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How do you advocate for your loved ones as a friend, family member or carer?

Unknown userMember16 Sept 2022, 10:42 am AEST

How do you advocate for your loved ones as a friend, family member or carer?

When have you advocated for yourself or a loved on in your care within the mental health system?

For many of us, there will be a time when we have to advocate for ourselves or others within the MH system. 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.

This is made slightly more complex when we’re caring for others. Historically, those experiencing mental health crisis have had their self-determination taken away. And as carers, as much as we can, we want to amplify the voices and wishes of the ones we care about.

So I’d love to hear from the community

Any questions or challenges you’ve had in advocating for yourself or loved ones
How you’ve advocated for yourself or loved ones 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!

I also wanted to tag a few of our carers to kickstart the conversation @FloatingFeather @Determined

@Emily82 @tired_sisyphus @BPDFamilymember @Krishna @maddison @Shaz51 @Faith-and-Hope @ExhaustedCarer

6 replies

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In response to: How do you advocate for your loved ones as a friend, family member or carer?

maddisonSenior Contributor16 Sept 2022, 11:09 am AEST

Re: How do you advocate for your loved ones as a friend, family member or carer?

Hi @Former-Member & everyone. I love this thread. Such a great idea. Thankyou for tagging me.

On reading your story, the thing that stood out most to me, was how you 'began questioning how much you really knew yourself.'

You described this perfectly.

I have felt this way when trying to advocate for my own health care, as well as my friends.

In my experience I have interpreted it as power difference - there also seems to be general ignorance. Not necessarily anyone's fault. It seems that two sides are coming from different angles & neither understand the others position.

I have certainly become much better at advocating & trusting my own perceptions. I do mostly still find myself battling against professionals though. I don't really feel like I'm in the drivers seat, yet.. Maybe, one day!?

In response to: Re: How do you advocate for your loved ones as a friend, family member or carer?

Unknown userMember16 Sept 2022, 12:37 pm AEST

Re: How do you advocate for your loved ones as a friend, family member or carer?

@maddison thank you for sharing your own experiences! Yeah, it can be really difficult to get to the drivers seat!

Are there things you've down to feel more confident in advocating for yourself or trusting your own perceptions? I'd love to hear them and I reckon it could be great for the community too!

In response to: Re: How do you advocate for your loved ones as a friend, family member or carer?

maddisonSenior Contributor16 Sept 2022, 4:06 pm AEST

Re: How do you advocate for your loved ones as a friend, family member or carer?

Oh, this is such a great question @Former-Member thanks for asking me.

I'm not sure how to describe the catalyst for change. Maybe it was small steps, that at the time seemed insignificant. Whereas, now I feel like the results, of becoming a better advocate are identified more easily.

Listening to my own 'feels' is a big one for me. Not being so quick to dismiss my reactions, as wrong!! Each time I acknowledge what I am feeling, gives me more strength & confidence. In a sense, I have to build trust with myself.

Communication. I try to place lots of importance on communication. Regardless if I am doing it well! At least by being involved & expressing my position I feel like it gives me a sense of stability. This might mean writing a paragraph of notes before I go to a doctor's appointment etc. Or keeping communication open with my friends treatment team, as his carer. There is also a time to step back, & feel confident in not doing anything, I think.

Of course, the interaction with other members on SANE really has been huge benefit to me. I can recall feeling unable to express myself in the past, as no one could possibly relate, or understand what I was going through. Chatting online with other carers, & members with lived experience unveiled an entire world to me, that I was a part of! Isolation doesn't promote expression & confidence. Knowing I'm not alone gives me sense of confidence to be a better advocate. Bouncing ideas off of one another, & reading many stories with similarities to mine , has diluted the need to question my perceptions.

Overall, focusing on the parts of myself that I know, recognising & praising myself for my strengths & successes. Noticing my weaknesses with less embarrassment & judgement. I think, I cannot rely on someone else to make me feel good about myself, or define my character for me I have to learn to do it for myself. What if they are wrong?!

I guess that is what advocating & trusting ones own perception is about for me. Little steps of self belief over time...xx

In response to: Re: How do you advocate for your loved ones as a friend, family member or carer?

Unknown userMember16 Sept 2022, 4:21 pm AEST

Re: How do you advocate for your loved ones as a friend, family member or carer?

@maddison I love all of these! Especially

Communicating, even if it's not perfect! I also write notes before doctors appointments because I forget what I want to say!
"I cannot rely on someone else to make me feel good about myself, or define my character for me I have to learn to do it for myself. What if they are wrong?!" What a powerful idea!!! I'm going to start thinking "What if my counsellor/psychiatrist are wrong?" especially about my weaknesses!

Thank you for sharing ❤️

In response to: Re: How do you advocate for your loved ones as a friend, family member or carer?

maddisonSenior Contributor16 Sept 2022, 5:38 pm AEST

Re: How do you advocate for your loved ones as a friend, family member or carer?

Your welcome @Former-Member thankyou for the feedback. I really liked your take on the counsellor/psychiatric 'evaluation.' Exactly!💜

In response to: How do you advocate for your loved ones as a friend, family member or carer?

amber22Senior Contributor20 Sept 2022, 3:15 pm AEST

Re: How do you advocate for your loved ones as a friend, family member or carer?

Absolutely agree that this topic holds so much meaning @Former-Member! Thank you for sharing your experiences @maddison, it definitely goes to show that this is something that is widely experienced! ❤️

It can be really disheartening when you feel as if you aren't being properly listened to, or supported regarding mental health of your own, and it becomes even more complex when a friend/family member/carer is experiencing this too.

Thank you for opening up about what you experienced with being dismissed by professionals. I think a lot of people can relate to this. I definitely resonated with your story as I found it took years of courage for me to finally speak up to professionals about what I truely felt I was experiencing, rather than what I was being told I was experiencing. It's comforting to know that I was not the only one feeling this way. Trusting your gut when it comes to anything (but especially your health and wellbeing) is so important. No one know what you are going through/feeling better than yourself!

Warm regards,

Amber22

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