Friends, Family & Carers Forum

[ShiningStar]

Hi @Bow 

I just wanted to reach out to say that I think that you would be an amazing advocate - especially in relation to creating changes to the way in which we care for people who are living with an eating disorder 💜

As such, I hope that one day your recovery journey leads you to a place where your dreams come true 💜

In the meantime, I just wanted to say thank you so much again for sharing your story and strengthening people’s understanding about how to care for a loved one who is living with an eating disorder 💜

Take kind and gentle care of yourself,

ShiningStar 💜

[Paperdaisy]

@ShiningStar Thank you so much for sharing your story. It is very real and important, you deserve to be heard and you deserve support. I'm so sorry to read that you haven't been heard in the past as I think the fear of not being believed is really invalidating and is what leads many people to suffer in silence. By speaking up here you help others to feel less alone and validate their experience so thank you so much 🙏

I understand you are still on a recovery journey and it's a process but you are moving in the right direction and it sounds like you are doing the right things. I hope you will keep advocating for your needs and get the help you so deserve. Thank you for being here and supporting others the way you do. You really are a shining star of hope and we value your words 💝

[Paperdaisy]

I agree @ShiningStar , @Bow has a lot to give 💖and will get there!

[Faith-and-Hope]

💜 @ShiningStar 

I can relate to what you are saying.  Depending on your viewpoint ex’s ED is viewed as “ED not otherwise identified”, and I believe this added considerably to our invisibility as you have described.  

[Bow]

Thank you for your kind words @ShiningStar  and thank you for sharing some of your story in this space. 

Im really sorry that this has been your journey so far, with so much invalidation… should never underestimate the impact it can have on a persons experience. I too have a ‘non typical’ ED diagnosis, yet it’s far more common than the typical type! Yet another thing that needs to change in the ED community- the words used to diagnosis people. 

wishing you well @ShiningStar 

[Former-Member]

Hi @Bow , I just wanted to jump in and say I agree with the others, that you would make an amazing advocate 😊 Lived experience like yours is so valuable to be able to better shape the supports that are provided to others.

Hearing your thoughts and hopes made me think of this video - I'm not sure if anyone's seen it? It's a talk by a Nurse Unit Manager at a new, specialised residential ED recovery centre in Australia. It's a story of her own complete recovery from an eating disorder, and now she's using her experiences to contribute to the recovery of others, which is all so amazing to hear. 

Content warnings: These parts might be triggering or upsetting, and anyone reading may prefer to skip them:

• Specific behaviours related to eating disorders: 0:54 - 2:33
• Suicide attempt method: 5:42 - 5:48
• Insufficient quality of care / upsetting & traumatic healthcare experiences: 6:23 - 6:55

Everything is described firmly in the context of recovery, though, with a purpose of providing hope for a better future 💜

[Bow]

Thank you @Former-Member  

and thank you for sharing that video. Have just watched it…, such a mix of emotions hearing her story, where it started, her journey to getting help and the frustration over the inadequate care in general mental health wards- of which I have experienced a number of times. 

I have been following the building of Wandi Nerida and have had a good read of the info. It’s just such a shame that unless people apply for and are granted scholarships, it would be out of reach for the majority of people ($75,000 for an admission). I know that ED treatment is so specialised, your general psych wards are not equipped, they miss keys areas in treatment and then medical wards are also the same, they fill some of the gaps that the psych wards have but then have their own gaps. There is no level ground. but there needs to be more public funding for inpatient treatment. Maybe Wandi Nerida will lighten the load on the limited public treatment places. 

[Former-Member]

Oh dear @Bow I was actually not aware that admissions cost $75,000- that would simply be out of reach for the vast majority of people 😔 If there aren't enough scholarships available for the people that need them, there's a glaring equity issue there. I hope that with time there can come to be substantially more funding available so that everyone can get the support that they need ❤️ We need nothing less.

[Bow]

Yea @Former-Member  so out of reach for so many. Even with private health insurance, they say that there is still $50,000 out of pocket expenses. I wonder how they justify that amount of money for a 60 day stay….. 

anyhow, maybe I should just write to my local member and lobby? Is that the word? For more public funding. We have a fancy new hospital being built here…. Be nice if there was something included there. 

[Former-Member]

That is certainly an idea @Bow! 💗 One person at a time, one voice at a time, individual droplets becoming a sea of voices advocating for change, I feel is how change can ultimately be made

It may feel like an overwhelming aim if you're feeling like you're doing it alone, so if you haven't already, you could reach out to an ED advocacy organisation for support in advocacy and to be connected to others with the same goals 🌻