What Can the Mentally Ill Do As a Group?

Allright. Here we are. Hanging around PC helping others and getting help ourselves. Good. That's a good thing. Can we go beyond that? Are there any projects a bunch of us could get involved in that would improve the situation of people like us in the wider society?

Uh-uh. I have no magic answers. That question is by no means a mask for some intense suggestions I have lurking in the wings. I know no more than you do. I'm just wondering. We've lived for so many centuries and millenia as outcasts and freaks, but as you know and as I know we're nothing of the kind. We're real, regular people with a variety of different illnesses, same as all other kinds of illnesses, but who are still looked on as weirdos of some kind, which, of course, we're not.

There are a lot of nice, kind, highly educated people who've been talking on our behalf over the past hundred years, trying to convince the majority that we're like people with TB, or herpes, or whatever, not some kind of demons or whatever. And maybe they have made some progress. Maybe. I don't know. I'm not really sure.

No one's freaked out by people with leprosy any more. EVERYONE knows (now) that leprosy is just another skin disease that's curable, not a life sentence or a death sentence. We're not quite there yet with regard to curability, but we're in a similar situation. We're quite harmless, despite the tiny, tiny number who get so frightened they do bad things.

But I AM sure that people on the outside STILL don't have a good idea of who we are, what we go through, the way life looks to us. I could well be wrong, but I do have the hope that if they REALLY knew what life looks like to us on the inside that THEY wouldn't be so scared and so rejecting. We're just people, people who are their sons and daughters, sisters and brothers, fathers and mothers. Not frightening outsiders who threaten them.

When my Dad was a boy, age 9 (probably around 1922), he had a schizophrenic aunt pass through their apartment on her way to life in a mental hospital in Ohio. He said she screamed and howled all night and terrified him. And then the next day she was ferried by another relative on her long way to Ohio, where she spent her whole life in one of those old-fashioned mental asylums that were abolished thirty-forty years ago. And he remembered her forever after as an object of fear and terror, someone he never wanted to see or deal with again.

Is that right? I really don't think so. I think that if we made our voices heard, if we familiarized normal people with the not-terribly-dramatic normal, everyday interior lives of mentally ill people then those normal people wouldn't be so frightened, wouldn't be scared of "catching" mental illness, would understand that we're just people like them with some bad chemicals in our brains or whatever.

I'm no big deal at all. I have no more ideas than you have. But if we're going to make any progress in the world, I suggest to you that at the very least we have to hang together, pool our ideas, and work together to the best of our abilities. So I'm just asking for your ideas. What can we do? What should we do? I'm kind of tending toward the idea that we ought to get together and publish a book with many of us describing just what we go through every day with our diagnoses and our pain and misery. Not being overly dramatic, mind you. Not at all. Being sober and realistic and not exaggerating. The truth is bad enough. We don't have to embroider it in any way. I think. What about you?

Take care!

I think you have a good idea Ygrec23. In my own stay here I have learned a lot of things about different people and issues they deal with that I never really understood before. I have found that even though some people have certain disorders, they do find ways to have productive lives and can be helpful to others on many levels.

Ofcourse it would be important for all of us to remain anonymous and feel free to really express our personal struggles but it could make a very interesting book.
We could all talk about a good title for the book and we can all contribute to the struggle of each or our disorders or issues and what it really means to us, verses what it means to professionals that study these disorders and prescribe medications and various therapies for us.

I am not sure how that would be able to formulate, maybe have a forum where we can each talk about what we have and what it means and how we deal with it etc.
Then, maybe DocJohn could set a date and take the information in that forum and decide what consistant struggles and progresses are presented.

It would be a very interesting book, a voice from the inside of a troubled mind.

Open Eyes

It is an idea... there's a commercial/ad on television that portrays celebrities with their mental illness suffering relatives. It is a good view. What it shows is that the mentally ill ARE US... relatives, neighbors etc.

IMO those who don't understand won't understand. The only people who would be seen reading a book on this subject are those whose lives have already been touched by a disorder of some sort. Those who have their eyes closed can't read that way.

Ygrec, a lot of what you wrote reminded me of NAMI. I think their raison d'etre is very similar to what you suggest. Take a look at what they are up to: http://nami.org
There might be some NAMI projects there you would like to get involved in, or serve as inspiration for projects you might start in your community. I like your book idea.

i have mixed thoughts about your questions, ygrec. i find the populous is not interested in understanding we're not freaks. a good example is my son. my ex is paranoid schiz. i am bipolar1 and have other dx's too. i have suggested he read up on his parents' MI to better understand our MI. i've even given him articles to read. result-nada. i believe many people are afraid if they read about us they may find themselves wondering about their own mental state. (my son included) it's like making the cross in front of a vampire. other people don't go even that far. they are just not interested. they automatically apply the stigma instead.
what can we do?
i'm glad some celebs have spoken out and/or published a book about their MI. but the focus is that they're a celebrity with something juicy. patty duke i believe did help ppl note MI, for ex. but i don't know if a book by those with MI would attract ppl to read it unless it had a curious title to attract readers.
i guess i'm not very optimistic but i believe your thoughts are perhaps on the right path. the question still remains "how?" in a constructive, appealing manner. i don't know what is the answer. perhaps contacting NAMI could be a start.

Mmm... well not everybody here is 'mentally ill' as you put it. Some people here view themselves as people who have endured lifes difficulties. Not 'mentally ill' but having faced mental health difficulties and have come out the other side. I see that you yourself are in the mental health professionals social group so you must view yourself as someone who supports others in a professional way, no?

I feel what you need to do is to stop comparing yourself to someone with leprosy or for that matter anyone else who has faced mental health problems as one in four (yes; one in four!) people have faced mental health difficulties in their life. Mental Health problems come to us all, nobody is a 'freak' (as you put it) we are all on this planet together.

I do feel it is good for any of us to do our bit in spreading the word that we can support each other in what ever the difficulty in their (our) lives are. We are all human.

and then there's... Roseanne Barr! She currently has a popular show on cable: Roseanne's Nuts (she has a nut farm she lives on in HI) ... she suffered (s?) from DID.... yet seems to function ok, but I'm sure her humor is part of that acceptance?

I personally let everyone know that I am bipolar so they can see that we can live a normal life and are not crazy killers to be feared. I have plenty of friends and I a have had other people come out of the closet after hearing what I have to say. I meet alot of people in AA meetings that are bipolar and we share our experiences....good and bad.

I've read and found that if people can rephrase how they tell others, that it will help them be more acceptable. To say "I'm schizophrenic" scares them where as "I suffer from schizophrenia" (as example only) helps them to begin to realize that it's not who you are, but a dis-ease. From there we do need to help them realize how these are disorders and not who you are.

Well, madisgram, I surely don't have any magic key to opening this lock. The book suggestion was just a spur-of-the-moment thought. I do thank you and others for putting me on to NAMI, which I didn't know of.

But I'll tell you. The number of intellectually curious people in our country may not be all that huge, but there really are a lot of them, I think. The kind of people who would be intrigued at the idea of reading about mental illness from the inside, what the world looks and feels like if you have a particular condition.

And you've got to start somewhere. I will go to the NAMI website and look around and see what they're doing. I'm very interested. If I find anything I think other people ought to know then I'll come back here and post it. Thank you very much for your thought and consideration! Take care!

I usually start out telling people I have a mood disorder when the time is right. Like when sharing at a closed AA meeting.

Every one of us is free to define their situation in whatever form they believe is most accurate and acceptable. If they don't want to think of themselves as "mentally ill," I think that's fine and entirely up to them. As for my being in the mental health professionals social group, I consider that as a great compliment but not terribly deserved on my part. I worked for many years as a family mediator with husbands and wives and families who were having serious problems. On that basis (if I remember correctly) I was actually invited to join that social group. Again, if I remember correctly, I didn't ask to join the group. Do I see myself as one who supports others in a professional way? Well, yes, I guess I do. But I'm afraid I'm much, much more of a patient than a professional.

Absolutely agreed. But it could be even more agreed if we get past self-acceptance and make serious inroads on how those on the outside see us. I apologize if you're offended by "leprosy" or "freaks." But I honestly do feel that both of those words don't overstate the case when it comes to how people with head problems are viewed by others, even if we actually mount up to one quarter of the population over a lifetime.

Yes. Mutual support. Yes. We are all human. No question at all. But the attitudes of others who aren't otherwise affected by our situation is, to me, quite important and something that should be worked on and not ignored. Take care!

Just a comment..there have been numerous books written..people literally have come out of the closet to say they suffer from depression..e.g. the former Govenor of Florida, news people, football players...etc.....right now people are focused in our country on unemployment, lack of money; foreclosures . politics etc. Our plight right now is small compared to some of our fellow Americans who indeed are suffering in a different way.
We have always been behind when it comes to mental illness. You think in the year 2011 we would have progressed but we have not. There continues to be a stigma no matter how hard we fight. However we have each other and we understand each other. For now at this time,that has to be enough. We will get our chance.

Dee

as World mental health day nears (some time in October) It is a great oppotuntiy for people to let others know that mental health effects many people and is not to be feared or looked down on. I should like to hope the media around the world will take this day as an oppotunity to educate the population on this matter.

I personally have no quarms about letting people know I am certified, or that I have a brain but they found nothing in it at my MRI scan! I have a wicked sense of humour and am proud of it, if others do not like it, well thats their problem not mine!

Well yellowted, that would be nice but I don't think we are there yet, if the celebrities got involved then, ofcourse, it could be a reality.

And I actually don't necessarily find fault with that, after all years ago when celebrities were bound to big Big Movie production companies, they hid their personal issues. Anything that was not in keeping with their perfect charector persona carefully designed and polished by the Big Boy Movie Giants, was simply not allowed to be revealed. When I watch the biography channel it is nice to know these people were actually normal human beings with struggles too. Ah, how many women went to bed wearing makeup and nightgowns that could almost be worn out as an evening gown, well, that is the way women looked in the movies, always so perfect.

When we think of how it is now, a slowly emerging awareness, so many years in the making of just that. But even now it does take great courage but to go and watch a star in a movie that in real life struggles reveals more of the movie as just being a work of art, rather than how things need to be for a normal life.

Open Eyes

Yrgec23,
Your thought is not wasted effort, it is a good idea. I have to tell you that when I thought about starting my business and talked about it, I must have heard every reason under the sun why not to do it. Well, I decided to do it anyway and gee,
all those negetive people didn't really recall being negetive. LOL

I do ponder on that thought myself, so your not alone in that. As I struggle with my own issues, I find myself saying under my breath, this is just awful, how could this be, if I ever find my way through this I will make every effort to share that way.

Well, if someone who struggles with a disorder feels that it is not a lepracy or creepy crawly, what that means to me and that person has become aware that, no, to them it is not a lepracy. But to others if it was revealed it may be something to fear simply because we often fear the unknown. And as we can truely see on many levels, the only way to change that is to make an unknown "KNOWN".

When you presented a thread about posting, some people said that they don't post to others here that have issues they do not understand, I would think that to be evidence of a kind of FEAR. And to be honest Ygrec23, when I read your input and finally looked at your about me page, I don't know what your disorder really means to you. And what I have learned is in spite of what it is, I find your imput kind, thoughtful, and very supportive. And that tells me, "TRY" with my own issue.

I had posted in another thread today that presented the idea of thinking about overcoming a mental challenge as a positive and a valuable part of someone.
My own therapist battles depression, and it has been a plus because he can hear my struggle, truely sympathize with it and help guide me through it. So overcoming can be a lot more than someone with this and that it can become an asset and help to take an unknown to a known.

Open Eyes

Well, Open Eyes, to be honest, I don't necessarily think it's fear that causes people not to post about issues they don't understand. I've refrained, many times, from posting in threads dedicated in one way or another to problems I haven't suffered from myself. Right or wrong, I kind of felt that I wouldn't be able to do justice to those people's problems. And, I'll tell you, that's probably one of the main reasons I started the thread about posting philosophies. In other words, how do other people approach the issue of, say, depression, when they themselves are schizophrenic? Or dealing with Bipolar when one has PTSD? I don't really understand what I have myself, let alone all these other kinds of problems. And I'd prefer not to step on people's toes. Not to hurt them in any way. But at the same time I HATE to write those pat-on-the-head one-liners that might as well be a Hallmark card! So I'm still working on that one, to see what if anything I can do.

Yes indeed. If you've got lemons, make lemonade. Oh yes. And it's true. I'm not denying it. One gets insights through all kinds of painful experiences that can be helpful throughout life. Yeah. Well, sometimes that's enough and sometimes that's not enough, if you know what I mean. So sometimes, like right this minute, you go to bed (I go to bed) and turn out the lights and hope that tomorrow will be better. And sometimes it is! Take care.

Well, your right about not stepping on someones toes by assuming you know their personal need and even struggle. And I do agree with you about that hallmark post, but at the very least it can provide simple acknowledgement of a struggle. And I know for myself, when I first came to PC and was really struggling, that hug or seeing my name in a virtual hug symbol, meant a real lot to me.

Whenever I address someone else with a different issue I basically talk about the struggle itself and I explain that I too struggle and here is how I have come to a healing process. And I am honest about the fact that I may not know the specifics of how their personal issue presents a specific difficulty for them. However if I had access to a book that was full of different people and how they deal with their disorders and what it means to them personally, perhaps I could assist that person better. When addressing another person who is suffering, VALIDATION is a very important part of healing.

And come to think of it Ygrec23, you may not know on a personal level what I deal with as I don't really know what you deal with on a personal level but I really enjoy our interactions and you have helped me. And I feel I have recognized you in ways that have encouraged you as well.

If anything the one area that can prove to be very helpful is giving another person who struggles, RESPECT. And if we are more informed of that personal struggle, that may help us to do that. And it has been proven as we have become more aware of AIDs and other issues that have plagued mankind, knowledge and knowing how those individuals struggle and feel, well, we can find better ways to respect them and support them.

Open Eyes

I see. Well, I'm not a huggy or kissy person, or even hot on any kind of intimacy. It all goes back to you know when. So I guess I react negatively to that kind of thing and don't realize other people would find it positive.

What is validation, really? I mean, all pain is valid, no? Why do people need to be validated?

Yes you have, and I thank you for it.

I agree absolutely with regard to respect. All too many of us feel like some kind of subhuman separate species.

Take care!

Ygrec23 asks What is validation, really? I mean, all pain is valid, no? Why do people need to be validated?

Validation is very important to some people Ygrec23, because often family members or husbands or co-workers etc. do not believe, do not listen, cant believe in ones issue. Often victims of abuse are not believed or the real struggle is invalidated in many ways.

I can say myself that there were many times in my life that my feelings and issues were extremely invalidated and , yes, I could tell many stories where you would agree. So, to have someone say, "I believe you" and "Yes I understand what you experienced actually happened, was real and deeply disturbed you", is very important.

If you presented that you needed to overcome the abuse put upon you from your mother and everyone either would not believe that happened or did not think it should have effected you profoundly and instead accused you, it was your fault, you were weak, get over it, etc. That is in no way validating that what happened to you was wrong and deeply effected you and that you do need assitance in healing from that.

Even in PC, when someone asks a question or presents a post in here and that person is truely trying to make an effort and someone else posts a negetive reaction, or even a post that my be hurtful or overly judgemental and does not see the initial struggle and effort? I will see the one whom I know is probably suffering and may even be questioning their effort or if it was that they were bad or is it something about their illness, and I will validate their concern and that someone else was not nice. I will also validate someone who sees a wrong and makes an effort to correct that wrong, because I know that is difficult as well.

Sometimes people address an issue and have a lot of self doubt because of the issue, and if that is validated and expressed as a common occurance,don't be worried, I believe you, but here is what you can do.
That is validating a feeling and that yes we can feel that way.

I suppose that when Laing took off all his clothes and sat next to the young woman in that padded cell who was also naked and rocking, his doing that, validated her and so she spoke.

It is not just a recognition of an issue or experience, it is also validating the feelings and struggles of the individual that is so very important for a healing process to take place.

Open Eyes

I know this might be off topic, but it does relate to your above question in a private way to me.

I have my own little farm and I worked really hard to make it special and it did take years of hard work, many things I did on my own, things many women would not consider doing, but I did those things.

I have always been a kind person and mindful of others. I have experienced so many different intrusions and actions of disrespect and even negligence from many of my neighbors that have surprised me, damaged my way of life, and expressed total disregard for my private farm and my boundaries and efforts with training my animals.
And later today they are having a neighborhood picnic and are all getting together and I was invited but I am not going to go and be around these people who really went out of their way to not be nice to me and even invalidate me in ways I could not have imagined.

There is a part of me that would like to go and stand up and point out each person and how they picked on my daughter on the bus for no reason, told others not to be nice to her, did not contain their dogs even after several requests they do so, hear that I was struggling with an alcoholic husband and convinced parents to withdraw their children from my troop of brownies, shun me as I was now not worthy, shoot off fireworks right next to my horses that I work so hard on and train even though it is illegal and they know dangerous and scares my horses and is such a potential for danger, a neighbor the decides to pull apart a stone wall that is on my propery that I have built and he doesn't like, call me a narcissist because I am deeply hurt and weary of socializing and I am depressed and isolating, and even sneaking onto my property and hitting one of my ponies and taking a young thouroughbred mare and putting it into a small paddock with a pony and I come home to a bloody mess, there was no way those animals could have gotten in together by themselves, cutting off the long tails of three ponies up to the end of the tail bone so their tails look terrible,
pushing big rocks into a stream that I spent a whole summer digging out that was over grown and flooding my back land., tearing down no trespassing signs and throwing alcoholic beverage containers onto my land. Those are a few of some not very nice experiences I have been through.

And if I did go and stand up and talk about each person and how that person disrespected and hurt me and how I struggle now, some one else would stand with me and "VALIDATE ALL THAT I HAD SAID, THAT I HAVE EVERY REASON TO FEEL HURT, AND THAT, YES, MY ANIMALS WERE DAMAGED AND I AM VERY HURT AND I NEVER DESERVED ANY OF WHAT I EXPERIENCED FROM ANY OF THEM.

Sorry Ygrec23, but I am not looking forward to tonite and hearing those people laugh and joke and have fun right next to me. And I know I will be alone, do I stay? or do I run like I had so many times in my past?. I don't know to be honest. But it would be nice if one person VALIDATED ME AND STOOD WITH ME IN FRONT OF THEM.

Validation can mean so very much. I hope I am not taking your thread off track, but you did ask a question and I just could not help but answer that one question.

And to be honest, today I feel like Too many triggers in one day for me.

Open Eyes

double dipping re a book. i was in the self help dept. of barnes and noble some years ago. my eye spotted an unusual title, a boy called "it" by david peltzer. he was severely abused as a child. his mother was schiz. this book and others following (i purchased all) of his life during time periods all eventually ended up on the NY times best seller list.
so catchy titles do help, imo.

i might add that i choose not to allow my MI define me. but that's just me. others here still struggle in spite of help. i feel that taking care of themselves in the most important thing they can do as i posted earlier.

Perhaps I'm digressing within the thread, but this vignette came to me and it may be applicable here.

I tend to become lost in a certain city here in South Florida. (I insist the town street layouts were done by drunken monkeys.) However, I became lost going through the city and ended up over on the beach. This was just as GPS were becoming available; I did not yet own one.

I drove around a bit and realized I was just too disoriented to figure it out on my own, plus the later I became for my appointment, the stress negated any real ability to solve this on my own.

Alas! I saw a police car which had stopped a car going in the opposite direction from me. I didn't see any way to pull in behind the cop, so I pulled into the car lot or parking lot about 20 feet behind and walked up to the cop car. I did know enough to not stand at his window... I walked past his car on the sidewalk to the front bumper and stood, waiting for him to look up.

He jumped of course, that someone could do that and he not be aware. He got out of his car and began yelling at me. I was more filled with anxiety of being lost than of him, btw. After a little rant of his I said, " I'm sorry officer, but I have a panic disorder and I'm lost."

His entire demeanor changed. Obviously he had had sensitivity training and it kicked in beautifully. He calmed me down, asked where my car was, said to go back to it and he'd come back and help. Which he did.

Awareness and education is a good thing. If I hadn't had help by a pain and stress management psychologist, even though I had education about what one should do in this situation, I would not have been able to control my anxiety enough to not yell and scream and react out of panic at the officer as well. His education about what people need --read validation-- as well as the tools to be able to provide for that need, really made this a situation that had a good outcome.

I'm hoping that afterwards he reminded himself of his rant at me, and that in the future his new sensitivity training would kick in faster?

Hope this isn't off topic.

Good example JD of awareness and what that might mean. When I think of your original question Ygrec23 and how I feel today to the depths of me and that so many times in my life I have been so invalidated and I can now see that I have struggled with PTSD in many ways for many years just not knowing what it truely was.

When I think about your initial question, what I really think about is that my neighbors are very ignorant and no matter what I do, go, stay away, they are not truely going to understand how I feel. And even if I did go and stand up, they could very easily join together and defend their ignorance and deem me crazy in someway. It could end up very much like that school bus so many years ago where I would climb those steps and into an experience of watching a small boy who had a psychological disablity endure being picked on and verbally abused the whole way to school. I had no way of understanding the cruelty of that situation and I was truely frightened in so many ways. And how I had to endure the backlash of that in terrible ways that will forever be burned into my brain.

And in PC amongst those that struggle with different disorders or issues I hear the whispers of how difficult it is for them at work or in a relationship or dealing with family members and they have been needlessly hurt and they truely did not deserve it. To the depths of me all those messages truely resinate with me as I DO know those emotions and fears and feelings of being separate in a hiding that many will never understand.

But, I can also see what happens when those conditions are brought out in the open where others just may be informed in what it really means and how to think about these people who experience these struggles. Will some or even many continue to ignore that information? Yes I would imagine so and I too have experienced that. However, I also see that when significant voices finally speak and shed some light on that personal struggle and what it means, there can be true VALIDATION for that struggle and can lead to RESPECT AND MINDFULLNESS OF THAT STRUGGLE. And yes Madisgram, "the boy called it" one desire to stand and voice a truth.

And as I think of my desire to be able to go and stand among those people and point out how each of them has disrespected me and truely hurt me and what that means inside my mind and body, unless it was VALIDATED by another presence, it would be a cry in the dark, something all those who suffer know, OUTSIDE PC.

And I do know and have witnessed that when a struggle is presented by an individual that finds the strenth to actually do what I feel I would like to do, there can be an awareness amongst the many and VALIDATION and RESPECT can be accomplished.

So, your question in the beginning of this thread Yrgec23, was a good question a true desire to find a way for a VALIDATION and TRUE RESPECT and REAL SUPPORT to take place.

Open Eyes