New and...feeling nervous.

[Murmur]

Hi.

Um...not sure where to start. I have been on many forums like this in the past. None were Australian so maybe it'll be easier to find support closer to home.

I'm not a big fan of talking about myself but I'll try, just to give you an idea.

I am 33. Female. Gay (though not feeling much admiration for anyone right now). Artist. Currently studying design. I have a rare genetic disorder and I look "normal" but am in constant pain and too bendy. It takes too long to describe my illness. Maybe I'll talk about it sometime, it is a horrible thing.

I have suffered depression, anxiety,panic disorder since I was 9. My parents are hippies who don't believe in psychologists. They left me to my own devices most ofthe time as they were too busy being intellectuals, and my mum was always sick. I have self-harmed since 14 and I have managed not to for 2 years but seem to have started again. I have tried to die...let me see...5 or 6 times now. I am told I am very talented but I don't see how that is relevant when I am not enjoying my life at all. I have just started seeing a new psych and she is lovely. Not sure if she is anything else.

As you can probably see, I am very bitter and jaded. I feel very alone, I have always felt very alone, I don't believe I have what it takes to keep friends, let alone anything more serious. Sorry I'm talking in such a stilted way, I'm a bit of a control freak so this is my way of not losing it.

Anyhow...yep, I've seen all sides of the mental health industry, and have actually been told by many professionals that I fall into the "too hard box"

I'm not sounding very likeable right now, and that's weird because apparently I'm very funny. Oh well.

Anyhow....I joined to BB tonight because...because.....I don't know. I need solutions, and care.

[The_Real_David_Charles]

Dear Murmur,

I hear you.   Being thought of as in the "too hard box" is a sort of reverse compliment so maybe your skills are quite exceptional after all.    I don't mean to upset you but is it possible to view your parents hippiosity as also being in the "too hard box" too ?  Minority group and all that.

You've tried twice as hard as me to die.    I find myself thinking that the path to dying gets easier the more we try but also the path to realising there might be something to live for gets stronger.  It's a connundrun.   Be interesting to see if you could design something that relates to all this.   I'm a composer and I often ad lib stuff on the piano to get out my feelings.   Then my wife will compassionately say "Can you shut up for God's sake !  I'm trying to watch The Voice Finals".

Maybe there's a bit of Aspergers mixed in with your situation.   Most of the internet Aspergers sites have tests/questions to ascertain your liability.   I just scored borderline (even though I am also long term bipolar) and it was kind of reassuring as all the quirky behaviour, avoidance and need to control stuff made sense.   You can't be funny unless you have great awareness, timing and a manner that entertains.  Kind of flies in the face of your own analysis of being "stilted".   Maybe your stilted manner is actually highly functioning compared to most.

Like when ladies ask "Is my bum big in this ?" when they might be after gentle reassurance rather than a blow by blow account of every dimple, wrinkle and fatty deposit.    You probably just need a like minded soul to interchange thoughts, communicate openly and dance the tango. 

Adios, David.

PS    I remember now that the Mental Health Orgnisations have recently de-centralised Aspergers as a condition.   Now it's just a general part of the Autistic Spectrum.   Probably created a whole raft of Anger Management with that professional minimalisation.   Hope this helps.   I have to prepare the Voice cheese and biscuits now.  Apparantly there is an ad break.   Of Mice and Men !

[kelly]

 Hi! And welcome. You'll find a few top notch caring people her, for sure. Clearly, you're pretty intelligent. Well, you come across that way. You seem to have something to offer the world, with your art and wit. 

I'm sorry you suffer with physical pain, as well. I can't imagine. I don't want to imagine. It must grind you down, though.

This forum is helping me. It seems to make feeling rubbish a little less lonely, knowing there are others in the same boat. 

I hope you have are feeling a little better by the time you see this, and while I can't offer any solutions, I can offer my sympathies and support.

[geoff]

dear Murmur, I don't see any bitterness in your comment at all, and was rather shocked when I got to that paragraph.

You have this rare genetic disorder which you have to struggle with, but would be really interested to know what it is, but that's in your time.

It seems as though your childhood has been difficult and these attempts on your own life several times indicate this, plus the self harm, prove that you have been to hell and back.

This site doesn't discriminate against what sex you are, so your gay, there's no difference between you and a hetersexual, depression doesn't give a rats razoo, it will inflict it's curse on anyone.

I'm sure that people often fall in love with their psych. either same sex or different sex, although legally I don't think that any relationship would be aloud, but then who's to know.

My new psychologist who I have only seen about 4 times always touches me on the shoulder or back when I leave, but I don't see her anymore, she was good, but I didn't feel as though I could really click with her, but I suppose that after seeing my original psych. for 20 odd years, this new one didn't fill the void.

I would think that by being in 'the too hard box', would be a challenge for a psych. to be able to weave their way through your mind.

You know the old saying 'life's not meant be easy', and in reality it's not, we always seem to have to climb the mountain so we can achieve and cope with life.

You don't need to criticise yourself, which you have done in your comment several times, just relax, and please reply back to us. L Geoff. x

[Murmur]

Thank you everyone...you all made me smile. Asperger's huh? My uncle swears half our family, including him, has it!

I'm impressed you want to know what my disability is. No-one ever does, except when I do party tricks (hyper-mobility, thus the bendy comment) I have a connective tissue disorder called Ehlers Danlos Syndrome. Basically it means all of me is too soft and stretchy. It includes scoliosis, a heart condition, severe short-sightedness, joint hyper-mobility, taller than I should be, soft and easily damaged skin (my scars are awful), and more exciting things like easily dislocated joints, migraines, IBS, chronic fatigue and chronic pain. 

Luckily, most people with EDS are attractively tall with soft skin and we age well, so there is a bonus. A small bonus?

As to my parents...well, I don't think they were a minority, I grew up in a town overrun with hippies. A plague of hippies! My mother has had severe depression and manic episodes (well, I think she presented as quite manic at times) and mental health issues are pretty high in my family history.

Hm. sorry I keep going off to another point you guys mentioned. My teacher told me off today for being negative about myself, that is a continuing struggle. I am very, very hard on myself. Always have been. Maybe it stems from my parents giving me absolutely no guidance or rules to live by.

And thank you for thinking I'm intelligent...comes from lots of time spent by myself reading as a kid.

And thank you for the lovely welcomes....maybe I'm nicer than I think I am? I am very distant from the world a lot of the time, it's nice to be around people who understand.

A.

[geoff]

dear Murmur, I am so pleased that you have joined us on Beyond Blue, and taken the trust that we will listen and be able to understand what you are going through.

I have googled Ehlers Danlos Syndrome, because I didn't know what this illness was, and my god, you poor thing it must have been absolutely terrible for you in the past but also now, and can well and truly know why your are suffering from depression.

I also appreciate the fact that you are gay, and that's something NOT to be ashamed of, and I hope you can read into this comment, I'm sure you can, so there's nothing to be embarrassed about this.

It makes me wonder even more why these psychs. didn't go that extra distance to try and help you, it's obviously a condition that needs understanding and support, but with your new psych. hopefully this may change.

Please keep talking to us, because that's what this site is here for. Take care and try not to injure yourself. L Geoff. x

[Murmur]

Wow, thank you for taking the time to Google EDS, it just takes too much time to explain here. 

It's funny you bring up the gay thing, it is an important part of me, but only a small part of who I am. I have never been ashamed of that part of me, it's more of a shame that so many other people find it hard to come to terms with. It's as ordinary as having blue eyes, or freckles, or liking mystery novels. It's just a part of me. Strangely I have always been fairly ok with that part of me. Odd.

Ha, my new psych seems pretty useless, and it's one of those 12 session deals because I can't afford her otherwise. She keeps promising to look up my syndrome but keeps forgetting. It's not a very well known one. I find her hard to talk to but I'll give her a chance.

Maybe the professionals haven't helped because I fall in the too-hard-box. But unfortunately a huge number of people living with chronic illness suffer depression. Not a big surprise. By the way, I'm not too bad yet, I can still walk and care for myself, but my big fear is of having to be in a wheelchair one day. It is a firm possibility.

[geoff]

dear Murmur, disappointing that your psych. hasn't even tried to look this illness up on the net, however we won't panic yet.

If you can print out any information, but not in great deal, because just a few paragraphs would do, it's easy to understand the enormity of this massive disease that unfortunately you have got for her to know the pitfalls of this illness.

When she reads about Ehlers Danlos Syndrome then hopefully there will be a much better communication.

We won't even think about a wheel chair yet, as I know that I will be facing the same problem down the track, so can we just put that idea in the furthest corner, covered up by a blanket.

Look after yourself OK. L Geoff. x

[Kaus]

I have hEDS too!!! Annnd autism, ADHD, Fibro, me/cfs and POTS.

I can definitely relate to parents who don't believe in traditional healthcare. I certainly was not medically cared for in a way that would have been helpful to my condition.

It is very isolating and depressing, I've never felt so alone.

My freinds, family and partner don't get it. Most don't seem to care to try, I don't think they even believe me.

I love that someone on here Googled your condition, it always means so much when people take the time to research EDS. Its so hard to explain when you're foggy in the brain and there's so much to understand.

I also get what you're saying about being talented, I'm sure you are. But your life is also incredibly tough, and even being creative and doing things you love is tough. And it certainly doesn't cancel out all of the challenges you deal with.

I'm not even sure where I'm going...just rambling lol.

I just decided to look on here for support today and became very excited when another person "like me" was here, I hope it helps you feel less alone too.