Lived Experience Forum

[Monkey1]

HI Everyone,
just wanted to introduce myself and tell my story.  

Here are some random facts:

1. I don't know a lot of things, including who I am, and how other people think.

2. I like tools.

3. I have 4 kids and wife.

[Zoe7]

Hi @Monkey1 and welcome to the forum 

I too love tools and love working with them - whether that be with wood or with other materials. What do you like to create?

[oceangirl]

Hi @Monkey1 

Its nice meet you 

Welcome to the forum

Hope to see you in the forum

Type @, and  dropbox will appear and you can tag us

Have a great night

[Monkey1]

THank you @Zoe7 and @oceangirl. for your welcome.  

I'd like to share my story if that's ok. Not sure where to start.  Not sure exactly what I'm hoping for. It's a long story.

I first experienced what I call panic when I was 18, but I think it was different to 'panic attacks'.  I had an overwhelming sense of dread and gried that absolutely consumed my mind and made me immediately nauseous. 

I was diganosed by a psychiatrist with GAD and have been on medication ever since (now aged 48).  I have had several episodes, lasting about 3-4 weeks each, with different topics that I was worried about.

When I was 21, for example, I was overseas in Europe and suddenly terrified by the history of some kings and queens whose portraits were on the wall.  I remember feeling so sad to hear of a king who was mentally unwell who had killed himself.  I felt so sorry for him that I because nauseous and then I started thinking about many similar difficulties in life that had caused people grief, and this thought consumed me with further despair and terror.  I couldn't eat, I was shaking with terror.

The episodes, I think, were all at key junctures of life, like leaving uni, changing careers, moving country.

Those episodes are usuallu only for 2-3 weeks.  Outside of them, I usually feel ok, and everything feels in perspective, and I can enjoy life.  

I am shy and very afraid of rejection.  I really am afraid of my birthdays because I am afraid of them not wanting to come or of not enjoying themselves.  So I don't have them usually.

WIth people I know well, however, I can be very confident.

I have had quite a lot of conflict with my wife over the years, mostly about different expectations of life.  She says I have difficulty understanding my feelings, and that I don't know how to express, or "sit with" my feelings.  I don't really understand what that means.

My wife had depression for many years since we were married, and was on medication.  About 6 years ago, she got better - no medication, happy and  attributes her cure to diet (no sugar, GAPS).  I tried it to some extent but had no similar success.  My wife says that my mental illness is -in effect- my choice, because I could be cured if I went on the diet properly like she did.  As a result, she said she had moved forward in life and left me behind.  She said that she used to think that I was clever and simply fragile, but now she 'realised' that I was sick and stubbornly so.  She also expressed that I was a big disappointment to her; she had imagined that I would succeed in my career and attain a high position in my field, but that was barely the case.  I felt terrible, and this initiated one of my 'episodes'. 

She 'diagnosed' me with autism about 4 years ago, which I found very hurtful; but she said that if I accepted this, it would help her make sense of why she found living with me so hard.  I don't think I am austistic; mostly because I am intensely aware of body language and facial expressions.  It's one of my biggest sadnesses that my wife is not happier.  I have failed her in so many ways.

At that time she read a marriage-book which emphasised the need for men to feel respected (as opposed to loved, which was also needed, but less so).  So she began to find small things to congratulate me on; but to me it felt hollow and like the expression 'damning with faint praise'.  Similarly, she allowed me to be intimate with her again (after a 18 month period of denial) but it felt hollow.

When my family returned from overseas, a counsellor (from the organisation we worked for)  talked to both of us.  My wife expressed her sadness, and was despairing about me, and felt that I didn't support her in her desires (especially additional therapy for our children which she felt we needed but I did not).  She also said that she felt we had nothing in common and that I was 'sick'; she wondered whether she really had ever loved me.

This was really difficult to hear, and the counsellor spent some time with her and me separately.  I tried desperately from that point to win back my wife, but I am not succeeding.

We've been living back in Australia for 2 1/2 years now.

My wife and I have been trying really hard ever since to get on well with each other.

Last week I got an email on my phone by accident.  It was sent by one of my wife's friends and it referred to a discussion she had been having with my wife about my Borderline Personality Disorder.  It was the first I had heard of it. WHen I finally had the courage to tell my wife, it turns out that the company counsellor had told my wife that I showed traits of BPD, but that I was so fragile at the time, I shouldn't be told.  So all through the last 2 1/2 years my wife has been talking to a select group of her close friends about this condition I didn't know I had.

This is the reason for me joining this site.  The email accidentally sent from the friend to my phone triggered another 'episode'.  I am nauseous, I feel like I have failed my wife even more spectacularly  than ever, that the only reason she is still here is because she puts up with me for the sake of the children.  I feel terror of being a failure, being rejected, being alone.  I dread facing the people in the group with whom my wife had been talking about me.  Most of my nights are filled with tears.

My wife says 'at least you know now, we can move forward'.  Maybe there is hope.

I would so much love for my wife to be happy, and for her to 'delight' in me, rather than for me being a burden.

[Zoe7]

Hi @Monkey1 It seems to me that there have been several lines crossed by your wife and the counsellor and you have every right to be angry and upset with those. It also seems that your wife is trying to change you into someone you are not and that is super hard to deal with. Making assumtions on your health without a professional diagnosis is neither helpful nor appropriate - and it can be quite damaging when someone is 'labelled' as one thing or another without that professional conclusion or support. Also what works for one erson does not necessarily work for another. For some medication helps with symptoms, for some different forms of counselling and also some a change of diet but none of those are a singular and quick fix for many. Being able to recognise and understand triggers can often also be a long process. Have you discussed all this with your GP?

As for failing people - that is subjective. It may be that you see things differently now and have grown apart but that is something that should be worked out together - you have a voice here too. Reaching the peak of a career or excelling in any area does not always lead to happiness - there has to be a balance in life. As for 'hollow compliments' - I agree - when they are forced or ingenuous they can do more harm than good.

Thank you for sharing your story here - that takes a lot of courage and I hope as a community we can provide some of that additional support for you as you work through all this. 

[Monkey1]

Thank you @Zoe7 for reading through so much and for your thoughtful response.  There's a lot to work through.
I don't quite know what to do next (I mean, with this forum). I will start by reading some of the factsheets.  There are so many stories on this forum that I imagine I could learn from, so I guess reading widely would help.
Are those the main things I should be 'getting on with'?

[Former-Member]

Im not sure if this is how you join a thread but I'm also a newbie and am not sure how this whole thing works. 

some random facts about me

1. My favourite shape is a star

2. I'm a twin

3. I wish I had curly hair

I'm not confident yet to share my story but hopefully as I get used to all this it will come as my journey is shameful and silent.  

@oceangirl @Zoe7 @Monkey1 

[Zoe7]

The way we all 'use' the forums is different for everyone @Monkey1 You can read some threads/posts, factsheets or join in with conversations where you feel comfortable to do so. A good place to start is reading the Community Guidelines

I am more than happy to tag you in some threads I visit most often and introduce you to the wonderful members there - they are all amazing people who will both welcome and support you.

Starting this discussion here is also a great start. It is a bit quiet on the forums today but I am sure others will join in over time. In the meantime I am happy to answer any questions you have and support you along the way until you find your own feet and place here. I have certainly found the support, care and compassion of so many here invaluable and I hope you find that too.

[Zoe7]

Hey @Former-Member and welcome 

You have done exactly the right thing in joining a thread - I was just about to reply to your first post in the thread you started - which I will get to after this post.

As with @Monkey1 - have a look at the Community Guidelines and join in wherever you fee comfortable. I can also introduce you to some people on threads I mostly visit if you would like to join in there too.

Unlike you - I have curly hair and wish mine was straight - it is a nightmare to keep in any order but I also have it long to pull down the curls lol

Like so many of us here we all have a history and a story to tell - but that absolutely has to be in your own time - there is no pressure here at all to do that - what is important is you are supported and feel safe here. Like you I had been silent for a very long time but the support I received here plus the offline supports I have now allowed me to open up a little and for me it was freeing. There is a lot I still do not talk about and a lot I keep locked away but I am okay with that. We all have our ways of dealing with things and finding ways to cope. What being here has taught me is that it is okay not to be okay and sharing some of that journey with my peers that are caring and supportive has been life changing. I hope you find that too.

[grayhorn]

 Hi @Monkey1 

I'm a newby too. There's a few of us. After my last involuntary psyciatric stay earlier this year, a lovely male psych nurse who also had bipolar advised me to join an online support group...it took me a human gestation period to do it ( 10 months ).

Thankyou for sharing your story.  It takes a lot of courage.

It strikes me, as humans, regardless of where we are on what spectrum, and we're all on some spectrum - it's called being human - we find it so difficult to accept ourselves and others as we are. 

I guess it's some sort of cosmic joke.

Anyway, first duty of care is to self.  Have faith in yourself.  See things from your own perspective even though others try and tell us black is white. 

You're not alone.