How do you advocate for yourself in the MH system?

[Former-Member]

When have you advocated for yourself or our community within the mental health system?

For many of us, there will be a time when we have to advocate for ourselves with a medical professional. It can be difficult and really scary. So I wanted to make this thread to gather all of our experiences, questions and challenges so we can learn from each other.

Advocacy has its roots in the social justice movement, and is all about using your voice to communicate to others a particular goal, promote your self-determination, or to support a social movement.

Whether there’s a treatment we want to try or say no to, when we have our own goal for recovery or we’re challenging stigma, knowing how to communicate and ask for our needs is crucial.

So I’d love to hear from the community

• Any questions or challenges you’ve had in advocating for yourself
• How you’ve advocated for yourself in the past and any tips for others

I also wanted to share some resources of this

• Topic Tuesday Discussion on Advocacy Tools
• Our consumer Place resources on advocacy and more
• A video on how the Intentional Peer Support Movement started and it’s connection to the Mad Movement and Consumer-Survivor Movement

For me, for years I struggled with being dismissed by professionals for physical and mental health stuff. Whether this was in diagnosis, dismissing my concerns or telling me that my ideas for what might help me was silly. A lot of this dismissal is also related to different social identities like gender, class and ethnicity and the “power” given to “professionals”. Over time, it left me feeling pretty disempowered and unsure how well I knew myself. Slowly, I gained confidence to gently disagree with my therapist. It led to us having an honest conversation about what worked for me. All of a sudden, I was in the drivers seat of my treatment and we were able to find strategies which worked for my neurodivergence.

We will all have different experiences, but I’m hoping we can learn from each other to all find our own voices!

Tagging out wonderful community guides to kickstart the conversation 

@Anastasia  @AussieRecharger  @BPDSurvivor  @Faith-and-Hope  @HenryX  @jem80  @Judi9877  @NatureLover  @outlander  @Shaz51  @ShiningStar  @Snowie  @Hams  @wellwellwellnez  @Zoe7  @Aniela  @Boo13 @maddison  @pinklollipop15  @Eve7 @Daisydreamer 

[hanami]

Great post @Former-Member , about such an important topic!

[chibam]

Hi @Former-Member , @hanami !🙂 Great topic!

I'm well versed in these dillemmas, but I'm afraid I can't offer much helpful insight. I was stuck for years with a therapist who simply didn't want to listen to me and/or help me achieve my goals. No matter how much I kept telling her what I wanted and didn't want, she refused to listen.

I ended up learning, all too late, that there was never any point to going in to therapy in the first place, as therapists don't provide  actual real-life help for patients' problems, which was what I needed. (At least, technically they are not supposed to provide real help, although a select few apparently flout the rules of their profession and actually do).

So now I can only advocate for changes to the system, to help reduce/prevent the sort of ordeals I went through in therapy, and to push for the creation of a system that actually does give people the help they need.

This has become increasingly difficult due to the hazy jargon that is often thrown about these days such as "person-centered treatment", "missing middle" and "psychosocial support", which confuse me as to whether or not the sort of support I've been pushing for actually has being created; is in the process of being rolled out; or is still not on anybody's radar. And even if I am covered by one of the above, where do I go for that sort of treatment? I can't find any local "psychosocial support" or "person-centered treatment" clinics in the yellow pages.

I'm at a loss to understand where we are today, which makes it increasingly difficult to voice any meaningful opinion about what needs to be done for the future.

Other difficulties I've come across in advocacy have been the frequent hints I've gotten that nobody actually reads what I have to say, or that they don't want my grievances & views to be voiced at all. This has taken many forms, from final inquiry reports that seem to completely ignore the issues I tried to raise; to the concealment of a submission for an unreasonable length of time (while other submissions dated much later then my own got processed much earlier); to having my submissions, or significant parts thereof misplaced, and on one occasion, mis-assigned to a completely unrelated inquiry.

Generally speaking, the establishment wants me to quietly disappear. There's been too much repeated neglect and mishandling of my input to reasonably come to any other conclusion.

That can be a real sucker punch at the end of the day, especially when you go to so much trouble and personal grief, to bare your soul in hopes of actually provoking some meaningful change; only to see nothing whatsoever come of it.

[Former-Member]

@chibam, it's so important to talk experiences like yours (and others who have similar experiences!)

I think it's phenomenal that given what's happened to you, you still put the time into trying to improve the system despite not knowing if it's making a difference. And I feel like change is not fast enough, but I hope that overall there is some change we can all see and benefit from. Sounds like you've been so determined in this. 

And I think even deciding that therapy is not right for you is a form of advocacy. Especially in a world where that is the first thing recommended. Seems like you have really defined for yourself what works. 

[chibam]

---

@Former-Member wrote:

@chibam, it's so important to talk experiences like yours (and others who have similar experiences!)

I think it's phenomenal that given what's happened to you, you still put the time into trying to improve the system despite not knowing if it's making a difference.

---

Thanks, @Former-Member !😊🤗

---

@Former-Member wrote:

And I feel like change is not fast enough...

---

I often feel that way, too. Frustration and even fury are such instinctive gut reactions to slow progress, aren't they? Especially when you have to confront the reality that your mortal, and there's a limited timeframe for you to get your happy ending; not just in terms of getting there before you die, but also in terms of reaching certain milestones before the various ravages of age (both biological and cultural) irrevocably close certain doors on you.

But then I think that hasty change would be likely to do more harm then good.

It's so easy to get so caught up in our own woes that we forget that we have to share this world with other people; and that in haphazardly bulldozing the barriers to the outcomes we want, we may well be destroying things that are precious to others.

The society I want to live in is certainly not the society that many other Australians would ever want to live in. Right now, the world doesn't suit me very well at all, and I'm miserable about that. So what's the solution? Should our leaders take pity on my plight and immediately take a sledgehammer to the frameworks of society that keep me from my dreams? That's a very enticing fantasy, from my point of view; but what about the people who were living happy, comfortable, meaningful lives thanks to that societal framework. Now I'm happy and fulfilled, and they've suddenly been cast down into a world that doesn't suit them; that doesn't allow them to thrive and give them connection, meaning and comfort. Peter's been robbed to pay Paul. How is that fair?

So yeah, I would love to wake up tomorrow and find that the world - and the mental health system - has changed overnight to give me the happy life I've always dreamed of. But, in fair and level-headed terms, I know that for change to be done properly and fairly, it will need to be a methodical process, and therefore almost certainly a painfully slow one. I can't say I'm happy about that, but then I probably wouldn't be able to sleep easy knowing that my happy ending had come at the expense of someone else's misery.

---

@Former-Member wrote:

And I think even deciding that therapy is not right for you is a form of advocacy. Especially in a world where that is the first thing recommended. Seems like you have really defined for yourself what works.

---

I feel like I might need to clarify that I haven't so much discovered what works for me as I've learned what the mental health system means by "therapy". My understanding of what the mental health system actually peddles was woefully off-base before I'd actually gone in to treatment. As you say, I think that it is badly mis-marketed by the media, numerous organizations, and the general public.

When your depressed/suicidal about being single, or depressed/suicidal about being unemployed, everyone just tells you to go off to therapy, because "therapy really helps". So, naturally you just assume that the therapist is first and foremost going to set you up with a great boyfriend/girlfriend, or a great job. It's only when you get run through the system that you learn they don't do that at all.

I just wish that was clearly clarified, so people who are hanging out for actual real-life help could talk about other options immediately, before having to learn the hard way that therapy doesn't mean what they naturally assumed it to mean.

[MaryK]

I’m a consumer with lived experience and had to learn through trial and error, plus easier to advocate for others than myself given my trauma history. Peer workers can be great with helping to advocate or guide on self-advocacy, and some nurses can be great advocates. I now do committee work to give the consumer voice with other consumers to improve the experience for us, those navigating the system and supports. Hth and will read/reply more fully when up to it

[Wolfman]

@Former-Member
Hi, we can always felt stuck and overlooked in the mental health system. Doctors and therapists do hold some power due to the intment knowledge they have over you and it can feel as if you are just a passenger along for the ride.
You are the individual that lives inside your mind and might not benefit from 70% of therapies i.e. CBT, DBT, ect. You have a voice, so use it in discussions with your therapist. Don't always let them direct conversation away from what is really causing you issues. Before your session, write down your main concerns and what you need do do to help you overcome those concerns. Putting it in writing will help you.