Lived Experience Forum

[Sehnsucht]

I have gotten to a point in my life where I am increasingly aware that hurdles just get higher rather than lower.

Despite having had just the one acute episode of psychosis, society is constructed to inform me it is me that must keep on keeping on, from start to finish.

Right from the start, the questions, "do you think you have this or that?", began. In no other realm of illness does a dr direct you to google and conclude your own diagnosis. Yet, when it comes to mental illness, this is precisely what they want.

It's no wonder that from there on in, my life has been one indirect blow of victim blaming after another. Like, it's not enough that schizoaffective disorder itself limited me and my quality of life greatly, for a time. The irony is that the more I grow to manage it, the more I am silenced, and the more that society limits, even oppresses, me. The more I participate and contribute, the more society denies me.

And I mean, literally, denies me. Do I ever tell an employer, or many of my current friends and family, that I am schizoaffective?
How often have I sat and wondered, am I really schizoaffective, surely I am not ill enough, often enough, to maintain that I am schizoaffective? I often think, no, I'm not. Why?
Because society defines mental illness as specific, horrifying stories. As monsters, as all the horrible things that happen to someone with a mental illness, and worse, the things that happen to those that surround them.

Sure, I have had just the one acute episode. But you know what? That one acute episode took from me many things. My more recognisable health suffered for one.

But the thing that concerns me the most, is what it took from my place in society.

Because beyond that episode, this is my life:

I went back to school. No practical supports were put in place. Where I began failing, the response was that it 'was ok, it's ok if you're not ready'. The school did little other than that. Make it 'allowable', quite explicitly, that I fail. Go away, come back another day. So, I did.
I returned to do VCE at TAFE. I again found myself floundering. But these failings were no reflection of my comprehension of the topics. I had been awarded prizes for the knowledge I had fostered in many topics. In fact, this was the first defense I was given whenever I asked for help; 'you won't fail the exams, Sehnsucht, we all know you have a very extensive understanding of all these topics!'. Yet, my cognitive ability to order my thoughts into an exam format, something that prior to being ill had been simple (and thus frustrated and tormented me), was too reduced. I failed.  And it was only at that point that the establishment offers 'special consideration', something that you must apply for, qualify that it is just.

And that is what I'm talking about. So much of many awareness campaigns, is us having to qualify how crazy we are, and do so by laying out on the table those humiliating and scary things that really are only relevant to your personal psychiatrist/psychologist.  It's not enough to say, 'hey, mental illness means that within society I struggle with x,y,z'. No, we're supposed to increase awareness by telling the world I spent my youth starving myself under a belief that the entire world was tainted with pollution, and that tainted entities can't aspire to becoming a floating oneness with the world. They want to know what humiliating act I got arrested for, not how the legal system supported/failed to support me.

So, I abandoned school. Got qualified as a swim instructor, applied to Camp America. Disclosed medical history as asked of me. Chased down old psych's and dr's in order to get clearance forms for the work i was applying for. I got those clearances from those medical professionals. The camp hire company returned my deposit to me, apparently they are more qualified than a psychiatrist who personally treated my case, to determine my suitability for the job, based upon medical history.
So from there on in, my contribution to society in respect to productivity, has been reliant upon me denying my illness. I just no longer disclose it.

I'm tired of qualifying. But I'm tired of denying myself possible help. I'm tired of feeling society isn't inclusive of me. I'm tired of reading friends attack individuals we all know nothing about in news stories (can't we condemn* the acts, and not villify the person with attacks of 'hope they rot in jail/die/get what's coming to them').

I'm angry that education is something I really take an interest in, but that I am denied it. I instead work, denying a lot of me, that being schizoaffective disorder, from the moment I apply for that job.

Tired and angry and thank you for providing this space to free all that.

S x

*edited to fix a word that was entirely the opposite of the one I intended!

[JoseJones]

@Sehnsucht,

Welcome to the forums, and I want to thank you for sharing your story with us.  It brought me a lot of insight into what sort of hurdles you might encounter while managing SD, and it's really added something valuable to my knowledge.  

We have a regular poster @kenny66 who has written at some length about his experiences with schizoaffective disorder.  You can find a couple of good examples here and here.  You can also read the experiences of @AmiRemixed in this recent thread, and this one by @BarbaraH.

There are many regular posters on these forums, and we have a very vibrant and supportive community where people can feel heard and understood. @Jacques @Appleblossom @justanother47yr are among them, and have added a lot to these forums over the months and years.

It sounds like you've had a lot of experiences in life where you've felt excluded and stigmatised, and I'm very sorry to hear that.  it must be very alienating being made to feel as if you belong to some sort of 'other'.  Furthermore, it's clear from your post that you have a lively intellect and find a real joy in knowledge and understanding.  It must be incredibly frustrating to feel as if you've been denied the opportunity to pursue education, as well as other opportunities, because of something that is part of you. In a sense, it sounds like you feel as if you're now 'living a lie', having to conceal a part of yourself that society ought to be able to deal with.  Can you tell us a bit more about what sort of world you'd like to see?  Have you had experiences where you've felt included and accepted for who you are?  We could all gain a greater understanding from your insight.

[Appleblossom]

Hi @Sehnsucht

I have been singing a little German lately. We all long to be heard and understood. I like your name... pining .. yearning ..

I also think about the whys of people's stories. There is a lot of waste of human potential. I hope you find some solace here.

[Sehnsucht]

I will follow the links you gave me, thank you for welcoming me here. I see it to be a productive space, rather than one merely for bringing us all together.

I would, for a start, like to see the culture of 'thanking' us all for our stories squashed some.

So many 'awareness' campaigns work from just this premise: that if we only just shared our experience more, that it would change stigma. Is that asking us to qualify our illness or experience? Does it often humiliate us in the process? A lot of the time it comes across that way.
The premise is that if we share we can be thanked for it, and we will feel better for it. As though I needed the permission of others to be happy/unhappy, unhealthy/healthy. Or conversely, that I need to permit others to helping me. As though, if I just permitted help, help would just come. 

Suggesting I don't permit help, and I only want it if it is convenient to others. Did I just serve you in highlighting my struggle? What did I gain from it? Perhaps there are gains to come. What might they be?

I have already graciously given some examples of where I am disadvantaged. How might anyone address those? Is it so hard for people to see that a lot of what I have endured is illogical and stems merely from stigma?

I find a lot of campaigns that bang on about sharing, encourage the population to ask of me the exact details of all I have experienced, in order to 'understand'. If I just tell someone what I have done, where and when, while ill, then they may understand. But they won't, if they've not been through it. So in the context of sharing with others who are shizoaffective/have mental ailments, yes there can be a strength to it. To others, it's a brick wall of wasted energy.

Consider, the news story where someone suffers at the hands of someone else. Us, the wider public, react. The most common question is "How could they possibly do that?!! How could any human be so cruel?". They aren't asking to know. They want to make a statement that allows them to judge that person. The question, ironically, is asked to perpetuate their ignorance. They are saying, "I can't possibly understand this, therefore it isn't human." If I share enough, I will inevitably come across someone that will say "Well hang back, that just isn't right. How could you live with yourself?". And I say inevitably, because the stigma exists, and me sharing my stories isn't directly questioning anyone's belief. That belief will still be there, so I am still subjecting myself to the ridicule.

But here I am asking is it possible for everyone, regardless of their understanding of the nitty gritty, to just accept systemically shoving people aside is, well, obviously a tad ignorant. Let's all just shove the mess in the closet, shall we? It's not my closet that needs opening. It is theirs.


Another thing I would like to highlight, is that my intelligence has no bearing on the injustice. Is it somehow more unjust due to a 'lively intellect'? Do we then only validate feelings of exclusion where one is considered 'suited' to those feelings or not?


I'm not sure I've ever really felt included in society, especially post my acute episode. Some of that stems from paranoia and depressions, but much of it is societal exclusion. I am not wanted.
I have often struggled to assosciate with other schizoaffectives, or even the broader population of those with mental health ailments (?). But I realise now that there is no set mould, that idea is another furfy that society perpetuates. Who can blame them, doctors are so focussed on defining and redifining each and every ailment they can, both in their individual diagnoses, and broadly with things such as the DSM. You're one thing one day, another the next. Does the label change my presentation? Should not my presentation dictate my treatment? Does this lumping of groups and treatments happen in other types of disease, such as heart or lung? If so, I find that idea kind of scary, it's very limited and ignorant.

In small interactions I do feel included, I love my husband, I especially love my two girls. But given a lot of my participation in life is dependant upon those lies I gave when recovering and entering the workforce/community, then I now sit here and wonder, have I denied myself the opportunity to be truly included even among those I love? 
I wouldn't question my girls though.
Actually, the children I teach. I probably have stuck with swim teaching all these years, due to the fact that working with children is working in an environment very much free of prejudice (at least relatively), and receptive to learning and development.
I feel content when I write, there is an inner belonging.


I do appreciate being welcomed here, and being heard. I just don't want 'speaking out' to be expected of everyone, for it to be some sort of standard that dictates whether or not I am in need of, or entitled to, help. A lot of your response examplifies just the type of responses I feel perpetuate this shift of blame. We guage the success of 'awareness' campaigns by how much is shared. Not by how much we have actively questioned anyone's belief.


I dream of a world of time travel. Haha.
That is an interesting question. I dream of a world in which I have had a solid work history where continuous contributions to superannuation have been made, where I'm not led to question my suitability as a mother, where I don't feel I must prove myself more than an 'able' person. I dream of a world where I feel included.

[Sehnsucht]

Sehnsucht is hands-down, my most favoured state of feeling/being. I love the word and its usages, its meaning.


In regards to human waste, I hear you.

I hope you find solace here too, but more than that, some sort of direction towards a wider inclusivity. Let's work on it 🙂

[Appleblossom]

Yes .. I have benefitted from this site. I have been working on inclusion.  Its a given in my life. 

Being a swim teacher is a great job. @Sehnsucht I have spent a lot of time in the water. 

Now that I am more involved in social groups, and feel more accepted, my defensiveness is lower.  It makes it easier for everyone, but was there for a reason. 

[BeeGee]

Gosh, that seems to me to be a pretty major overreaction to someone thanking you for telling your story.  Maybe it's not so laden with hidden meaning or Machiavellian manipulation - maybe it really is just "thank you".

I get that sometimes we can be disingenuous in offering the social graces - but, you know, politeness and kind words are a kind of social lubricant that provides space between the naked us and others so that our sharp edges and rough surfaces don't constantly abrade others.  Authentic or not, they serve a purpose... and I'm not sure I can get on board with your rather negative assessment of that purpose.

I don't say this to squash your response or to try to mould you into some more "acceptable configuration" - you are who you are, and I would hope that we are big enough to deal with one another's differences in a mature and accepting manner.  I do wonder though whether you respond like this to people in the "real" world, and if so whether you find this to be conducive to establishing and maintaining good interpersonal connections?

I think it's possible to be frank, honest and open with each other without being harsh or judgemental.  I wonder if you are aware that your post may be perceived in that light?  I suspect this may come as a surprise, at least at some level.

[Sehnsucht]

@Begee,
I hear that my response has been interpreted as being ungrateful.
I am sorry it has hurt you.

May I clarify, as I don't disagree with what you say, so I wonder if I elaborate on my point more if you can be reassured I don't hate 'thank you' or 'please' as a matter of strict ruling. I'm trying to picture how I would indeed get by in everyday life without them. Conversations sound so strange and empty without!

It is in the context of stigma, ableism, and 'awareness' that I question some of the use of 'thanks'. It is not an intended slight by the person who delivers the thanks, not at all. They mean well. But, given their intention is to help, then perhaps they could get a little less defensive if the person they're trying to help says it hasn't helped. Because, is telling someone how to be helped, helpful?

Anyway, because sometimes reading things from another voice can help with understanding things, I have found this article that discusses this topic.

I am interested in your thoughts, any more questions you may have.

http://everydayfeminism.com/2015/01/how-feminism-perpetuates-ableism/

[Sehnsucht]

Wrong article sorry!

Although also a good read. Hang on.

[Sehnsucht]

Oh bummer. I don't have what I wanted bookmarked.

So short summary,
Sharing and thanking in peer groups obviously has therapeutic value, and I myself am grateful for such forums as this.

But when we are made to feel obliged to share by campaigns intended to help, and more than that, asked to share only the things that are seen as humiliating and shameful (in order to 'normalise').... do you feel this makes sense, do you feel it works?

Genuinely interested in your own insight. I speak for myself, I can't speak for everyone experiencing mental illness. X