saying I’d cut to the chase, so I’ll drop the subject. I should probably never have even started posting.


#32

People who deal with the chaotic situations that schizophrenia brings into their lives are going to have a host of emotions.

If honest, some of those emotions are going to be pretty negative.

This is the place where others can understand those feelings.

Just like every other open forum - a person reading can identify with some of the posts - not everyone will identify with all the posts.

If someone doesn’t like something someone writes, they can figure it doesn’t apply to their particular situation.

Newcomers to this board may be put off by nearly anything they read. We certainly can’t protect them from the harsher realities of schizophrenia that are faced by people on this forum - we can just offer the honest feelings and thoughts from our own experiences and hope something that someone writes, helps someone else.

New to this forum, new to schizophrenia? The person who helped me understand what was wrong with Jeb, had a good sense of humor. Once my eyes were opened she said, “Welcome to our club” I answered “Welcome? I’ve been in this club a long time, I just didn’t know it”.

The Schizophrenia Family Club has a lot of different kinds of memberships - but its all the same club everyone and their experiences needs to be welcomed.

This is my last post on this thread.


#33

I enjoyed this thread immensely, lets you see clearly…


#34

@GSSP - nice to see you back


#35

Dear @Molly, i totally hear and feel you!! your post made me cry because i am in a very similar situation with my son, i have spent thousands of dollars on ‘alternative’ stuff, nothing helped. he is also treatment resistant and the illness is getting worst over the years. no one can imagine the heart pain we are going through, the indescribable suffering we experience when we see our loved one in the sad state they are in, the hopelessness, constant heartbreak, for so many years… people say ‘make sure to look after yourself’ to be honest i am tired for this phrase because i don’t know how to look after myself. we live through our children and if they are suffering and not being able to do the most basic things how can we ever be happy and live a normal life? i don’t want to make you feel worst but i want to let you know that you are not alone and we are our own community of carers who understand eachother. i just wish we could all be living nearby so we can talk and share experiences, hug eachother, give hope to eachother, laugh and have a bit of fun together. but the world is such a large place which makes us very isolated. anyway. i don’t have any advice but my heart and soul can feel you. Hug.


#36

lol, @hope, as @slw says, life on meds is in NO WAY sunshine for everyone. I’m grateful for the reprieve from the worst of the psychosis, but it has not been eliminated. My life is a constant struggle to balance work, home, and care for my loved one. Just like yours is. If my son decides to stop taking his meds, I am right back where you are, and sometimes we are not too far from there anyway.

Nobody is judging you for how you and your family are doing things. We all share similar pain.


#37

Hello everybody
My gf of 10 years has schizophrenia
I grew up with an older brother who I helped take care of when I was 10
I understand a lot of what you are all probably going through !
I literally almost cried when I found a support system to help through this…
At least to talk with people going through the same thing
Hello! :slight_smile:


#38

Hi vallpen!!
Hope all is well!
I’m new to the group
And I feel you!!!


#39

I love you for this!!!
Thank you!!


#40

We are keeping the faith with our daughter. That is all we have. This site has shown us that they are a lot of people in our same situation.