Lived Experience Forum

[HenryX]

@StuF 

I'll do that Stu. Now I've committed myself haven't I?

Best Wishes

HenryX

[HenryX]

Hello @AussieRecharger 

and

@Emelia8  , @AussieRecharger , @Meggle  , @Lost9  , @cloudcore , @RICH1 

Reading about your conversation with your brother, @AussieRecharger  reminds me of the effect that leaving work, for “retirement”, has on many older people. When I was in my childhood and teen years, it was quite common, in particular for men, to die about two years after retirement. A lot of work has gone into underwriting and developing that sense of worth, to which you refer in your comment. I guess, in situations like mine, being over 70 yrs, I can remember when everything wasn't better, as the expression “the good old days” seems to imply. Like most situations, it wasn't all better and it wasn't all worse. Even for those younger people among us, it is a self protective mechanism that sometimes makes it difficult to recall negative events in the not so distant past. Consequently, we tend to think that

“the present worst” is worse than “any past worst”.

Because we have tended to live longer in more recent years, we live to an age where we may lose connection with our personal reality. Some people drop the ball sooner, others tend to remain active physically and mentally for longer periods of time. That is the reason for part of the topic of this thread, and the discussion that I hope that it generates, and it is the reason that I am here.

You have observed, that we need to consciously avoid and look past labels, or at the very least, attempt to only use them for constructive purposes. However, another trap, which I think is a variation of the label issue, is to use generalisations, that might appear to include many more people, or other subjects, than the generalised reference may numerically, or in fractional terms, actually be true for.

Your last comment would seem to be a good summary:

Quote: “We are not just a label, a job title, a person who is only useful when they are earning money. The money a person earns is not the usefulness of a person in society.”

which I definitely agree with.

With Best Wishes

@HenryX 

[StuF]

@HenryX 

Haha- indeed!

[AussieRecharger]

Your writing is like poetry @HenryX..., It's always thoughtful and it comes from a time where we did not rush to give our opinion, a carefully crafted thought was worth more than shouting from the soapbox.

Thank you for your reply. the movie fight club will forever be the starting point of my questions around mental health, stigma and what society expects from us vs what we truly need to survive.

[Appleblossom]

@HenryX 

I really appreciate this discussion.

I tried to have similar discussions 5 years ago when I first joined, but it was a little outside the main action of the forum.  So good others are raising similar things.

@Lost9 @Oaktree @StuF @AussieRecharger 

[HenryX]

Hello @Oaktree

and

CC:  @Emelia8  ,  @StuF , @AussieRecharger , @Lost9  , @cloudcore , @Appleblossom , @RICH1 

Your opening sentence regarding our self stigmatisation, which, I think, is an insightful comment:

Quote: “I think some of the stigma does come from ourselves (those with mental health issues) because we are so busy trying to be 'normal'. It makes us hyper aware of our 'abnormality' ("unnormalness" is not a word).”

probably applies to lots of situations, outside the MH realm, as much as within. Our self stigmatisation, as you have inferred, is often a product of trying desperately to not be who we are, but trying to be who we think everyone else is, or wants us to be. I would think it is the difference between those two (where we think we are and where we think that we want to be), where stigma, self and other (internal and external), originates.

Yes, to your reference to:

“the asylum and lobotomy days which weren't so long ago.”

Unfortunately, we have gone from the old system of keeping MI sufferers totally isolated from the general community and for far too long (sometimes even, for life), to a new system of “pit stops” in hospitals and other treatment centres, from where discharge seems to occur far too quickly. I also concur with your comment, regarding the difficulty in addressing issues with relatively short stays in hospital. This seems to be a reflection of the whole 'hospital condition' at the present time, with so-called ramping of ambulances and long ED waiting times. It does appear to be a circular argument. Less time in the hospital means more frequent return admissions, more time being attended to in hospital means more stability for the client/patient and, hopefully, less frequent return admissions.

My thoughts with regard to “labels” is that if a name is not used for a group of presenting symptoms, it would be difficult to align the symptoms with medication. Even now it appears to be difficult to prescribe appropriate medication, in part, I would think, because of overlaps between the symptoms that can present in a number of different “labelled” MI's. If we went with symptoms only, it may complicate the process even more, and the symptoms could then become (pejorative) "labels" in any case. So out of the frying pan into the fire. (there we go with cooking analogies again)

I believe that informed and rational debate, in our discussions here in the forum context, allows our concerns to be aired, and hopefully, there are those who will take note of our discussions. They may even consider whether and how, any of those ideas that we discuss, might be implemented. I hope that this idea is not just “wishful thinking.”

With Best Wishes

@HenryX 

[HenryX]

Hello @Lost9 

and

CC:  @Emelia8  ,  @StuF , @AussieRecharger , @Meggle , @Lost9  , @cloudcore ,

@Appleblossom , @RICH1

I hear what you're saying about the dichotomy between diagnosis and stigma, Lost9. Stigma can be very much fashioned and shaped by perceptions of the members of a family, community, city, nation and, or culture.

It seems to me that the doctor, with whom you were speaking in the 1980's, was responding to the perceptions, that he believed were prevalent in the community, city and possibly country, where you lived at the time. You have said, that you understood that the doctor believed that you would be disadvantaged by a diagnosis of schizophrenia. Remembering that this was toward the end of the time of the transition from institutional treatment of people with MI'nesses to community based treatment, he probably had good reason to believe that his recommendation may cause you the lesser of the two disadvantages. In essence, it is likely that the doctor weighed up the difficulties that you would face against the benefit of the treatments that were available at that time.

I entered “Treatment for schizophrenia in 1980 in Australia” into my browser (Firefox) and found some interesting and informative material from Australia and other countries. You may or may not yet, have accessed this or similar material. It seems that in the '80s there were some developments in the pharmacological treatments available. What are now considered appropriate treatments, may or may not have been available in Australia or other countries at that time. I do hope that the information will be of interest and use to you.

A resource that I have downloaded and intend using for my own future reference is:

“Royal Australian and New Zealand College of Psychiatrists

clinical practice guidelines for the management of schizophrenia and related disorders”

that is available at the following site:

https://www.ranzcp.org/files/resources/college_statements/clinician/cpg/schizophrenia-disorders-cpg....

I admire the way that you have dealt with your knowledge of the circumstances that you faced in your academic and employment endeavours.

Also your comment about how you projected yourself in those endeavours, as described in your statement:

“I was always open with my diagnoses because I wanted to educate people that I am still a person who has a sense of humour, who feels emotions and has interests like a lot of other people. It is by sharing what we have in common, not our differences.....”

by which barriers are likely to be modified and, or removed.

With My Very Best Wishes

@HenryX 

[Gwynn]

I read something the other day about the 'buzzfeedification' of our mental health - that we're asked to identify with our diagnoses to find our people. https://www.theguardian.com/lifeandstyle/2021/jul/29/mental-health-memes-can-they-offer-more-than-co...

[Lost9]

H @HenryX ,

Thank you very much for the article and your reply. I read some of the article and found it very interesting. I agree that my doctor in the 1980's made the best possible decision to treat me in accordance with the perceptions of that period. One of the key considerations such as the presence of hallucinations and insight to realise they are hallucinations is still a factor. In the 1980's I was asked if I heard voices. I said no because I didn't realise that what I heard others did not. My mother pointed out that I did hear voices but since we had no known genetic factors in the family the diagnosis was not made. It was not until I had been diagnosed that two other cousins were diagnosed as schizophrenic as well. In fact one of my cousins committed suicide because he could not receive successful treatment.

I agree with the article that for people experiencing a first episode diagnosis that the first 5 years are " critical" in their treatment. The desire for early intervention is paramount. I was surprised that ECT was still offered. In the 1980's it was offered to me but I declined as the psychiatrist didn't know how it worked on the brain just that it worked. I prefer the idea of directly stimulating the appropriate part of the brain at least. I am glad that peer- delivered therapies are used and the SANE lived experience site is a great resource. Of course pharmaceutical benefits have to be weighed with side effects but this is a personal decision according to what one may tolerate best.  I noted that the role of oestrogen in women may be a factor. I participated in a trial at the Alfred Hospital in Melbourne where this was studied. Unfortunately, I received the placebo so I did not benefit. I have not followed up on the research so I don't know if it is still considered ( post 2014).  Once again, thank you for the article and your reply.

Best wishes,

lost9

[Appleblossom]

Hello @Lost9 

You have a long story and understanding of the issues.

@HenryX I shared a link with the cover of that book about religion to a "friend" who had been involved in coercing and religious spamming.... the ways of the modern world .... sigh.  Still it was good to see it is an issue treated with some seriouslness.

I am also giving that ranzcp link a thorough read. Thanks

Cheers ALL

Apple