Opening Up and Ending Stigma

*DISCLAIMER- I have no medical training and am not a professional or affiliated with any medical professionals, organisations or practises. All the advice I have offered below is anecdotal and comes from personal experience and is not advocated by any mental health professional or personnel. This is advice from one layman to another*

I want to talk about a dirty word beginning with 'V'.
The one that people use against you because having it makes you seem weak, it is used to reduce you to being a lesser person, a coward, also called a pussy.
Not that one!
The other one.. VULNERABILITY.

People are generally afraid to show their vulnerability, especially men.
I suppose it comes from an out outdated fight for survival, the one that we see carried out in the animal kingdom: that premise that if you show weakness you will be used as a scapegoat, easy pickings for prey and outcast from your herd so you, as a weak link, don't slow them down or become unable to provide for or protect them. But we are all vulnerable people: none of us is invincible, most of us have a wide range of emotions and difficult thoughts and feelings of low worth to contend with at some point.
Why is it still so difficult to be honest about it then?

It must come down to living in a culture that shames people to keep them in a position of helplessness. The system of hierarchy would rather see us tear each other down for our differences and weaknesses, than it would see us build one another up and help each other to become the best, strongest people and society we can be.

Luckily we do live in a country that is learning how to better care for more vulnerable people. It is now scientifically proven and therefore generally accepted that by withholding or not processing emotions and neglecting our emotional needs, we can cause ourselves a great deal of stress, which can lead to physical symptoms and illness, such as depression. So it's not just 'all in our heads' after all, hooray for progress! Okay so there is still no firm understanding of how or why some of us are more prone to poor mental health and there is no one distinct method or tonic which can cure or prevent it. It also doesn’t explain other mental health issues but it is a step in the right direction.

But one of the last attitudes to change seems to be our willingness to acknowledge and embrace the fact that talking about mental health issues, being open about it, really does seem to help. The old fashioned method of ‘pulling ones socks up’ and ‘keeping your chin up’surprisingly seemed to have flopped in medical trials!
Sometimes depression does just disappear, but willing yourself or a loved one to 'just snap out of it' won't make it so. It seems to have its own agenda regardless of circumstances. The only thing you can do is to try to learn how to manage it better, keep some level of normality- although of course everyone has a different vision of what ‘normality’ it!

Having a platform with which to speak from, or setting aside time for sharing ideas, experiences and conversing in general, certainly seems to help lift the burden, more so than trying to hide it away somewhere or wilfully denying it.

Talking about illness helps not only the people who are experiencing it, but those around them who want to support them as well as professionals and health workers who are learning all the time the best ways to approach or deal with the problems that poor mental health cause.

There is still so much stigma surrounding mental health issues. I think one of the problems is that the idea of losing our ability to think logically, perhaps of experiencing delusion or our 'reality' being challenged is actually pretty damn terrifying! It is also pretty terrifying to experience although sometimes magical, depending on whatever delusion your illness manifests as.

For sane, stable people, suicide can be such a foreign concept because their instincts to survive have always over ridden any self destructive thoughts, actions or emotional/chemical imbalances.

I think that is why it can be so difficult to 'come out' about suicidal thoughts or attempts, or even admit to having periods of depression.
The only way to really help them to understand is a series of very frank conversations. That or a more colourful, metaphor ridden, anecdote, depending on your ability, conversation style and audience.

Another factor seems to be the outdated ideas we have about types of mental illness. Everyone thinks that you can spot a psychopath by their wild eyes, gnashing teeth and the axe in their hands. They think that schizophrenics mumble to themselves all day long and can often be spotted wandering naked, bar a pink feather boa, doing Elvis impressions at bus stops. But that's enough about Lady Gaga *boom boom*

See, depressed people can be (almost) funny too right!? I don't always sit in my dressing gown, in a darkened room, weeping about my pointless existence (I try to restrict that behaviour to every second Tuesday of the month).

This sort of stereotyping doesn't do any favours of people's ideas about what mental illness does to a person. The terrible truth is that for most it is an annoyingly chaotic, unscheduled, un predictable, jumbled, cluttered existence, (OCD sufferers aside! Bad taste I know, but slightly amusing) with good periods and bad, sometimes lasting for hours, days, weeks, months, even years.

Humour often makes it easier to cope with it all. Plus mental people are seriously funny! (To laugh with, not at!) Those who have been at their most vulnerable, destructive, outrageous, disgusting, lowest ebb can only laugh at themselves. It doesn't mean they don't take it seriously or care about those who are still struggling.
Take above, OCD is actually a really serious illness, in its extreme it can kill. That's not funny at all, it's a miserable existence and very tough to control. But some of the best ways to cope with the worst things is to shrink them down to size, it gives you a sense of power in a way, 'I am bigger than you. You are my illness, not me.' It is refusal to let it consume you, to have all of you.
Humour can dilute a concept, make it a more palatable subject and get people taking about it.

The great benefits of a more open dialogue about any form of madness are that people feel less alone and isolated. They feel less ashamed of something which can be as common as dandruff! They get better access to help, they may feel less exposed and vulnerable when asking for help, it helps families and loved ones to cope better with the difficulties they face in supporting a sick or debilitated person. It means that communities in general can be more inclusive of those with mental health problems. It also means that over all people are better educated when it comes to understanding and recognising mental illness in themselves and others. It also means that those experiencing illness within their closed communities, be it cultural, religious or otherwise, can see that there may be better or optional routes to take, outside of their immediate approach, when it comes to getting better.

The media has a responsibility towards helping lift the stigma of mental health too. David Beckham for example opened up about his OCD tendencies and despite the rubbish jokes it become a good talking point and people seemed to gain a better understanding of the condition and appreciate the spectrum at which it can affect people. It also let people see that an icon who seems to have it all, can still suffer with a condition, a compulsion and neurosis.
But it is precisely people like that, opening up about their mental health problems that makes the subjects more approachable.

On the flipside when John Prescott admitted to have binged and then purged during times of stress he was widely mocked as he is a) male and b) overweight and we just couldn't get past our idea of bulimia or any form of eating disorder being for anyone other than teenage girls and a predominantly female disease.
This sort of shaming and belittling and sheer ignorance shows that we as a society still have a long way to go when it comes to fully understanding and accepting mental health as being as serious, damaging, widespread and common as it really is.

Some other outspoken celebrities who have done eye opening shows or talked extensively about their own mental health problems, as well as exploring others,’ are Stephen Fry, Ruby Wax and Jon Richardson. (All comedians- coincidence?) It feels great to be in such good company!

In my personal experience I have found that when I have taken a deep breath and opened up to others about my mental health issues or experiences with emotional trauma the response has usually been hugely supportive and not only that, people have shared their own experiences with mental health, be it themselves or their loved ones. I have been hugely humbled by those who have admitted their own struggles, their own shame and even shared their own stories of recovery.
On the very rarest of occasions that someone has rejected the very notion of mental health being serious or prevalent in so many I have gently led them to resources which prove otherwise, be it the NHS website or the many charities, organisations or initiatives that exist to de-stigmatise and support those affected by it.

Having said that I have been asked some tricky questions and to that I can only advise that you be as honest as you can be. If 'I don't know,' is all you've got it's fine, you don't have to be a spokesperson for everyone with your condition, you can only speak from your experience or research!

Some of the questions/responses I've had are:

“Oh everyone feels like that/experiences that sometimes!”
Yes they do, but the difference is the severity or regularity in which the symptoms appear, how well (or poorly) I am able to cope with them and how much they prevent me from functioning on a daily basis.
My average day might be 10x your worst ever bad mood. You might fret about not hearing the postman knock when a parcel is expected so you’ll turn the radio off and not hoover until after it’s arrived. I will sit by the front door or on the edge of the sofa and check the peephole every 5 seconds and have half written a letter of complaint to them in my head by the time I opened my eyes this morning and as I wait I panic because I have to open the door and that means being exposed and people might see me and I can feel the sky starting to fall in on me and go into several hours of dizziness, sickness, tight chestedness, trembling and generally feeling as though I might wet myself or embarrass myself or be locked away and banished for all eternity if anyone can see any sign of me not being ‘normal.’ This can lead to comforting rocking, repeating mantras, crying, and generally uses up 50% of my energy resources for the whole day. I currently have to take a small break because writing about it makes me think about it and the whole cycle starts off again.
*Deep breath*

“How can you still feel like you are suffering if you feel numb and don’t care about anything anymore?”
Because I am fighting with myself; to try to feel something, it hurts, it's exhausting and I used to care. I used to be different. I would very much like to feel things and enjoy things and have a nice stable range of recognisable emotions that can be experienced without turning me into an incoherent incapable blob.

"But you have such a strong personality, how can you feel like you've lost your sense of identity?"
It's a bit like wearing a mask, a defence mechanism. I've built up these layers to hide how I am really feeling and instead focussed on how to present myself to others. It’s a way of coping, to look 'normal.' It's exhausting but easier than trying to explain to people that you've lost your mojo and you don't know why or how to get it back. You don't want to be rejected, for people to be put off or treat you differently, so you just keep going and hide how you truly feel. Everyone does it to some extent, puts on a brave face, but this is just a bit more severe, because I have no clue what is happening inside my head and I can't be sure of anything at the moment. So now I don't recognise who I am, the pieces don't match up. It's like being a stranger in your own skin. Everything is distorted and I’m sort of trapped behind a really thick curtain, trying to claw my way out. At least I think I am. I’m not sure what is left of me.

"Why do you have to keep going over the same thing again and again?"
(This was in regards to therapy relating to childhood trauma)
That's the nature of trauma, your brain, your emotions, your physical memory, goes over and over the experience again and again, it isn't a conscious choice. If it is going to happen anyway I have to find ways of getting it over with quicker. I have to find ways to break that cycle. Denying that the cycle exists doesn't stop it from happening. I have to find a way to live with it so I have to rethink it and re approach it from different angles, until I can live with it peacefully, without it creeping in and sabotaging all my relationships and self worth.

"But you've never been sectioned, you can't be that bad!"
It's not a competition! I'm lucky, people have been sectioned for far less severe or noticeable states than what I've been in and certainly in the past they'd have inflicted all manner of barbaric 'treatment' on me. I have a great support network to keep me from getting too extreme and it is not just about how serious a diagnosis is, it is how severely a person reacts and copes when they are experiencing symptoms. It's also not how they like to deal with people these days, it is a last resort, unless you can pay for private treatment. The emphasis is on helping people stay in their usual environment, providing it is safe, but providing more support from various health workers. I guess it is partly because resources are stretched and partly because they don't want to cause yet more disruption in people's already difficult lives by shutting them away. Regardless of my 'credentials', how well I can handle things or control things as well as my ability to ask for help before I get too bad is probably what has kept me away from being hospitalised. But it’s always a possibility and is nothing to be ashamed of if that was the case.

"How bad does it really get?"
I don't know what is worse: feeling completely slowed down and numb and empty or being full of self loathing, fear and utter sadness and despair. Perhaps it is interchangeable. I over think, 'over feel', I feel utterly overwhelmed and powerless. I feel so small and vulnerable, like I'm completely exposed, and that life is this meteor storm falling down all around me and I'm just frozen to the spot, because I'm pretty sure I will die if I take another step and then death starts to seem appealing. It feels calming almost and then I start to obsess over what the easiest method to end it all would be, so that I wouldn't mess it up and then I wonder what would cause the least amount of grief to my mum and sister and dad and my partner and then I think about the cat and I feel so sad and guilty for leaving them all behind and I realise that I couldn't be responsible for causing them pain because that is so messed up and so there is no way out and that means I have to suffer forever and that really feels like a long time and on and on it goes...
In terms of practicalities I either over eat or don't eat at all, the hunger pang in my stomach is comforting, reassuring, that a part of me wants to survive, wants something. I no longer drink or drug or self medicate in any way because I was dying a slow and painful death and I am not going out like that. Thank goodness I have control over that right now. I haven't washed for maybe up to a month at times. I can't concentrate to read and have no energy to converse or move. Housework? What’s that? I can't find the energy to stand and wait for the kettle to boil so I have to go and lie down and then it goes cold and I have to re-boil so it takes about an hour to make a cup of something and then having to choose what something to have can be all too much to bare. Decisions are so difficult. I can’t think. The kettle itself feels like it weighs a ton and lawd forbid I smash a cup on the floor because that will lead to a full scale melt down which involves lying slumped against a kitchen cupboard bawling my eyes out at how hopeless and pointless everything is until the tears sting and the cat is staring at me in disbelief and I am forced to laugh at how pathetic I am. And so on it goes...

"Why do you always make jokes about yourself and your illness, isn't it a serious topic?"
Of course! But it's one of the ways of coping with it all. I have a very dark sense of humour. It's a way of creating a spark of light in a very dark place. It reminds me that I won't always feel this way and that it won't get the better of me forever. If I can still laugh I can keep going. I've done it since I was a kid, throwing up with snot and puke all over my face and my tears streaming I would shout 'I'm a monster roar!' as more sicky snot flew out of my nose. See that is a much nicer story than if I were to go into a monotone description of that time I had serious gastric flu and was terrified of being sick when I was 6 and I thought I was going to die. It's not about mocking others or being cruel to myself or belittling how tough life can be, it is simply about reducing the impact of knowing that you have this really tricky health problem that can break you and destroy all of the goodness in your life and you don't get to decide when it comes or when it leaves.
Sounds ominous doesn't it? Try living with it! You'll soon understand why you resort to any and all methods of coping!

So how should people ‘come out’ about mental illness?

Make sure you feel in a safe environment at the time and only share it with people you need or want to tell around you. It may be easier to break it to family in a group for example, but you will probably need to have a good one to one talk with your spouse before you tell your kids. It might help to have a friend on standby or with you so you can offload to them about it later and they can help you get home or keep you safe if you have a difficult time in talking about it.

Keep open minded about the responses you get. It may come as a shock to some and people’s initial reactions may not be what they really wanted to say. Give them time to let it sink in. Ultimately if they won’t accept you, mental warts and all, then don’t be afraid to keep them at arms length as they may hold you back in your recovery. It’s time to care of your own needs!

Be prepared for questions! There may be none, there may be many. You are not an encyclopaedia or an information point! It’s up to them if they want to further educate themselves about it, just be as honest as you dare.

You don’t have to disclose anything you don’t want to. If you know what triggered your ill health (drugs, personal tragedy, childhood abuse) it is entirely up to you how much you share. If it feels too raw or personal to talk about some of the hard stuff then don’t tell anyone that you don’t feel you can trust or people that you wouldn’t normally share personal stuff with ie colleagues, inlaws and your bin man.

Don’t be afraid or keep putting it off or it will become much harder which is just a waste of energy! You will most likely feel a huge sense of relief by letting it out! I have had more people share their own experiences with me or want to give me a big hug and help out than I have reject me, disapprove or dismiss it. In fact every single occasion has been 100% better than I imagined. Worrying is a waste of a good imagination!

You don’t have to take anyone’s advice. Peoples’ well meaning advice and ideas may be helpful, they may not be. Only you can become an expert on your own health management (although professional advice is STRONGLY recommended, please take special care when it comes to medication management, pharmaceuticals are controlled for a reason and you should always follow your doctors’ advice when it comes to starting or ending any medication. Always speak to your Doctor/CPN/Psychiatrist before making any changes in lifestyle and don’t stop their recommended treatment without speaking to them first). You may also find that resisting certain ideas holds you back so try to be open minded, but not naive, when it comes to people’s suggestions. If something does work, thinking ‘I wish I’d done this years ago’ is pointless, you weren’t ready to take it on for whatever reason, you have right now and your future to make it up to yourself.

And if someone ‘comes out’ to you about their mental health problems?

If someone opens up to you about their mental health problems please take the time to listen to them and let them finish what they are saying before interrupting or making any assumptions. It has probably taken them a lot to talk about it and it is important to just listen. They may not need any input from you, a listening ear can be all they need sometimes. It does not mean that they are asking anything from you or that you have to change your behaviour around them. It may just be that they want you to know so you can understand any unusual behaviour or so they don’t have to feel as though they are living in fear about being ‘found out’.

Make sure that they are seeking professional advice of some sort. You shouldn’t be expected to be solely responsible for them, especially if they are at risk to themselves or others. Most likely if they are telling you what is wrong they have already sought help and opening up is part of their healing.

Don’t panic, it’s not contagious! Please don’t change the way you are around them, unless they specifically request you do and it is a reasonable request! (ie please stop telling them to ‘smile’ all the time or encouraging them to binge drink. Or listening to Morrissey in their presence) They are most likely fighting to preserve who they are and although they may not be the same as they were before they certainly aren’t strangers who can’t be trusted.

Do your own research and don’t be afraid to seek out advice or help from the various organisations that offer support for friends and families of those with mental health problems.

Don’t feel bad for not realising what was going on! Maybe they have had it all along and just didn’t feel able to share it before. It just goes to show you can’t always spot it. People tend to get good at hiding their vulnerability from others, sometimes because they are ashamed, sometimes because half the struggle was just trying to keep going and wanting to fit in. It is a form of self preservation. How often do people say of suicide victims 'They seemed so happy, normal, I would never have guessed!'? People do what they feel is necessary to protect themselves. You can help make it easier by forgetting everything you’ve ever learnt about mental health from horror movies and start speaking to the person you know and love right in front of you.

They are not a specimen and are still your friend/brother/neighbour/colleague, first and foremost! By all means ask questions but respect the fact that they may not want to disclose everything and they also don’t need to be prodded or provoked with every meeting purely to convince you that they don’t need emergency treatment. Don’t assume that their illness is a threat to you or your friendship. Chances are they’ve told you because they are either in the process of getting help or they’ve been dealing with it for some time and feel a sense of control over things at the moment.

If they are asking for you to help them get professional help the first port of call should always be their GP or hospital in urgent cases. A quick look in the phone book or online will reveal a plethora of organisations and mental health charities that can offer support to you whilst you go through the process of helping them through a tough time.

Don’t treat the conversation like gossip! It may well have been a huge deal for them to confide in you, betraying their trust in you can be incredibly hurtful and damaging. Just because they are being open with you doesn’t mean that they are shouting it from the roof tops so please respect their privacy. If you need to offload on someone about it then do so without mentioning any names or details. You wouldn’t expect them to pass on any personal details about any health concerns you may have discussed with them so treat them with the same respect.

Be an advocate for them! If someone makes a cruel joke about mental illness or makes a generalisation about a mental disorder or people on sick pay etc, stand up to them and share what you’ve learned about mental illness. You don’t have to disclose any personal information and it helps to stamp out people’s ignorance on the subject and makes people more inclined to speak openly about it.

Hopefully employing these tactics, sharing experiences and exploring new ideas together will help to educate people, smash stereotypes and bring an end to the stigma surrounding mental illness and get people focussing on our similarities, instead of our differences.

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