Mental Health and the Stigma Shout Campaign

[Karen]

The “Stigma Shout Campaign”

I have been made aware, that several organisations, such as the Mental Health Media, Mind, Rethink and the Institute of Psychiatry, Kings College London have been awarded £18 million pounds from The Big Lottery Fund and Comic Relief to run a programme to allow them to publicly challenge attitudes towards mental illness in England and counter discrimination against people who experience mental ill health.

They are asking for views from people who have or have had a mental health problem and carers of people with mental health problems to guide the development of a major national anti-stigma campaign in England and to create an identity for this programme of work. They need your help now …… So, if you’ve suffered from a mental health problem or you’re a carer of somebody that has, then please take a few minutes to look at the following website and complete the online survey that takes about 10 minutes. http://www.movingpeople.org.uk/

Hopefully, we can help make a difference …..

I really believe that after having a SAH, good mental health is absolutely paramount for recovery and something that’s often overlooked by the medical profession, once we’ve been patched up and discharged. Most of us know that we should feel extremely lucky and grateful for having survived and we are, but often our lives have been completely changed beyond recognition.

For many of us it’s been a life changing experience and there can be many positive changes that we decide to make on how we live the rest of our lives …. However, among the positive changes there can be many problems and challenges faced by somebody that’s had a SAH. They may have been the major wage earner and haven’t been able to return to work, whether it’s through physical or mental disability, such as anxiety or depression, therefore there are major financial worries.

The responsibility of young children to care for whilst you’re recovering…… as a parent of much older children now, I can empathise how difficult that must be.

You may not be able to drive or walk unaided, so you’ve lost your independence and even going to pick up a pint of milk is a huge upheaval and you now have to rely on the help of others.

Loss of contact with friends and family also seems quite common after an event like this, so maybe you are also feeling a little isolated too.

Marital problems can also be experienced.

A loss of confidence is also very common after the SAH.

It’s not unusual for people that have had a SAH to suffer from post-traumatic stress, depression and anxiety …. I’ve suffered both anxiety and depression. Many of us struggle with it, before we decide to get help, as we feel that we should be able to cope and after all, we’re the lucky ones aren’t we, we’ve survived? I hadn’t previously suffered from either of the conditions, until I had the SAH. Mental health problems can affect any one of us, at any age ….. If you’re experiencing problems with coping after the SAH, then please seek the advice of your GP and don’t struggle. Help is out there.

Mental illness can affect anyone at any time. It is very common, and it's possible that you or someone in your family will be affected at some time in your lives.

Here’s a list of some of the mental health conditions that you may recognize.

Alzheimers Disease

Anxiety Disorder

Bipolar Disorder

Childhood Disorders – Mood & Anxiety Disorders, Attention Deficit Disorder (ADD) and Autism.

Depression

Eating Disorders

Manic Depressive Disorder

Obsessive Compulsive Disorder

Panic Disorder

Phobias

Schizophrenia

Substance Abuse

Suicide

Mental Health Media http://www.mhmedia.com/

Mind http://www.mind.org.uk/

Rethink http://www.rethink.org/

Institute of Psychiatry Kings College London http://www.iop.kcl.ac.uk/

[Karen]

Out of interest, who on this website has been treated for post traumatic stress, depression or anxiety since the SAH? It's well documented on the website that I've been treated for depression and anxiety, but am I the only one?

I had a pretty big physical reaction to the anti-depressants that I was given ..... which was Prozac and after 4 days, I decided to try to go it alone, but under the review of my GP, I've managed to tackle it. However, I'm still taking a drug called Propranolol for anxiety/migraines and heart racing ..... the heart racing bit isn't due to the anxiety, it can come on when I'm going off to sleep and feeling totally relaxed...

Looking forward to your replies...

[tennissmithy]

The doctor accepted that I was depressed/ anxious but said that we would see what happened when I either got a diagnosis on 19th February or when I returned to work. I was up and down after the SAH in Sept 2006 but have been much worse the last 2 months.

Changing the subject slightly, my mother has been suffering with depression since June 2006, she broke her arm and lost her confidence, then with me being in hospital that September that was the final straw. She had anti-depressents but then I feel the doctor bought her off them too soon. Now she has decided she wants to do it on her own. Any ideas of what she can do? She forces herself to walk 100 yards down the road each day to get to the shop but even things like cooking- she will only cook certain dinners.

Thanks

Laura

xx

[rince]

It can be quite a stigma (as I'm currently finding out) to be even remotely linked with a mental illness of any sort. I am not ashamed to say that I had some issues with my mental state and still do but until those that try and tar people because of it learn a new lesson it's a fight worth fighting. What is happening now to me is that people are questioning not my ability to do the job but my mental fitness to do it. Suffice to say that these people are not arguing on the same side as I am but those people that know me are amazed that it should be an issue, many more didn't know about my SAH until it was bought up via a "my story" piece I wrote on the Different Strokes website some three years ago which reappeared in an edited format recently.

I know that I was helped a huge amount by those professionals working in mental health and I will never forget that.

Scott

[Skippy]

Hi there

Yes, I was treated for PTS and anxiety. My GP refused to put me on any meds until I'd seen a counsellor. My counsellor, Rick, was brilliant. Within 3 sessions he had straightened out my mind considerably and helped me get things of my chest that I felt I couldn't do without burdening Paul. Don't get me wrong, I still have days when all I feel like doing is crying and I am still so very angry at what happened to me. I'm only angry because of the way it's changed my life and I had no say in it - but that's down to me being a control freak more than anything I think.

Thinking back I now realise that my anxiety was probably more panic attacks and never having had one before it kinda freaked me out.

Hope this helps.

Sami xxx

[Sasbo]

Hi

I was treated for depression and anxiety, both of which still plague me. I take Citalopram for depression which I have been cutting down on as, depressingly(!), they have increased my weight. I got right down to minimum before kicking them completely, weight improved, then the shingles got me and the Doctor advised I go back to full strength for a while as an ongoing effect of shingles is depression - and I have really felt like murdering people over the last couple of weeks so he's right! Anyway, started to cut down again now but if you hear of murder and mayhem Cheshire-way you'll know I cut down too soon!!

I also attended OT once a week prior to second op and will be returning there in the next week or two. The therapists there have been so helpful in my mental/pyschological recovery.

Sami, I totally empathise with the anger thing - you've put into words exactly how I've been feeling for the last few months but couldn't fully understand, so thanks.

Sarah x

[Louise]

In a very small way I was lucky, because of the extent of the SAH, I had to go into rehab hospital where I saw a physiologist every day for a bit then every other day, I continued with this in outpatients too.

I don’t remember what was said at these sessions but I know that when I spoke to people when I got home they were amazed at my laid back attitude about what had all happened to me, so I guess that was due to them.

Although I do find it very hard to sort problems out like everything that’s happened in the last 8 months at times I felt I could have went to see the physiologist then….

I was so up front about telling people that I’d had a physiologist my friend nearly chocked on her food in a restaurant she was trying to tell me to keep my voice down, that’s when I found out about the stigma that was attached……

L.xx

[Karen]

Interesting posts and I think that it's good for people to be as open about mental health as possible, rather than keeping it hidden ...... I'm thinking more about this website and for the members or guests that look in and perhaps wonder why they seem to be the only person suffering from these issues..... I'm not good with my words this morning, but hopefully you'll understand what I mean!

I know what kicked off the anxiety for me and that was the fear of having seizures again ..... especially when I was out alone or driving. A side effect of the anti epilepsy tabs, was the shakes, especially hand tremors ...... and feeling "spaced out" ....... I didn't realise this at the time and I would try my hardest to "feel in control" ..... as when I had the seizures, I would suddenly feel spaced out. It's quite hard to describe, but the more I tried to be in control, the worse the anxiety would get and the hand tremors would go into overdrive. I'm thankful, that I've recently just got past this point and I'm feeling more relaxed.....but that's probably due to the passing time, which is a great healing factor. I've tried to adopt the attitude, that nothing has happened so far, so why should it happen now? and it seems to be working at the minute.

I think that this anxiety, was the catalyst for the depression ..... It stopped me from doing a huge amount of day-to-day stuff, like getting out, even though I forced myself to do it .... The eyesight has also been a major factor, coupled with the dizziness and the threat of seizures, I can see why I felt depressed, even though I tried 100% .....

I don't take it for granted, that the depression won't return .... I'm just grateful to know that I have times when it doesn't feature in my life and that in 2.6 years, I've learned to play everything by ear and that no two weeks are ever the same.

[Louise]

I was scared stiff that I would have a seizure again when I was on my own more so, I didn’t have a side affect to my anti seizure meds but what I did have was the shakes tremors, spaced out when I was coming off them sort of ‘cold turkey’ (isn’t that the word)

Yes I found that as time passed it got easier and if your more relaxed about things then it will be a lot easier.

And I do think that mental health issues aren’t for sweeping under the carpet they should be spoken about not shy away from, from a personal point knowing someone that was (maybe not the right word here) but stuck down by the illness……..

L.xx

[jess]

No i wasn't trated but i certainly did go and try to get coucelling but to no avail got back in touch with me about a year or so after my initial visit and i said forget it i have managed the last yr on my own i will continue to manage and i did and i do. Not only that but have you heard about social services now that poor 18yr old she had her baby took away because she had, had a mental illness, it makes people afraid to seek help how many kids will have to die before they realise there errors. Mind i am better now what it was for me i was frightened of dying and my 4 yr old not remembering me, but as he gets older i get less afraid because at the time he was just over 1 now he is 4 and i really think he wouldn't forget me so therefore my baby wouldn't either.I am glad i went and looked for the help though it made me sort myself out.

At the time i wanted help i wouldn't go anywhere walking on my own with my children now there is no stopping me i go on buses trains even, and even if i ain't got a lot of money on me we can still look around at different things mind not so much in the winter months.LOL

[Guest janey]

good morning everyone

I was diagnosed with pts and depression at the beginning of my probs 2002 I was put on medication at the time, which was also for pain relief.

Last september I was having probs with weeping and wailing, but they wanted to wait as it was early in my recovery, after op in august and they didnt want to up tablets, as i would be on to many. They were waiting for Christmas to come and go. I am glad they did, because I am beginning to heal. My problem is like Karen, the eyesight, makes it very difficult, going out on my own, okay with someone to hang on to, but the double vision does make you feel very vunerable. This the problem I have to overcome, otherwise I will be housebound during the day.

janex

[Slim]

Not being treated for anything

But I definitely feel I've had anxiety and Post Traumatic Stress issues. I've never been treated for depression but feel I've flirted with it in the past.

I've pushed the Doc to refer me to counselling, as I'm still angry etc. I did have a lot of the "Emotional Lability" Wailing, Quick Temper, blabbing what I was thinking etc. This levelled out just about 10/11months unless I'm underpressure.

I again pushed Docs to let me try Prozac as I hoped this would help with the fatigue. Reckon they thought it would help the Lability. No differences, Tried another one that does give great energy but insomnia and bizzare jitteriness /crawling feeling on my skin were side effects so currently trying to get sleeping pattern readjusted and being patient letting things heal at their own pace.

What I did notice was an OT in the early days couldn't cope with my wailing, wanted be to get checked for depression which i did but wasn't. Seemed to me if you get labelled with depression your symptoms are very much attributed to it and not taken as seriously. I think its very unfair.

Slightly Rambling but you know what I mean.

Aine x

[Karen]

Hi Jane .... you have my every sympathy.....

Yes, the eyesight/balance problems are a real issue and can knock your confidence for six ..... it can easily make you feel housebound and I've really had to force myself to do certain things and sometimes, I've felt ****** uncomfortable with doing it. However, I know that if I didn't take myself out of my comfort zone, I wouldn't step outside the door and that would lead on to bigger problems.

I suppose that with Eric working away quite a bit and having a dog, it's forced my hand and in a good way, it's helped, as I've had to do it. I still struggle and it's only in the last couple of weeks that I haven't had to do an internet grocery shop (I still can't do one big shop, but I've broken it down into 2 or 3 visits).....it's a small step and one that many people would take for granted, but it's been a big achievement for me and I'm determined to keep it up.

Eric is going abroad on Wednesday for 2 weeks, it is work related....so, I'm making sure that I can stay on top of things, be a bit more organised and try not to think about it too much or start becoming anxious ....

It is hard trying to keep on top of anxiety and depression if you constantly have physical reminders and it impedes in a big way on your day to day life.

[jess]

Hi there karen i am sure you will be fine on your own just think you can have the remote watch what you want and do what you want you will love it when it is happening but if you feel down at all come on here and we will be happy to help. Jess

[Karen]

Bless you Jess, I will!

I was just talking to Aine and even though Eric works away most weeks, in the last few years it's been mainly within the UK, so driving distance and I've felt more in contact.

I think that I still have a bit of hang up after my first bleed... when it happened, he was working in Dubai and it probably just brings it all back or should I say the feelings of being alone, the mis-diagnosis and also having to cope with kids and trying to look normal and not knowing which way to turn next.

I'm sure that I'll be fine and when he leaves on Wednesday, it will probably be easier just to get on with it ..... and yes, I shall be looking forward to having sole charge of the remote control! Whatever happens, it will be a good test for me...... Thanks xx

[Vivien]

I suffered from depression quite a few years ago and had counselling and group therapy. I am sure that this has helped me post SAH to recognise my feelings more and to deal with them.

I have had touches of anxiety over the past few months, mainly due to insomnia I think.

I do find that my emotions seems to be all over the place, happy one minute, then sad, then angry, like a rollercoaster.

I also seem to blurt things out, I think something and it pops out of my mouth before I realise

[sue]

Hi Karen,

a very big thankyou for bringing "The Stigma Shout" campaign to everyones notice, can I urge everyone who has replied on this thread, who has had any form of mental health problem to fill in the surveys? There is one for carers of people with mental health problems, and one for people who have actually suffered mental health problems in whatever capacity. I have done the carers one and am about to do the other one myself in a while, I have over the years periodically suffered from depression, I think most of it down to circumstances, I was on Citalopram for a long time and since the SAH have asked my GP if I can go back on it, he advised me to get St Johns wort, which I did, although I don't really know if it made any difference!

The stigma attached to mental health issues is vast, the government is urging to get people who suffer in this way back into the work place but because of high media profile when someone who is mentally ill commits a crime, people are reluctant to emply them. Which is an awful shame, most people who suffer from schizophrenia and illnesses like that are more withdrawn and quiet rather than violent. As a family we have learnt first hand about the stigma of mental illness and it breaks your heart, yet it is mostly down to ignorance which is down to lack of education on the subject.

Anyway! thanks to everyone who takes part, it is much appreciated

Love to you all,

Suexx

[Karen]

Hi Sue,

No problems....as you know, I was only too happy to help.....especially as I've had my own mental health problems since the SAH and like your own, down to personal circumstances and the problems that I've faced ..... I've done the online survey, think that it took me less than 5 minutes ......

[stephen]

I worked for The Richmond Fellowship Scotland. I partcipated in a campaign called giveme5 http://www.trfs.org.uk/giveme5. The aims of the campaign are all in the web link above.

We all have right to work.

[sue]

Thanks Stephen,

will definitely be looking that up

Sue

[Guest janey]

thanks Karen

you are very supportive - when i am out i have to look down all the time otherwise i have motion sickness because of the double vision. i am sure eventually i will learn to live with it-its only getting me down, as this time its got worse and i didnt expect that. Its a all a great big learning curve.

As for your problems, it all takes time, and every new step is very scary, on my calendar today was this quote 'you may be disappointed if you fail, but you are doomed if you don't try" im going to use that as my motto! i hope i can offer the support back take care janex

[Shanti]

Hi everyone

Have just completed the questionnaire. My daughter in law is schizophrenic and we've had 16 years of problems with her and issues of safety and proper parenting for my grandson (now 16 years old - thank goodness). My son had to finally leave the family home in Oct last year as his being there had begun to cause more problems than solve them. Unfortunately at the age of 41 he has had to start again with only the clothes he stands up in and ownership of a car. But he'll be fine and is temporarily living with us.

Also I've just been working for a couple of years (on the admin side) for a branch of the NHS in Mental Health and intend to do some voluntary work for them if or when I feel better (perhaps next year). The government funding for the whole mental health area has been disgraceful, especially on what happens to the children and carers of mentally ill patients. Although great strides have been made on treating the mentally ill and there is less stigma attached, apart from the media only focusing on the tragedies that do occur. They never seem to pay much attention to the people who do recover and go on to lead satisfying and worthwhile lives.

With regard to people like us (SAH survivors) I suppose mental health is really about accepting the changes this has brought into our lives and adapting appropriately physically, emotionally and mentally. I can see its going to be a long haul for me personally. And as for INSOMNIA - its driving me nuts. I was downstairs again last night at 4:00 am. Though it isn't because I'm worrying, just can't sleep.

Oh gosh, I'm on a rant. Its my birthday today so I'm entitled!

Got people coming around shortly so I'm off now... (thank goodness I hear you say!)

Love and hugs to everyone

Lesley xx

P.S. Karen: Aine had to reply to my Introduction via email as she couldn't reply on the story board. Any suggestions?

[Karen]

Hi Lesley....

"Happy birthday to you ..... happy birthday to you ..... happy birthday dear Lesley, happy birthday to you!"

Have a great evening!

I've noted your comment about Aine replying ...... hmmm..it's one of the joys of running a website! We'll get it sorted, so many thanks...

[Karen]

Hi Jane,

Snap! I have to walk, looking down too! What a right pair we would look, if we went waltzing off down the street together.....

Long gone are my days of window shopping, I can only head turn at the very minimum or it's like coming off the waltzer at a funfair ...

It's comforting to know that it's just not me.....xx

[Nurianna]

hi!

I feel as if I am battling in many fronts at the same time. On the one hand, the delays in my appointment to get a new scan made. On the other hand I believe I have fallen into PTS, depression and God knows what else.....I have gone back to work but have to make a real effort to concentrate and take things "seriously". Everything seems nowadays so unimportant to me...It´s like if my operation and recovery is the only thing that matters. I wonder if anyone else has experienced this. My family and friends have begun to say I have "changed", that I am not so joyful or happy as "before". I feel guilty and also angry when I hear this and the easiest way for me to tackle it is avoiding people I am close with. They tell me I have to "get on" with my life. But I am not the same person.

Sometimes I just get tired of being "positive" all the time. It seems that´s the only aspect of mine people close to me want to (or can) deal with. I have stopped seeing the man I was going out with because he cannot support me. Don´t blame him personally but I´d rather not be in his company if I am not feeling ok. Some people are useless for these things. As many of us, I was the one carrying the label of being the "strong" one. Well, my recovery comes first. That much I do know. I am grateful for many things. The other day I could eat a pizza! It took me a whole hour but it was something I had been wanting to do since I came out of coma! I also returned yesterday to my art lessons. My right hand is ok. Couldn´t complete the two hour class due to tiredness but made half of it really focusing on what I was doing. Another milestone.....

Lots of love and thanks for the posts

Nurianna