Lived Experience Forum

[suzanne]

We've been having lots of discussions here at SANE about our future strategy. One of the most interesting aspects of that has been working out how to describe what we do. Should be simple, right? Well, no. Turns out it's not. As we've discussed many times here in the Forums, language is a very powerful thing.

We're focusing our work, both in the Help Centre and throughout the wider organisation, towards the more serious end of the mental health/illness continuum. Where anxiety and depression become chronic and undermine our quality of life. Where a diagnosis of bipolar, a personality disorder, schizophrenia and more can quite radically change the course of our lives.

Now we're working on a elevator pitch of sorts where we need to be able to quite succinctly describe the organisation, it's aims and services. We'd love to get a feel for how Forum members react to the following terms:

• Severe mental illness
• Complex mental illness
• Serious mental illness

Do you relate any of these terms? Does it describe your situation? Or do you react negatively to any of them? And importantly, would this description, of helping people with severe/complex or serious mental illness, encourage or deter you from accessing services?

We’d love to get your feedback to add to the broader consultation we’re doing within the MH sector, with carers and others with lived experience.

Thank you

[Mazarita]

@suzanne, personally, if SANE described itself as serving primarily 'severe' mental illness, I probably would feel I don't fall into that category and may feel I didn't really belong here. 'Complex' mental illness is better but maybe a bit diffuse and hard to get a grip on. 'Serious' mental illness seems the best of the three you mention as it implies something beyond temporary conditions, something that may, as a kind of umbrella term, include complex and/or severe forms of MI too. Just off the top of my head and speaking just for myself (treated for MI for 25 years overall, with the bipolar diagnosis for the past 8 of those years).

[Former-Member]

Hi @suzanne From my perspective my mental health issues have been described as complex (personality disorders). I prefer this to the others mentioned above. My GP described them as serious which for me I wasn't as comfortable with.  I think the only time severe is appropriate is when you are dealing with someone like Centrelink. I agree with @Mazarita in that the terminology may discourage some from looking at the resources. I think this will be highly personal.

[Kurra]

Hi @suzanne
My concern with all of your suggestions is the strong possibility that these descriptions may deter people who are at risk of or are developing early signs of MI.

In a time where better communication and discussion about MI ie education is making people more aware of the types of symptoms that could be a sign of a developing MI this could prove quite detrimental. It has become very clear that early intervention can make a huge difference to the course of say a developing MI.

It would in my opinion be remiss to deter troubled folk who may fall in to this category from seeking help from a forum such as SANE which could and I'm sure does lead to actively getting professional assistance as early as possible.

[Former-Member]

Hi @suzanne

Is it really important to differentiate sane from other organisations like beyondblue, blackdog...? It took me a while to find sane - but then it took me a while to figure out and accept that I had a complex MI anyhow. As soon as I wrote my first post here, I realised, this is it, this is where people understand how it is to live with this forever and how to make the best out of life.

ASCA just changed their name to blueknot. I don't know if I would found them as blueknot and they were/are vital in my recovery.

Why be exclusive, just stay SANE and people will figure out themselves "where they belong". And like @Kurra I find we should keep the door open for everyone and give them a chance to find a way to recovery, whatever they're spectrum of MI.

PS I'm no marketing/corporate designer, I know they have a whole different take on things.

PPS Do you get government funding, does it make a difference for that? Then I'd go for complex 😉

[suzanne]

Thank you so much @Mazarita, @Former-Member, @Kurra and @Former-Member for taking the time to respond.  This is exactly the feedback we're after.  

[theaveragejoe]

Dear Suzanne,

I think that none of the terms that you have mentioned here would describe my problems, because these terms tend to look at the state of my mental disorder and describe the symptoms but do nothing to explain the origins of my mental disorder.

I think that the medical world today is in crises and has taken the wrong road, a road  that is taking us all to a dead end. We need to look at the origins of the problem not the symptoms. The medical and professional world looks at the symptoms and provides services with the symptoms in mind. We are people not an illness. In fact, as I said before, there may not be any illness as such but a personality disorder that causes problems for our mind.

I will write something after this to explain my position.

[theaveragejoe]

Here is my position if it makes sense:

One of the psychiatrists that really makes sense to me is Thomas A. Harris and his Transactional analysis.

His book was a best seller in the 70s and 80s titled I am OK – You’re OK

In this books Dr Harris writes about the importance of understanding each person, each human being, as a combination of memories and past recordings (he compares the mind to a tape recorder, though he knows that mind is far more complex than that, and I tend to agree with him).

These memories and past recordings have tremendous impact during childhood. In this sense Dr Harris sees each person as a combination of a child and adult and a parent. The parent recordings are all of those memories that made us act in certain ways as for example: my mother would always ensure that I eat every little bit and that my plate is completely polished at the dinner table. I need to eat everything and really appreciate my food. When this person grows, this person will continue to eat everything in her or his plate at the dinner table, because he or she was conditioned to do so during childhood. We do a lot of things today based on what our parents told us to do and these are old recordings, memories of  our parents telling us what to do.

Each person has an internal struggle between the Parent, Child and Adult personalities. These personalities can exist in harmony or in conflict. The personalities are fairly stable and it takes a lot of effort to change them.

Understanding people in this way has implication for mental disorders as well.

For example, when it comes to Bipolar Disorder, Dr Harris writes:

“In the Manic Depressive personality we frequently find a strong, if not overbearing, Parent, which contains contradictory commands and permissions recorded very early – probably, on the basis of Piaget’s observations, during the first two years of life- when the Adult is the little person is first engaged in working out a system of cause and effect.  At this crucial time if there are overwhelming inconsistencies and contradictions. The child may give up on an intellectual elaboration of the structure of casuality (it doesn’t make sense any way I took at it) and may instead come to regard what happens to him as a matter of time instead of the relationship of objects and events. The manic depressive individual cannot report what precipitated either his high or his low, as was the case in the beginning. His mood is as unpredictable now as it was then, because the punishing and praising parents were unpredictable. Freida  Fromm Reichmann noted that a person who shows manic depressive swings was, as a rule, brought up under the shadow of great inconsistencies. The Adult in the little person could not make sense of the periodic changes in her or his parents, so that the Adult abdicated, leaving with a final attempt at formulating a position: I’m not OK and I am not sure about you. The child did come to recognize, however, that it’s about time for something to happen or all good things must come to an end. Thy did then; they will now; they will always do that.”

It is a pity that we have forgotten about books such as this one and, more alarmingly, that many mental health professionals know nothing about this book. In many ways we are going backwards.

[theaveragejoe]

The reason why it is a problem to use Illness when talking about the mind is because the brain, unlike any other organ, can change itself if it is helped to do so.

A book that is helpful to understand how magical the mind is is this one The Brain That Changes Itself by Dr Norman Doidge.

Blind people will learn to see not with their eyes but with their earing, and this is a fact. ABsolutely true that blind people use special equipment that helps them to sense sound waves. With practice these sound waves, and the help of technology, become images. Much like bats, blind people see via sound waves so too human can learn to see like bats do. After a while, the technology can be taken away becaus the mind is trained to use sound waves to see. 

People that have lost their balance due to horrifc accidents learn to balance and walk again. THis should not be possible but it is because the mind is a magical organ unlike any other organ in the human body.

These are miricles because the mind is magical.

How can we call such a mind Ill? It is clear that mental illness is more of a barrier to recovery rather than a truth. 

Please, do read this book to understand how magical the mind is. 

Can Mental DIsorder be overcome? Absolutely there is no doubt in my mind.

Look at the story of Professor Elin Saks and her story. You can find many of her films and books online.

She has Paranoid Schizophrenia and yet she has learned to control it and can even teach and study. She continues to have hallucinations but she has learned to live and she is happy. She is a Professor of Law in America. Would we cal her Ill? On what grounds? There is nothing wrong with her intelligence she is a Professor.

Similarly, I know many psychiatrists and psychologists with schizophrenia and they cope well. If they have learned to manage why can't we? And if they can learn to function, is it right to use Mental Illness?

These are the questions.

I reject the idea of a mental illness, it is simply a lie. There is no illness only a disorder that can be attended to, mostly a personality disorder. That is my opinion.

It is like genes abd genetics that can be turned on and off in the environment: so too the mind can adjust itself in the right environment. That is why this cannot be an illness. If it was an illness we would not have any direct control. But while controlling the mind is far from easy, especially under our regimental ideology of illness, it can be done. Many people have done it. 

But can we control cancer as we can control our mind? No because the mind is far too complex to be just an organ. There is consciousness, the spirit, emotions and things of which we know nothing about. Yet, people of science go around as if they knew everything. THis is the most infuriating of all things. Science is not that way but somehow we have distorted it. Science is never fixed but a constant search of r answers, answers that become more and more complex. Yet we have ignorant scientists that disotrt science. This is possible due to greed and corruption otherwise it would not be happening.

My opinion of course.

[Former-Member]

Hi @suzanne, i never did like the term 'mental' but out of your three suggestions i can best describe how they make me feel by what images the terms bring to me:

When you say 'Severe mental illness' i picture a distressed person with hallucinating, maybe having a severe acute psychotic episode

When you say 'Serious mental illness' i picture someone suicidal, in ER with tubes, in a life threatening acutely serious situation with a lifelong negative impact.

When you say 'Complex mental illness' i get two images, (1) i picture someone sitting at a table, alone, sad, possibly homeless, paralysed, without hope & forgotten. (2) i see the same person at the same table with a spark in their eye, linked in with multiple two way services that bring them alive though not cured.