Marginalisation, it becomes more evident the more I participate in society.

Hi @Sehnsucht

Your posts have given me something to think about. I tend to say 'Thank you' a lot in these forums when people share. What you have flagged for me is that perhaps I should be more specific as to what I'm grateful for.

When I thank people here, it's not so much about their story as such, it's more about the courage it took to share. Al ot of people could just come here, read stuff, and benefit from others - (which can be fine) but instead, these people (like yourself) who have opened up, have given part of themselves - it could have taken courage, bravery, time, emotional energy - and I'm thanking them for that.

As a side note - I totally understand your thoughts on 'campaigns' - sometimes they seem superficial. In my experience the most helpful and empowering campaigns I've seen have been ones where people who have had genuine experiences of whatever the campaign is about, have shared their stories - rather than glamorised and/or dramatised stories/images/advertisements.

What I'm really passionate about (& is at the heart of SANE Australia) is meaningful involvement from people who've had first hand experiences. There's some posts I have started here & here about schizophrenia - asking people to share their experiences - good & bad. So your posts have made me question whether we should do things like this.... though if people don't share.. the public continue to be ignorant or oblivious to the reality, organisations create tokenistic or inaccurate perceptions and those who think they are the only ones, continue to feel isolated.

I'm really open to your suggestions..

If we weren't to ask people to share their stories to raise awareness... what would be the most meaningful way for people with lived experience to be involved?

Thank you for this thought provoking discussion.

Hi, @NikNik

[just to pontentially confuse everyone lol] Thank you for taking the time to read my thoughts and offer yours. 🙂

I think there's an important differentiation to be made between the benefiicial role sharing has in support groups (forums where sufferers come together for solidarity and support, where we each know a lot of the experiences and suffering first hand, we've been there too), and the role of sharing in campaigns that are targeting stigma.
What you say about framing the thanks, this is what I have come to do aswell. I think this changes the reception of the thanks a lot, being shown that it has intention other than fulfilling an expectation to share. If that makes sense?


Perhaps sharing in 'awareness' campaigns could be more limited to the social impact that diagnoses can have on our lives, rather than the nitty gritty definitions of diseases/ailments. Something to question prejudice, to make people aware and uncomfortable, to tell them actually we shouldn't have to worry about offending you if we tell you your effort isn't helping, or worse, hurtful.
Something that shifts the blame away from sufferers.

I recently brought a lot of this up with friends and family. One of the defences used for 'thanks' was that they were grateful for my bravery, for speaking up. That mental illness is such a silent 'unseen' ailment, and that people need reminding that it is real, that I may be suffering.
It sat uncomfortable, that I was brave to tell them that I was hurt. It kind of inferred that it is acceptable to have prejudice go unchallenged, that it is a bonus I did so.
Also, I had to point out that if my ailment goes so unseen, why do I so openly get discriminated for it? I asked that they think about that, about whether applauding me for 'braving' being 'seen' was perpetuating their ignorance. Also, being told that 'if only mental illness were more visible', this statement shifts blame back onto me. If only I were more visible. Or less visible. Then people would be accepting.
How about people just become less judgemental about what they do or don't see. Seems simple enough.... lol! If only 🙂


As touched on earlier, my feelings regarding thanks and awareness are really quite specific: that some campaigns truly do model their purpose and success based solely upon sharing and thanking. This then means that we are all obliged to share, if we don't share, we're not getting help, and we're most certainly not helping others. In my view this is just perpetuating an ignorant view, one of 'it's not up to me as an able person, it's up to them'. We, the ones disadvantaged, must solve the hurt they dish, and do so without that hurt being acknowledged and an apology given for it.
It is for this reason, I literally often see campaigns as victim blaming.


As for alternatives.... I'm not quite there yet myself either, so it's great others are joining this discussion. The most I have come up with so far is that if it's about awareness, then let's make it about making people aware of their ignorance and prejudice, rather than our individual struggles. The support groups will still be there, and we can continue to advertise their existence, so that people who do need stories for solidarity and to feel less alone on that level, can still do so.
But the two are seperate, sharing amongst ourselves, and awareness to the greater public. This could well have flaws and drawbacks, I haven't sat and explored the idea much myself yet.

I will continue to think over the week, and will continue to read and think over the feedback I'm getting. 🙂

I wish everyone a good night's sleep! x

@Sehnsucht I get it. This obligation on us to 'share' and then people who sit quiety horrified, or secretly judging. These 'sharing what it is like' campaigns feel to me like a public psycotherapy moment. Who is it for? Is it for us (us being people living with various menatl illness labels and struggly real lived lives) or is it for the boffins, the professionals, the NGO's and the Government so they can tick off "We are helping people with Mental Illness". There is no HOPE in our stories, but really if we are still here 20, 30, 40, 50 years later of living with this we must have some hope and that qualifies as a huge success really!

I used to work in the area of HIV/AIDs and facilitate public education, we would have HIV positive speakers come in and tell their stories to raise consciousness about living with HIV and to humanise what was seen as a 'scary' or tainted disease back then. These sessions were powerful and you could see the lights going on in people's eyes and minds about 'oh, this is just a person living with an illness' - but you are right in the sharing of mental health stories we tend to not be able to narate our lived experience TODAY buthave to recount what got us there, the abuse, the neglect, the 'difference', the lonliness, the moments of bad decision making etc. So we don;t tend to really TALK about those day to day negotiation anbout how XYZ is harder for us. We tell the salcious detail because that is what we have been groomed to do via pyscotherapy and we have not had a clear way of telling the day to day struggle story, if fact if we could say "I find this difficult" maybe pyschotherapists could give us some tips on how to overcome some of the deficits invovled in living with a mental illness, not just squirreling around in our dysphoria. The media, the orgs that run these campaigns get us to tell what they think people think they want to hear, not what we want to tell.

I hear your story about the struggle at college, and I am so sorry you were 'failed' and not given the opportunity before failing to succeed. That is an important story and one I hope the moderators will pick up and take to a round table in terms of facilitating success in futher education for people who live with mental illness.

I absolutely loved your long analogy about the Martian with 2 tentacles in a society of 5 tentacaled martians. Spot on. I'm a two tentacled martian in my community.

I live with the labels Bi polar II, core anxiety, OCD and CPTSD. I too have had a couple of pyschotic breaks and I suspect had I presented at an institution during those times I would have been diagnosed with Schitzoid Affective disorder. Whatever the diagnosis applied, in here is the real and whole person.

Your lived experience of being marginalised at the institution of study is appalling. Goes to show that as people living with mental health issues (acknowledged) that we are still expected to fit into the 'norm' with no actual assistance. We are set up so that if we fail it is OUR failure not theirs.

I also get in the wider context of the 'thank you' but I have found here it is genuine and encouragment. I dislike being told I am 'courageous' for telling my life's story, please, just hear me. Encouragement is so much more authentic when one engages with the content of what I have said, when someone takes the time to pick something that resonated for them and speaks of it with genuine reflection.

I had to disclose recently about my mental health to a person I would hace preferred not to, I hoped it would provide the person i disclosed to a clue as to the extra struggle I have to go through to make decisions. uphold being a big person in a very difficult situation with my ageing mum. All it has done though is sideline my voice and this person is using it agaisnt me subtely. I cannot express feeling anxious, worried or feeling overwhelmed by the sudden new responsibility of being my Mum's carer with out it being seen as weakness, when anyone in my position struggles while learning to negotiate a whole new landscape of releationship, industry (aged care) and having to make important life decisions FOR someone else. My decision making is affected (slowed down) by my medication and my anxiety, doesn't mean I am incompetent, just it takes a bit more time to arrive at the best solution than it used to.

As we get to know each other, I try to impute good intentions to the people who respond to me here, we ALL struggle, we are all here because life has handed us crap on a plate and we are trying our best to live with myriad issues. Many of the people who come here and share are reticient, some confused about new diagnosis and learning a new way of being and language as we speak about common ailments. Being kind in our own community is important for all of us, but gently challenging is also important because we learn thus.

Glad you are here @Sehnsucht.

A warm hello to all

My honest thoughts on reading this topic is that I do believe when we tend to overthink or over intellectualise a simple gesture of gratitude such as "thank you for sharing", my concern is that we could start to lose the reality of the genuine concern, kindness, politeness, and important message behind it by "overanalysing " and finding things behind that gesture that simply aren't there; "losing the simplistic face value of a harmless gesture" by overcomplicating it in our minds. This distorts ones perception I have found.

I use to do this in the past and eventually realised that it complicated relations with others which only served "to marginalise myself in society". To know if this is the case or not requires honest self evaluation and/or listening to a trusted other.

My further thoughts on this topic are that by asking others to "squash down" their genuine appreciation or polite expression of "thanks", is to ask them to "squash down" their gratitude, compassion or freedom of expression because of another's projection on it. In all honesty I can't adhere to that and I don't believe anyone should feel obliged to do so as whether heartfelt or disingenuous - it is a harmless gesture.

I am not saying to anyone to not question things - but within reason.

I am thankful for this topic because it has made me realise just how important it is to thank others for sharing their stories. As one thing through life experience I have learnt is that those who fulfill desperate acts successfully "rarely talk about it", "do not share with others ".

Campaigns and individuals who encourage others in distress to reach out, to share, to talk, as on this forum, are invaluable towards helping to save lives. Thanking someone for sharing is encouraging others to also reach out. Vital in saving lives. But in no way does it make them "obliged to" - that's the misperception happening here I believe. Those who wish not to share gain support through those who do by recognising some of theirselves/situation in others stories, and gaining from the compassion, support and advice given that best suits their own issues.

I have never experienced in any of the groups or campaigns I sited (and they have been many), anyone being obliged/forced to indulge any information about themselves they were not comfortable in sharing. They could always pass, be brief by saying hello or just observe.

If saying thank you to someone for sharing their story is perceived by some as an obligation to share theirs, then that is a misinterpretation on their part. Perhaps the organisers could make it clear that there is no such obligation from the out start to prevent such misunderstandings and continue to genuinely thank those who do; as if there is no encouragement to express and share lived experiences of mental illness through perceived fear of ridicule or judgement then we are back to the good old days of keeping these experiences/struggles "taboo".

And that is the essence of true stigma that some still struggle from - repression of expressing their emotions through fear of being perceived as weak or crazy. That real stigma that stops others from reaching out and gaining possible support costs lives. A huge step backwards in my humble opinion.

Without honestly sharing we cannot uncover and gain support and advice towards healing from the wider community. Keep doing what you are doing! Those who have lived and come through it are invaluable support .

I for one thank all those who have exhibited courage by reaching out and sharing their stories - making myself and others feel less alone and unmarginalised.

Thank you for the thought provoking topic Sehnsucht

Hi @Sehnsucht,

Thanks for your very thoughtful reply. You've obviously put a lot of thought and effort into this subject! I've only just read your recent posts and would like to sit with them for a few days and digest what you've said before I reply fully.

For what it's worth though, I find myself now second-guessing myself in thanking you - even though I am genuinely appreciative of what you've put into your post. How will this be received, I wonder? Will this be viewed as tokenism, or worse, manipulation? Will this be taken in the spirit in which it is given, or have imputed to it meanings that were never intended? I think in the end we have to be true to ourselves in what we say - to be genuine, honest and caring; others can - and will - think whatever they like and we can have no control over that. But more to come after my brain enzymes have done their digestive work.

I think the issue with "thank you" operates differently for the speaker or the listener. It is dependant on the content shared and the emotional integrity of the "thanks". A person can be genuine in their thanking but maybe the teller has heard too many artificial unconvincing thankers and sometimes doesnt hear the real compassion. Usually I feel validated when there is a little bit of content that relates to me and what was shared rather than just kind polite words. Without content they can seem empty. Thanks for exploring the issue so well @Sehnsucht.

I am all for "please, excuse me and thank you" ... as social lubricants .. but it shouldnt stop there. @BeeGee

I have also been told "Thank you for sharing" in a tone of voice that wasnt at all thankful ... a slap in the face.

I was told off once, by an older lady, when I thought I had patiently listened to her problems and tried to be consoling and positive. She was having nothing of it ... and almost publicly shamed me in the Tai Chi church group??? for not caring ... No I did not know what it was like to 20 years older, but I was attending and trying. I was certainly not getting any support .. in the too hard basket .. so went into caring role .. and left that group when my energy drained too many times.

I also have shared when I have not been aware of all the possible consequences .... some of us do not really know what "comfortable" is ..

There can also be a tensions between being brief or abrupt and over analysing or giving a complex topic due attention ...

@NikNik,

Thanks again for your input, it's Mother's day so I have my nails on, have had an epic brunch that shall carry me through the day, and have time free to catch up on this forum! Apologies for the silence, especially after receiving such considered feedback.

I have clicked through and have thought much about the conflict between how I feel in regards to stories going some way to perpetuating ignorance, and the need for those with lived experiences to be the voices being amplified and heard (so as to not be silenced by ignorance).

It really isn't simple at all, as I do see the merits in collecting stories in the way you have with those two forum posts. Perhaps context is key though. This is clearly a forum very much amplifying the voices of those experiencing mental illnesses first hand. More than that, I was drawn to the SANE forums as popping up in my social media accounts were articles that presented themselves as very much open to listening. To elaborate, rather than dictating this that and the other, your social media presence brings up questions, and asks for answers. Rather than saying "this is the answer, here is how you receive help", here on these forums there are such amazing productive contributions happening, the message is more "we have questions, how do you answer?". It throws the power back to us, rather than the other way around.

So in short, without presumption on either side, there is no prejudice, so it opens the conversation up to genuine stories and thoughts etc.

As opposed to say, asking: "people with schizophrenia suffer x,y,z. They are not u,v,w. We want to help you get this message out! Please tell us your experience relating directly back to x,y,z and how u,v,w isn't true." I mean, you have given direction, but haven't specified precisely what stigma or myths may be.

I think with the more open honest questions like you have posted, we are then given a floor upon which to give real-world experiences, such as that already given on the first of your links (I find it very fascinating that the contribution given directly to the forum so far is one of societal pressure rather than internal conflict.)

It's hard, because I still do feel strongly that your two posts rely strongly on pressure to share these stories. What might we do to make us feel heard/supported without that pressure? Is it possible to address our need for support without us being there to help others with their prejudice?

I am struggling today. I do apologise. This might all be a bit back and forth and topsy turvy, I'm trying to think and write during day and the noise levels of my two toddlers is beginning to get me incredibly snappy.


I think, the more we discuss all this, I am beginning to see there are very specific contexts/environments in which sharing is inappropriate.
I think I read your posts here and see them as helpful given that the environment is one of a support group, first and foremost. The education side of it comes from SANE using these forums to amplify our voices, quite directly. They don't paraphrase (or if they do it is just to introduce the topic), they link straight to the forum discussion or an article penned by someone directly affected or experiencing whatever the topic may be.

I think my frustration comes more in the environment of social circles, and especially work. How many workplaces tell their employees very directly what support is on offer, and better than that, asking for involvement from us as to what support might look like. It seems never to be a flexible discussion with genuine interest in hearing the voices of those marginalised. It seems more of an "We are helping, now be helped".
Schools. A great many of illnesses have an onset age between adolescent to early adult years. My experience with schools awareness campaigns was one fixated on types of illnesses, the differences between them, and how to 'spot' friends that might 'need help'. Not lived experience. Not anything on how broadly mental illness may have impact on schooling life. Not much on how to broadly include people with illness. A big ask, given the role model is teachers, and teaching in Australia is a regimented inflexible practice for the most part. There is little celebration of difference full stop.

I guess workplace campaigns can be very similar. It's all about being able to identify and isolate those that might be ill. Few campaigns successfully work around inclusivity. I have seen Beyond Blue making some changes in this respect, last year's RUOK? day looked like it was geared toward providing tools to implement in the workplace (some very practicable ones too, such as 'choose you most likeable employee, not your most awarded or highly trained employee, to be the workplace advocate/mediator for mental illness.'). Unfortunately, that message seems to get lost by employers, who simply buy the wristbands, set up the charity collection points, and throw up a few posters that in summary exclaim 'depression and anxiety exist'.

So in such examples, we (the ones experiencing) are being silenced, and are having that white noise amplified in attempts to help. The posters all say to share, my workplace agreement/offer of employment tells me I have access to services, but this is it. There is no societal, no community support. The community here on these forums, it exists amongst the wider community. It exists in everybody's everyday life.
Perhaps there could be a designated person within a workplace, to take complaints of prejudice/stigma, and action it in the same way OH&S would a tripping hazard.

Not sure I'm making sense at all today. The joys of schizoaffective lol. It is a tricky conflict which doesn't help.

I think ultimately, yes, sharing does have merits and is an important part of everything. But asking for stories does not mean we must share, or that help will always be received well. Just like all things in life that involve listening, we just need all be aware that if we've found ourselves in a listening role, that we do truly listen and acknowledge that voice. So if one day I say "argh, enough of the thanks, I feel like you're martyring me for feeling neglected, your missing the point", then people recieve the feedback and respond appropriately. But if the next day I or someone else wants to vent in hopes to find others to relate with, then we respond to that differently.

I am very aware I may have not addressed your questions at all @NikNik, I may have gone all political advisor and gone in semi-related tangents haha. :(. Please ask further questions!

Sehnsucht x

Hi @Kurra
I hear your frustration and dilemma!

Hope you've found ways to work through any issues that may arise.
Not sure if it helps, but my experience has taught me to take time and to question things that don't sit right as they happen. If I had my time again with Camp America, I'd have forwarded on my rejection letter to the psychiatrists that cleared me, and ask them to please add to my "Oh no you did not just do that!" response.

Excited for you regarding your job application. I really hope it has gone well in the end 🙂

Sehnsucht x