to think that mental illness does not have a loud enough 'voice'?

(53 Posts)
Foxyspook Thu 17-Nov-16 12:07:48

I don't want to turn this into a denigration of any other illness societies but...

www.theguardian.com/commentisfree/2015/nov/03/10-steps-to-mental-health-equality?CMP=share_btn_fb

Cancer has always had a very robust charitable network, research money, and lobbying power.

Alzheimers (since the time my mother got diagnosed 10 years' ago) has come on in leaps and bounds. Still has a small research budget compared to cancer but I expect this will improve. And Alzheimers Society is a constant protester on the news - which is great

But, I have suffered from very severe and enduring mental illness since the age of 9. I am now 50 in a couple of weeks. I would not say the drugs have improved much in that time - those with psychosis suffer horrible side effects from the drugs to suppress symptoms and stabilise mood.

The care in the community is being cut back to the bare bones and in patient care is of poor quality and only for emergencies (and even then in the time I have been ill - the definition of emergency has changed considerably).

Unless we are lucky - usually with our family backgrounds or with some remission times at crucial points of our development, we operate at the margins of society.

I understand why I don't protest - because my health is extremely inconsistent and I am sure it is the same for most others with schizophrenia or bipolar or any of the more incapacitating and incurable mental illnesses, but surely the charities - eg. Mind could get our position heard at a higher volume?

gamerchick Thu 17-Nov-16 12:14:41

Yeah I agree. It's quite a lonely place for sufferers and their carers. There's such a stigma attached to it also. I've had people cross the road to avoid me in case I talk about the young lady I care for who is very poorly. Even removing some of the stigma and whatnot would be a start.

Babyroobs Thu 17-Nov-16 12:14:49

YANBU. I have 2 friends who have taken their own lives in recent years, both didn't receive the help they needed.

Foxyspook Thu 17-Nov-16 12:35:38

Maybe I am addressing this to the wrong audience, but it is a genuine question, I don't understand how this inequality can exist and the charitable organisations seem so useless at lobbying for change.

Is it again a question of money? That Mind, as the general charity for mental illness, is poorer than other charities? Or is it just ineffective?

Foxyspook Thu 17-Nov-16 13:02:44

It doesn't get much reaction on here either, thanks for those that have.

roundtable Thu 17-Nov-16 13:06:38

Yanbu

It's a massive issue that's not got enough funding or research at all.

gamerchick Thu 17-Nov-16 13:10:29

Well I'm not sure what answers you're wanting. We both agreed with you that it is indeed woefull but they weren't the right answers confused

It's always down to money. There just isn't any and so many people don't 'get' mental illness thinking a person should just pull themselves together they're less likely to put their hands in their pockets and without money, charities can't put out ads or awareness in order to generate money. It's not as if the government give a stuff.

Batteriesallgone Thu 17-Nov-16 13:12:06

I don't protest because I don't want to break my cover. I am really quite ill but only people who have lived with me would know. I imagine there are an awful lot of sufferers like me, keeping quiet, in a way you can't with a visible physical illness.

ChangingNamesAgain Thu 17-Nov-16 13:12:41

Yes mh problems don't habe a loud enough voice. Bit that's true of other disabilities also, especially developmental disorders due to the stigma attached, pain conditions, cfs, immune disorders etc

Foxyspook Thu 17-Nov-16 13:15:18

gamerchick, I wasn't attacking you in anyway. I just wanted a discussion.

It occurred to me that perhaps a lot of Mind's money is spent - I know it is - running support groups to help the ill, but I still don't think they have enough lobbying power.

gamerchick Thu 17-Nov-16 13:21:28

No I know I wasn't feeling attacked I just didn't know how to answer flowers

It would be nice to see a huge drive for awareness first of all and get some funding running. There's been an alarming increase of cliff suicides around here of late, it's a scary place to be in when you're affected. sad

joangray38 Thu 17-Nov-16 13:49:53

It's not just mental health, I used to walk past 2 charity offices on the way home from uni- sickle cell and a cancer related charity. Sickle cell was in a run down building, very little funding, cancer one glass front, several inspirational quotes , very pushy and successful funding. I have a progressive spinal disease and Donal injury there is no help for that. Certain illnesses seem to attract money/ interest. Everyone says they know someone with cancer, they probably know someone with mh issues as well but they, for various reasons just don't say so. Then the argument descends into which charity/ illness is the most deserving etc. It's a cut throat big business

joangray38 Thu 17-Nov-16 13:50:33

Spinal not donal

Foxyspook Thu 17-Nov-16 13:56:44

I agree it is not just mental health, Joangrey38, and I know there are some more popular causes. I am very glad alzheimers has made the news so much. But that is what caused me to think about it - hearing the news this morning.

Mind has so much to protest about and I just don't hear them popping up very much. I know they are a good support agency, and they have their work cut out. I just wish they were a bit more political.

Anyway, this is probably why a lot of people with MI can't protest - having been on AIBU for too long, I feel like running away and hiding!

Foxyloxy1plus1 Thu 17-Nov-16 13:59:13

The trouble with mental health is that you can't see it and people do try to soldier on as well. No matter what people say, there's a stigma attached to admitting that you have mental health problems, which is why so many try to carry on without mentioning it to employers, family etc. It was indirectly responsible for me losing my job because I did mention it and my card was marked from then on.

ChangingNamesAgain Thu 17-Nov-16 14:04:55

But op all of the disabilities I listed are invisible also- and they carry the same stigma. If someone has cfs or pain condition then they are lazy, if they have autoimmune disorder they are a faker, if someone's child has asd/pda/adhd/spd etc then you are a bad parent and it's socially acceptable for people to claim these are made up excuses for not disciplining your child.

helpimitchy Thu 17-Nov-16 14:05:18

My job is going down the toilet as well due to me admitting that I'm mentally ill and struggling. I'm being pushed out. I don't feel like protesting or shouting about it because I don't have the strength. These things have to be kept secret apparently sad

HarleyQuinzel Thu 17-Nov-16 14:26:07

Absolutely changing I know someone who had CFS and he had a very hard time with family/doctors/work not being understanding. He was told on several occasions it was all in the mind.

I don't think many people who haven't suffered from MI can really understand, especially as no one talks about it. Like you OP I've had issues from a young age and no one in my life except my DP and dad would know.

I guess it's partly my own fault for not talking about it, but why don't I? I wouldn't have any reservations talking about a physical illness. I don't know why there's such a stigma attached to it.

Foxyspook Thu 17-Nov-16 14:44:57

My friends know now, but it has taken a long time for me to feel secure enough. As far as publicly in a protesting kind of way, outing myself, I would not want to for a number of reasons. Which is why, and I know I keep repeating this, we need an organisation that is shouting very loudly!

Graphista Thu 17-Nov-16 14:46:21

I've several mh conditions (few people I know with mental illness experience just one. There's usually additional depression and anxiety for starters.

In my opinion there's several reasons.

1 it's STILL very much seen as the sufferers 'fault'. I've even had the people supposedly treating/supporting coming out with 'pull yourself together', 'you're not trying hard enough' type comments.

2 the sufferers themselves don't have the mental strength or in the case of severe mental illness the ability to advocate for themselves let alone protest/lobby for better.

3 those caring for them are exhausted just by caring for them.

4 the stigma - which doesn't just apply to the sufferer, my mother won't tell people that she has a mentally ill daughter even though I am now very open about it.

5 notoriously difficult to treat.

With poor 'results'. Most conditions are life long with marked improvement being the best possible outcome. Not only are the illnesses invisible - so are the 'cures' because the 'cure' is normality.

The brain and brain chemicals are the most individualised areas of biochemistry. You never get 2 people suffering mental illness in an identical way.

6 the nature of most mental illnesses make the sufferer behave in ways which as comparison to 'normals' makes them

Defensive
Loud
'Odd'
Aggressive
'Awkward'

7 have you noticed that the physical illnesses which also get treated poorly - cfs, Alzheimer's, pain conditions, immune disorders - have elements similar or seen as similar to mental illness? Ie people think there's something the sufferer could/should be doing to help themselves?

It's shit and getting worse. This govt certainly isn't sympathetic, the main media prejudice people against the mentally ill by only reporting when there's been violence/negative behaviour. No public figures want to take it on as a cause unless it affects them directly I think because of the stigma affecting their career and because it's an 'unsympathetic' set of illnesses.

MsHooliesCardigan Thu 17-Nov-16 14:52:33

I have worked in mental health for a long time and have also had serious MH problems myself. There have been a number of large scale campaigns against stigma- There is currently one called 'Time for Change'. It was funded by Mind and lottery money and some other organisations. I've seen some of their adverts on buses.
People are scared of mental illness and it doesn't tug at people's heartstrings like sick children or starving children in war torn countries or badly abused animals.
I think that there is more acceptance now of illnesses like depression, anxiety and OCD but the majority of the population would probably feel fearful of 'a schizophrenic' because the only time schizophrenia ever features in the news is when a sufferer is violent.
I used to work in a team for young people with psychosis and ran the carers group which mostly consisted of mothers. About 70% of our patients were from BME backgrounds where there tends to be an even worse stigma than here e.g. In certain African countries, many men would not marry a woman who had been psychotic.
It was so traumatic when these people's children were admitted to hospital, particularly if they were sectioned. And nearly all of them said that they couldn't get support from friends and family because they didn't want them to know that their child was in a psychiatric ward. So many of them said that, if their child had cancer or any physical health problem, they would be deluged with support but, at such a low point in their lives, they had to hide what was happening.
I have noticed a gradual change in attitude over the years but it's a chipping away rather than a revolution.
The Sun were absolutely vilified by the public when they published their Frank Bruno headline and had to apologise. That wouldn't have happened 10 years earlier.
But I agree there is a long way to go.

NightTerrier Thu 17-Nov-16 15:07:28

I also suffer from a severe lifelong MI as well as the social anxiety and depression that also goes with it.

Has anyone else found that psychosis has a massive stigma attached to it? People can talk about anxiety and depression and it's not too uncomfortable. They're probably the most common problems though and most people can relate to feeling down or anxious, even if they've never been diagnosed with a MI. Still, there isn't much understanding and I agree that there are a lot of people who think that people can just pull themselves together and that it's a matter of thinking positively. hmm

Try Telling someone that you hear voices, or about delusions and see how that goes down. grin

The drugs have really crappy side effects that can be debilitating. Talking of which... I claim DLA (dreading claiming PIP) and don't tell anyone about this. Only DH and my parents know.

The attitude towards people with disabilities has really gone downhill since the Tories took over. I'm sometimes shocked by what people say about those who claim PIP. PIP was meant to replace DLA as an in work benefit, but now people with MI are denied it if they work even part time, because they are well enough to work. Maybe that extra incomes helps them do/buy things that keeps them well well enough to work?

It's frightening to be honest, but it's comforting that other people understand.

Graphista Thu 17-Nov-16 15:21:57

Yes there's even campaigns but they're nowhere near as prolific or visible as the constant cancer campaigns.

Night terrier absolutely! At my worst I had hallucinations (not usual with my conditions but I was very ill) I'll admit this I've only told to family, very close friends and the medics treating me. Because yes you get looked at as if you've grown a second head! (Again experienced this from 'professionals' too).

Cultural issues are a problem too definitely, several friends who are non British born seem much less open and have mentioned the way it can affect future relationships within their nationalities' community.

ChangingNamesAgain Thu 17-Nov-16 15:29:28

Night everyone at somepoint will have felt depressed or anxious, those are normal words within our vocab. This means people are more comfortable talking about them but it also means the reality of severe depression or severe anxiety (both can kill) gets dismissed because people relate it to how they once felt a bit down but managed to pull themselves together again.

Where as no one feels 'a bit psychotic', that's not within social vocabulary and while voice hearing is more common than once thought it's still not the norm to many. They find it strange and scarey and don't know what to say. Pp is correct that it is rare for psychotic illnesses to get much media attension unless it's because the sufferer has become violent, whereas most people with psychotic ilionesses are more likely to be a victim of others or to harm themselves.

ChangingNamesAgain Thu 17-Nov-16 15:33:19

Personality disorder is another 'dirty' word to many within daily language. People latch onto narc or anti social being dangerous or bpd dx meaning people are manipulative attension seekers, but they don't hold the awareNess of the huge range within these dx, the comorbids and effects, or the other pds- histrionic, avoidant, dependant etc

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