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chibam
Senior Contributor

Should We Considder Bridging The Gap?

So I really only belong to the "Lived Experiance" camp. But I guess just for curiosity I just now wandered over to the other distinct branch of the forums: the carers, ect. side, just to see what was going on there. Going there sort of reminded me of one of the biggest problems with mental health & suicide in the world today: the sufferers and those around them each live in their own separate bubbles and there's a really bad communication void between them.

 

So I was thinking, maybe this site could somehow try to bridge that gap? Maybe instead of just having one separate zone for sufferers/lived-experiance people, and another for carers, ect., maybe we could have like a middleground zone where sufferers and carers might be able to communicate and share insight into what we want & need from our standpoint, and what confuses and/or frustrates us about the other camp?

 

I think we need somewhere where we can open those chanels of communication because our currant option of just having to sit and stew in our confusion/frustration isn't good enough, IMO.

12 REPLIES 12

Re: Should We Considder Bridging The Gap?

@chibam  Hi chibam I have schizoaffective disorder and am also a carer of my son2 who has autism, epilepsy and schizophrenia.  I tend to flick between the two forums and sometimes play devil's advocate particularly where I feel a sufferer of mi is being treated somewhat unfairly by his or her carer.  I think your idea has merit. greenpeax

Re: Should We Considder Bridging The Gap?

I agree @chibam 

Smiley Happy

Too much false polarising of issues can arise from this dulaity. Like Good and Bad.  Plenty of Carers have plenty of Lived Experience and Plenty with mental illness have cared about others.

 

Re: Should We Considder Bridging The Gap?

@chibam  this is a really good idea I have wandered over to the “other side” if you will and it feels like a completely different place! I always feel very mixed when I read the things on the family/friends/careers section on the one hand I see people looking to genuinely support distressed loved ones and trying their best to find their way through some really difficult stuff but then I am always reminded that there is a huge gap as you mentioned with the understanding of each other’s perspective. 

 

I actually had a similar conversation with my mother recently about how she still didn’t even understand my diagnoses and my issues even after all this time and how I felt she didn’t really want to understand. Her response was that 1. She and careers are not really included much in the treatment process or appointments and are hardly given explanations by professionals as to what is happening. And 2. That because it isn’t “normal/rational” (her words not mine) that people tend to give up trying because it just never makes sense and you can’t get your head around it. And it is uncomfortable to try and figure it out and that things that are not normal are naturally something that makes people want to avoid them. 

 

Now that was her experience based on living with me but it reminded me of one thing which we all have in common but also seems to be dividing us is that everyone is scared of the situation. Family is scared of how “unpredictable/abnormal” it is and we are scared of how our minds are “turning against us”. But those are different kind of fears and the solutions to reducing those fears are going to be different and I wonder if that is one place some of the misunderstanding comes from like thinking we are trying to fix the same thing but actually we are working on 2 different projects if that makes any sense. 

 

I really do think have a space we could communicate to each other would be great to help us understand each other’s perspectives. Sorry my response is so long but a very good topic. 

Re: Should We Considder Bridging The Gap?

Hi @Eden1919,

 

Yes, I can relate to a lot of what you say. I often think that one of the big problems is that people start off assuming that the other side must be "wrong" in their stance, and decide from the very beginning that they won't/can't acknowledge any justifications the other person offers for their stance. So all they can do is just throw up their arms and say the other person must be irrational/wrong.

 

I've often found that people seem to have already made up their mind about things before the discussion's even begun. So what's the point of giving yourself an anurism trying to justify yourself to someone who won't listen?

 

But I also think that there's barriers created by the real-life associations a lot of people have with some of these people. People don't want to listen to their family members a lot of the time, because of the history there, but they may be more inclined to listen to a complete stranger who is in the exact same plight. So that's one reason why I think such a "middleground" forum might be beneficial for people.

 


@Eden1919 wrote:

Now that was her experience based on living with me but it reminded me of one thing which we all have in common but also seems to be dividing us is that everyone is scared of the situation. Family is scared of how “unpredictable/abnormal” it is and we are scared of how our minds are “turning against us”. But those are different kind of fears and the solutions to reducing those fears are going to be different and I wonder if that is one place some of the misunderstanding comes from like thinking we are trying to fix the same thing but actually we are working on 2 different projects if that makes any sense. 


There's a truth to that, but I think that also in many other cases the problem is that we are working towards 2 differant ends, and I think that in many ways, the associated fear you mention is that the other team will win and we will lose; which is a terrifying prospect when that losing has a lifetime's worth of implications.

 


@Eden1919 wrote:

Sorry my response is so long but a very good topic. 


No problem. 🙂 It was very enlightening!

Re: Should We Considder Bridging The Gap?

@chibam 

I have noticed the carer forum is in many ways reflective of care givers who are not coping so well and as they do learn and cope better they tend to not post so much, there are a few that stay a bit longer to offer support to others.  

 

I personally found that once I made the effort to understand what my husband was dealing with and how to respond appropriately, life changed for the better for both of us. Coming to the forum was about learning how to do this better, a lot of this came from those with LE. I had/ still have no intention of ever leaving Mr Darcy to have to deal with his mental health issues on his own (or any other health issue he may have).

 

 It is well documented that when people have appropriate support they do manage better and I am sure this is the case for other aspects of health and wellbeing too and communication is one of the keys. 

 

I occasionally pop over to the LE side, mainly in the social threads (which I feel are ideal "middle ground" material).

 

Re: Should We Considder Bridging The Gap?

Had to smile @greenpea   @Appleblossom 

As a carer I try not to be bossy but to rather give gentle encouragement and support  as a partner in a manner I would appreciate if I was the patient but often check in with Mr to ensure that he is comfortable with the level of care I provide and to let me know if I can do things better.

 

 

Re: Should We Considder Bridging The Gap?

@Eden1919 @Former-Member @greenpea 

Smiley Happy

@chibamI think you touched on a key point with the fear of a win/lose situation betweeen 2 close people or family members where a MH issue is present.  It may not always be possible, but seems going for that win/win situation is best when people's lives influence each other.  Anyway that is what I have strived for.

Re: Should We Considder Bridging The Gap?


@Appleblossom wrote:

@Eden1919 @Former-Member @greenpea 

Smiley Happy

@chibamI think you touched on a key point with the fear of a win/lose situation betweeen 2 close people or family members where a MH issue is present.  It may not always be possible, but seems going for that win/win situation is best when people's lives influence each other.  Anyway that is what I have strived for.


@Appleblossom  I can relate very much. I've always loathed the thought of my happy ending coming at the significant expense of others. In fact, I know that I can't possibly have a happy ending under such circumstances, because my happy ending is the one where my impact on the world is to make others happy.

 

But I often worry about the amount of time I may have squandered hopelessly searching for a mutually satisfying resolution that is, in reality, impossible.

 

One of the staggerring lessons I've learned over the past few months is that many people actually want to be miserable. I just can't wrap my head around that. And I can't begin to imagine how I might ever navigate such an incomprehensible landscape.

Re: Should We Considder Bridging The Gap?

@chibam 

Smiley Happy

Yes some people do seem to enjoy spruiking their misery.  I dont like that very much as I have witnessed a lot of very genuine NEED.

 

Because of my childhood and parents serious MI diagnoses, I was never secure in pushing my way or my ideas until last few years. Now I believe I put far too much time and energy into pleasing others.  It took a long time for me to face up to the negative aspects of being a people pleaser. It was simply essential for my survival. By the time I joined this forum I was challenging that for the first time.  I turned 60 this year and am less naive and am up to date with news etc so feeling able to be selective about interactions and friendships, rather than force myself into the square holes expected by others, workwise, family or socially.  For the first time I am able to talk about my needs and requests.  Mind you, I dont always get them, but I am at least able to articulate them.  Slow learner in some ways.

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