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Serious? Complex? Severe?

Serious? Complex? Severe?

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

65 replies

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In response to: Serious? Complex? Severe?

Re: Serious? Complex? Severe?

@theaveragejoe,

Chronic compared to a moment's irrationality, fear, depression, elation, depersonalisation, and so on and so forth, etc.

Because, as you say, everyone suffers a mental ailment at some point in their lives.
Some even suffer ongoing. But management is key.
Two people might have the same inability to get going throughout the day, one might be unhappy with this, seek medical assistance. Another might just see it as themselves, as identify with a slower road.
The one that goes to gp might get diagnosed chronic fatigue. The one that doesn't and is ok that way, doesn't.

People go through transitory emotional and identity periods throughout their lives. We need to continue to point this out, and get people to identify with it. The person that had a high fever at 12 and hallucinated they were walking backwards, for example.

If I identify as chronic (rather than complex or severe), it is easier to see the flipside as just being life. Life is getting intermittent back pain. Life is getting fatigued if you push yourself too hard. Life is going getting headaches and drinking water and taking over the counter pain meds. Life is then carrying on.

But when that headache doesn't go away, (like mine doesn't!), and those first point of call meds do zilch, and no rest or water or anything takes it away, you go to gp. I have occipital neuralgia, unrelated to everything else. But occipital neuralgia is considered chronic headache. Headache is no different to one that comes and goes, it isn't really anything special. At times it can be debilitatingly sharp and ouch, but hey, so can being stabbed in the head (I imagine). But what makes it chronic is that it lasted longer than a typical headache, and didn't respond to typical meds. I take meds ongoing to keep it at bay, ergo chronic.

So in answer to your question, chronic mental ilness (it's the mental illness part that applies the stigma, in my mind. I wish we could do away with 'mental'), as opposed to a brief experience that responded to rest, friends, the trigger being removed.
If it can't be shaken with everyday treatments, it becomes chronic. So really this is any mental illness, again it all comes down to management.

Some, like us, don't manage (typically) our malaise. We manage it, but with ongoing treatments (be it mindfulness, medication, psych therapy or counselling, etc). There may be periods of wellness. But we don't take it for granted.

I really assosciate with chronic, personally. Ever since I've been lumped with this headache, it made sense to me. Why deviate from medical standards of definition? Chronic as applied to other ailments would be applied with mental illness if not for it beng mental illness. We get slapped with 'severe' (usually otherwise reserved for cancers or severed limbs or other potentially terminal presentations), or 'complex' (used in other medical conditions as a term to encompass 'did not fit anywhere else'). Serious is never used to my knowledge. Probably a good thing.

I personally would prefer chronic, as it infers there are similar experiences that everyone faces, just more transitory, and it infers management.

If we use neurodiverse, how do people define that they want or need help? Help shouldn't be a dirty word. But it is. That is the stigma. Others don't want to have to get involved in anything other than their own selfish lives. They don't want to listen. They want to know better, they want to tell you 'hey, I too am neurodiverse, just as anyone else. I get depressed. But I don't go moaning about it like you do.'

Placing an 'inclusive' definition won't remove stigma. Visit a parenting board or mother's group. Watch the horrifying judgements fly, if a mum raises her pain at experiencing feelings/thoughts about hurting her child. Or even remove the violence, that she just doesn't have love for her child. Watch others, diagnosed with post-natal depression, point 'witch!!!' "I suffer post natal depression and I can tell you you don't experience that! That is just the awful person you are, showing through! You really shouldn't be a parent!"

So I'm not sure neurodiverse will tackle stigma. It doesn't challenge anyone's prejudice. It just side-steps it.

I love how much everyone feels so strongly about all this. We are being asked, and listened to.

@Former-Member, I perhaps you have a solution as to how everyone will sit happy being labelled neurodiverse though? How do you explain to 'well' people that they are neurodiverse too, but that their experience does not presume another's?

In response to: Serious? Complex? Severe?

Re: Serious? Complex? Severe?

It could, that is a downside.

I would also question though whether anyone having their first one or two episodes would be looking for a forum, unless directed by GP/ family/ friends, OR a feeling that they already identify with their diagnosis, in which case they probably will come here.
Just like someone after a fortnight of headaches, is already googling chronic headache.

In response to: Serious? Complex? Severe?

Re: Serious? Complex? Severe?

@Kurra, I do agree though.

The question was asked before, but not answered. Why are SANE differentiating?
Blueboard was beyond blue, yes?
And a number of other boards were streamlined here?

So those that aren't complex or chronic, but would still relate to experiences here, where do they go??

In response to: Re: Serious? Complex? Severe?

Re: Serious? Complex? Severe?

Hi there @Sehnsucht,

I understand what you are trying to say. You feel that by making sure that we let all people know about our experiences and struggle they may finally see the light and help us, drop the stigma and change.

It hasn't happenedm, unfortunately. That is what the medical model was trying to do to say to the people: hey these people are sick they cannot always help what they say or do so we need to help them and understand them.

There are many problems with this: first of all having a mental disorder does not mean that our intelligence is affected by that disorder, just that our intelligence can become distorted due to symptoms. We can be extremely intelligent; second when there is the mind involved any idea of illness will increase stigma automatically. That is just the way it is.

So that when you write: People go through transitory emotional and identity periods throughout their lives. We need to continue to point this out, and get people to identify with it. The person that had a high fever at 12 and hallucinated they were walking backwards, for example.

It isn't going to happen, unfortunately, Stigma is still strong and still prevents people from living as they should. No one knows about it because it is mostly hidden but we, who suffer with it directly, know that the stigma is there and that it can stop us.

The medical model, the illness word, has done nothing but aggravate the stigma and I agree with Kurra some people will not join here if there is talk of illness or chronic illness or serious illness.

We know that the situation is serious but we need to find words that are friendly enough and do not lead to stigma.

Here is the definition of Neurodiversity: To me, neurodiversity is the idea that neurological differences and disorders like depression, autism, bipolar, schizophrenia and ADHD, to name a few, are the result of normal, natural variation in the human genome. THis is because we have always had depression, schizophrenia, bipolar in our world. These have always been there. If they are there, and evolution has not eradicated them, they serve a function. We need to live with these and treat them not as an illness but as a variation of being for whatever reason this has happen. IN so doing we will reduce the impact of what we call Mental Illness which really is NeuroDiversity.

In response to: Serious? Complex? Severe?

Re: Serious? Complex? Severe?

Thank you @Appleblossom

for the encouragement. I don't have all of the answers but I am searching. I figured out a loong time ago that with mental disorders such as Bipolar there is so much creativity that emerges and so many positive things. If we learn to accept the problems and struggle with them, we can enjoy what is good in life. It is possible to find some happiness, no matter what.

This is a beautiful little parable

A water bearer had two large pots, one hung on each end of a pole which he carried across his neck. One of the pots had a crack in it, and while the other pot was perfect and always delivered a full portion of water.

At the end of the long walk from the stream to the master’s house, the cracked pot always arrived only half full. For two years this went on daily, with the bearer delivering only one and a half pots full of water to his master’s house. Of course, the perfect pot was proud of its accomplishments, fulfilled in the design for which it was made. But the poor cracked pot was ashamed of its own imperfection, and miserable that it was unable to accomplish what it had been made to do.

After two years of enduring this bitter shame, the pot spoke to the water bearer one day by the stream. “I am ashamed of myself and I apologize to you.” “Why?” asked the bearer. “What are you ashamed of?” “I have been able, for these past two years, to deliver only half my load because this crack in my side causes water to leak out all the way back to your master’s house. Because of my flaws, you have to do all of this work, and you don’t get full value from your efforts,” the pot said.

The water bearer felt sorry for the old cracked pot, and in his compassion he said, “As we return to the master’s house, I want you to notice the beautiful flowers along the path.” Indeed, as they went up the hill, the old cracked pot took notice of the sun warming the beautiful wild flowers on the side of the path, and was cheered somewhat. But at the end of the trail, it still felt the old shame because it had leaked out half its load, and so again the pot apologized to the bearer for its failure.

The bearer said to the pot, “Did you not notice that there were flowers only on your side of the path, and not on the other pot’s side? That’s because I have always known about your flaw, and I took advantage of it. I planted flower seeds on your side of the path, and every day while we’ve walked back from the stream, you’ve watered them. For two years I have been able to pick these beautiful flowers to decorate my master’s table. Without you being just the way you are, he would not have this beauty to grace his house.”

Each of us has flaws. We’re all cracked pots. But if we will allow Him, the Lord will use our flaws to grace His Father’s table. In God’s great economy, nothing goes to waste. Don’t be afraid of your flaws. Acknowledge them, and you, too, can bring something beautiful to the Father.

In response to: Serious? Complex? Severe?

Re: Serious? Complex? Severe?

@theaveragejoe,

I love your views. Keep them coming.

Again though, if identifying as neurodiverse, then how do people identify when they're not coping or managing? Not every pot knows their crack is watering flowers. Suicide is a very real thing.

So, is it that you are replacing 'mental' with neurodiverse? So Neurodiverse illness/disorder/differences?

In response to: Serious? Complex? Severe?

Re: Serious? Complex? Severe?

@theaveragejoe, don't mind me, I get it now XD.

Eventually, yes I want that.

That involves a huge shift and collaboration with other ailments. Eventually, one day, this is the aim.
How to get there though.

Of the three (or four) offered, which paves an easier path to neurodiversity? Possibly complex?

In response to: Serious? Complex? Severe?

Re: Serious? Complex? Severe?

@theaveragejoe,

And I don't mean to imply that if people just knew our struggles, then stigma would no longer exist. As like you, I see that this has been tried, and has failed, and more than that, it has great potential to victim blame (it is up to us to share our struggles more, people just still do not understand).

What I meant is that in respect to the options that we were given (serious, severe, complex), is that they are all far more exclusive than chronic. In the context that SANE has asked what word would describe a lifelong or relatively ongoing condition.

SANE wants to differentiate between others that focus on depression, anxiety, eating disorders, for example.

But they need to have an answer as to what defines that difference. And then why highlight the difference. What benefit is to be had from moving a schizoaffective further from movements encouraging change. Or are they suggesting that current movements aren't effecting change. If it's the latter, why are we distancing depression sufferers from change?

Why so many organisations to begin with?

In response to: Serious? Complex? Severe?

Re: Serious? Complex? Severe?

Hi @theaveragejoe

In you post early this morning you talked about someone's chances if the declared having a mental illness say at a job interview.

Just over 11 years ago I applied for a position with a public service agency. In my application I declared that I had bipolar 1. I was granted an interview and took advantage of the last question they usually ask - Do you have anything else you'd like to add. I talked about my bipolar explaining how it could affect me and the effect this could have in the workplace. I also mentioned my treatment as it was at that time and spoke about my regular appointments with my treating professionals.

I was selected as the preferred candidate for the position and sent a letter of offer which I accepted.

I can't say that I've never experienced since I've been with this organisation but the incidences have been few and far between. This has been the same with stigma.

When I have encountered stigma in the workplace I have challenged the person/people involed by calling a spade, a spade.

I have dound being open and honest about my diagnosis has in a small way helped to fight against stifma.

In response to: Serious? Complex? Severe?

Re: Serious? Complex? Severe?

A few words got left out. Some I'm sure tou can work out however the thutd last paragraph should read

I can't say that I've never experienced discrimination since I've been with this organisation. ......
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