Friends, Family & Carers Forum

[Faith-and-Hope]

That’s fantastic @Bow - not the bad experiences, but your intent to turn them around to improvements in the system.

I know I felt invisible in our situation without a diagnosis, or worse, I was disbelieved.  I remember one doctor saying, “if it’s that bad, why don’t you just leave ?”.  So incredibly unhelpful when you’re trying to hold the marriage and family together and seek a medical intervention.

[Bow]

Yes @flybluebird 

I started at Tafe last year, I enrolled in health administration cause I thought maybe that’s something that I would like to do. I previously worked in the community services field but wasn’t sure I was prepared for the stress of that again! But now that I’ve had some experience with peer workers, I’m thinking that maybe that’s something I’d like to look into. Maybe having a peer worker that has some experience with EDs would be helpful, cause all the ones I’ve come across have zero knowledge. 

I’d really like to advocate for change in how EDs are viewed as well and I’d like to see more gps have a better understanding. If gps have better knowledge then perhaps EDs can be caught earlier on and recovery will be much quicker. I had 2 gps dismiss me when I went and asked for help. I then ended up in hospital very ill. And for all major hospitals to have ED beds, we can often be medically unstable and need that additional medical support. 

Is all of that asking for too much!!?

[Bow]

Oh yes @Faith-and-Hope  some… a lot of medical professionals have no idea really. 

when I first sought help for my ED, I had 2 gps print out a blank mental health care plan, signed it and told me to go home and google someone. Neither of them asked me any questions. 

And I’ve lost count the amount of professionals that have told me to go home and ‘just eat’. If it was truly as simple as going home and eating I would not be out seeking help. 

I have since found the most amazing gp, who has put me onto an incredible dietitian, a top of her field eating disorder specialist psychiatrist- she gave me an official diagnosis which has enabled me to get the support I need. My gp goes above and beyond for me. But not everyone has this sadly. 

[Faith-and-Hope]

❤️ @Bow …..

[flybluebird]

I’m very sorry to hear that you both @Bow  @Faith-and-Hope have had those kinds of responses by professionals who we really do expect to have more understanding and insight into how to best help. 💔 Or at the very least help guide you in the right direction.

There are becoming more & more specialised peer worker roles emerging as the profession evolves. I have seen already ED specific peer roles advertised. So the ability to have that support to others would be incredibly valuable. All the best with your aspirations around that @Bow 💛

[Former-Member]

It does seem to me as well that peer support workers are a good idea.

 I think sometimes GP’s can get a bad rap because they are faced with complex issues that really cannot be sorted out in a regular appointment time. Not just mental health issues. I did not get my physical health issues sorted out until a doctor actually had me come back for a long appointment. I actually did not know that you could book a longer appointment. This might be something to remember.

Also I have great respect for the insight it takes to decide you need help and the persistence it takes to find the right kind. In some ways it is easier now because of the information available.  Trying to find what is appropriate to your own situation is the challenge. 

At the end of the day you can’t really help someone who doesn’t have the insight to understand there is a problem. So all the resources in the world won’t help a recalcitrant sufferer. But at least as long as there are resources and generous peer support workers there are more pathways to help.

Thank you for shining the light of hope.

[Rhye]

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But now that I’ve had some experience with peer workers, I’m thinking that maybe that’s something I’d like to look into. Maybe having a peer worker that has some experience with EDs would be helpful, cause all the ones I’ve come across have zero knowledge. 

I’d really like to advocate for change in how EDs are viewed as well and I’d like to see more gps have a better understanding. If gps have better knowledge then perhaps EDs can be caught earlier on and recovery will be much quicker. I had 2 gps dismiss me when I went and asked for help. I then ended up in hospital very ill. And for all major hospitals to have ED beds, we can often be medically unstable and need that additional medical support. 

Is all of that asking for too much!!?

---

No, no that is not asking for too much, @Bow.

Kudos to you for stepping up as you do here in the community and providing support in the way that you do, even when things are really hard for you. You flex such strength and resilience, not to mention the greatest peer support worker gift – kindness.

I think you would be an amazing PSW in the ED community. I have no doubt that if this is the path you'd like to follow you'll get there, and when you do you will be an asset to a team and all those you support 💙

[Bow]

I can’t imagine how difficult a job a gp has @Former-Member ! They are face with such a wide variety of health issues every single day. 

i know that a lot of gp clinics now days use an app service, where you can book appointments via an app, including long consultation. When I started with my new gp, they booked a long consult for me, but then she asked me to come back in a couple of days later for another long consult to discuss just my mental health issues. Good gps are hard to find, but they certainly are out there. 

[Faith-and-Hope]

The lines can be so badly blurred too @Bow @Paperdaisy @Rhye @Former-Member @flybluebird 

Ex’s ED masqueraded as a healthy and dramatic lifestyle change, if you didn’t know what else he was doing behind the scenes, and if you didn’t recognise other “tell-tale” aspects like being obsessive-compulsive to the point of rages and injury, linking eating to exercise achievements in a punitive way, missing appointments and engagements, functioning as a satellite to the family, etc.  He had everyone fooled, and I was seen as the wicked witch trying to invalidate his achievements …… how is a GP supposed to work all of that out ?  

Ours eventually did, too little, too late, but I can also recognise that ex was an extreme case.  The ED was an addiction and it shape-shifted from one form to another.

it is sooooo important to have that lived experience aspect to working with ED sufferers.    Your lives experience is babies you to see through the mask and to recognise signs and patterns, but I am sure it is confronting too.  It means that your ED has been warrior-training you as a part of your survival experience.

Go you ❣️

[ShiningStar]

Hi @Bow and @Paperdaisy 

I just wanted to reach out to say thank you so much for creating such a wonderful space where people living with an eating disorder and / or caring for a loved one who is living with an eating disorder, can reach out for support 💜

So very sadly in my experience, there are still so many myths and misconceptions in relation to eating disorders and as such, I absolutely love how you have so sensitively and respectfully raised awareness about this particular mental health condition 💜

With this in mind, I just thought that I would take a moment to share some of my story with you 💜

Many years ago now, I was diagnosed with an eating disorder not otherwise specified. Although I understood what this meant from a theoretical / clinical perspective, I still wrestled with the connotations associated with the phrase ‘not otherwise specified.’

For me, this particular phrase communicated that my diagnosis wasn’t as ‘real’ or as ‘valid’ as other peoples. As such, I felt as though I was living in some sort of limbo. On the one hand I wasn’t considered ‘unwell enough’ to have a ‘real’ eating disorder, but on the other hand, I was considered ‘unwell enough’ to have some sort of diagnosis. As such, I found myself trapped between two different worlds and to be honest, I didn’t feel as though I belonged in either one.

As a result, I found myself frantically trawling through large amounts of information, in the hope that I would be able to find something that would reassure me that I was living with a ‘legitimate’ eating disorder.

However, much to my distress, there was very little if anything written about eating disorders not otherwise specified. For example, they weren’t mentioned on social media, or in the magazine articles and / or the documentaries that claimed to shine a light on eating disorders.

Therefore, instead of finding the evidence that I needed to reassure myself that I was also living with an eating disorder, I found the complete opposite. As such, these omissions communicated (correctly or incorrectly) that society didn’t overly recognise that the eating disorder that I was living with was significant or legitimate.

Furthermore, because so many people weren’t familiar with the diagnosis eating disorder not otherwise specified, my diagnosis was often viewed with scepticism, suspicion and intolerance and I can still remember being told ‘not to be so ridiculous’ when I approached a family member for help.  As such, I received very little if any support or empathy in relation to what was happening for me.

Similarly, there were other people who (despite the fact that they believed that I was living with an eating disorder) completely minimized and dismissed my experiences, which in turn reinforced my beliefs that the eating disorder that I was living with was insignificant.

As a result of my experiences, I felt incredibly fraudulent and as though I was masquerading as a person who was living with an eating disorder! I also felt incredibly guilty reaching out to organisations that specialised in supporting people who were living with an eating disorder, as I felt that I was taking valuable resources away from people who were living with ‘legitimate’ eating disorders.

After years of participating in therapy, everything changed again, when several years ago, I was diagnosed with Body Dysmorphic Disorder. However, despite this, I still wrestle with the same disordered eating behaviours that I did when I was initially diagnosed with an eating disorder not otherwise specified.

Although I still have a long road ahead of me, I’m hoping that one day (in the not too distant future) the mental health conditions that I live with, won’t impact me to the same extent that they do today 😊

Thank you so much again for all of the time, care and thought that you invested into creating such a wonderful resource for our community 💜

Take kind and gentle care of yourselves,

ShiningStar 💜