Lived Experience Forum

[MessyMind]

Hi, I'm new to this space and thought I'd just dive straight in i suppose! 

A little background: i have always had high anxiety/panic attacks (diagnosed before my teens) and issues with eating/drinking in front of people. However this only got worse after i had a terrible throat iinfection in my teenage years and have had trouble swallowing ever since. Around this time i was also diagnosed with depression as well.

Some years on: I was finally admitted to hospital after passing out in late 2019 surrounding the above and how it affects my behaviours. The hospital wasn't kept very clean and i was distressed for my whole 2 week stay due to the added lack of compassion and care that i received. I tried discharging myself and was told i "couldn't"? 

Anyway, after this hospital stay i didn't do too badly at looking after myself but there have been times in the past 2-3 years that i have tried seeking further help again. 

Currently: I am at my absolute worst with everything again. I get triggered by things that happen around me that i find hard to deal with. I do have a lot of past trauma, including sexual abuse (which i don't normally mention) but feel safe to do so here. More so though my trauma involves loved ones and their health battles that always affect me the most. When I'm triggered, i can't look after myself and this has been the case again in recent months.

above all else: i feel so very alone. I don't fit the criteria for in-patient treatment, etc as i do not have any issues regarding body image, etc like you would expect in certain eating disorders. I'm honestly so over the laughs i get from professionals, the anger from them too and just overall the lack of support/no access to any kind of treatment.

My body is so hungry but i genuinely can't help myself. I don't know what to do. 

I feel like I've left out so much detail but this in itself is a LOT to me. I share this in hopes of finding out I'm in fact not alone (although i wouldn't want anyone else to battle this every single day like i have for years, I'm now 27 years of age). 

I thank you immensely for taking your time in any way on digesting part of my story. I am always incredibly drained in life lately but hope I'll be able to pick and choose moments where i can touch base on this forum in some way overall. 

with love and gratitude, 

~messymind

[tyme]

Hi @MessyMind ,

Welcome to the forums!

I appreciate your thorough post and sharing your journey, so far, with us. I acknowledge that some of what you have mentioned may have been difficult to share, but I thank you for trusting us enough to share it with us here on the forums.

In terms of eating in front of people, I also have that anxiety. If there's any talk of what I order or what I am eating, I get very stressed out. However, if people just have a conversation while eating, I'm more able to cope with that now - thank goodness!

I'm interested to know if you have seen a dietician about your eating anxieties? I know of 'Fussy Eater clinics' who work with mainly children to help reduce their anxiety around food - PLEASE don't think I'm saying you are a fussy eater! - It's just the name of the type of clinic. I don't know the formal name (sorry!).

So what I'm saying, seeing a dietician who specialises in the psychology side of things may be able to assist? 

Sorry I don't know much more. But I just want you to know that you are not alone in this.

Please continue posting and reaching out here. 

Kindest, tyme

[NatureLover]

Hi and welcome, @MessyMind  , it's good to have you here 🙂
 
I'm wondering, do you have any professional support? Like a counsellor, psychologist or psychiatrist?
 
A handy forum tip is if you type @ and then click on a name in the drop-down box, that person will get a notification and won't miss your reply.
 

[MissLil]

Hi @MessyMind 

I have experienced the same issues with eating and drinking and live in a rural area where unfortunately we have limited access to services. 

I found for me I had to work on my mental health with a psychologist before I was able to eat in front of anyone and still to this day can not eat if anyone mentions or comments about it. 

have you got any support from GP's or a psychologist?

I was lucky enough to have a supportive sister who made people aware not to mention my food or sat near me to reflect any pressure I was feeling. I also found it easier to have small meals or snacks throughout the day to fuel my body and not be overwhelmed by feeling like i was being judged. 

I feel it is important to journal how you are feeling or have daily gratitude's to revise on self love and reminding yourself you are worthy. limiting social media and influences are definitely helpful. 

It is so wonderful to see you have reached out and expressed your story on here. 

[Sophia1]

Hello @MessyMind  and welcome.

Diving straight in shows strength, courage and determination.

It is a strategy I like to use at times as honesty is high on my list of values.

Honesty incorporates being honest with ourselves which in turn leads to getting to know ourselves; leading to helping ourselves. Reaching out.

This is what you are doing, well done especially around this subject that is only in recent years in this country being taken seriously more and more.

I apparently fit under the "finicky eater" category. I only found this out last year.

My food intake now is healthy although I can easily be put off food still after all of these years.

Life circumstances; grief, loss, hurt, stress, anxiety; physical injury; surgery recovery and rehabilitation all impact my appetite.

As a child I would eat a very narrow range of food. About 4 items. I hated milk. I hated smells.

Finicky eaters are a difficult bunch to fit into any box and we all know the world loves boxes and labels.

So I do get the not fitting the eating disorder thinking. We are not doing this because of how we look. The medical world cannot get their heads out of the boxes and look at this differently.

We do not have a disorder as such we have an aversion to certain food.

You also have trauma from sexual abuse and other trauma.

Yes you guessed it I have childhood trauma from moving backwards and forwards from country to country 12 times before the age of 12. I too have piled up trauma which I am not going to overload you with.

I get the feeling all alone with it. Feeling of not being heard. Feeling of being dismissed.

No you are not alone yet at the same time I understand you feeling that.

As for the filthy hospital that has nothing to do with any condition; illness or anything else.

That is a failure of meeting health standards by that hospital.

I would have not been able to stay there either.

Lack of compassion is common sadly as staff are often overworked and expectations from above are too high and out of whack.

A natural human being response.

The person who told me about the finicky eater category being recognised in the medical world, told me about the ARFID FOUNDATION.

I read up about this and wow I thought this is about me. I also am very likely to be on the autism spectrum for other things that all make sense. As would my father have been and now my older son. This was also not picked up decades ago.

I now wish that I could have read this years ago as it would have stopped all of those mind messages telling me that I am so different to everyone else and do not fit in.

I also want to tell you that none of us judge you. I know that I can speak on behalf of every single person who has replied to you. You are not different; you are not weird; you are not failing anything. You are you. Nobody else can be you. Most of all be very proud of you for your courage here.

If you are a researcher here are some links for you and the ARFID page will take you to The Butterfly Foundation.

https://nedc.com.au/eating-disorders/eating-disorders-explained/types/arfid/

https://butterfly.org.au/Get%20Support/Helpline/

The person who told me about this is a mental health nurse who originally worked with young people with eating disorders in UK in the mental health system.

He has now taken up a position in Australia further researching and helping young people in this area.

I am thankful for people like him.

If you do not want to research and read the information, I understand that also.

I hope that I have not offended you as a person needs to want to and be ready to take the next step of seeking help on their own terms.

I sincerely hope that you do well moving forward.

I believe that you are excelling already by arriving here and diving straight in.

You have this.

Good luck and all the best.

If you don't mind tagging me if you are happy to do so, I would love to follow your journey should you continue on here.

You also need to want to share.

Either way this is about you and I want for you what you want for you.

Sophia1

[MessyMind]

Hi @tyme, thank you for your warm welcome and kind words. I'm really glad to know that you're coping better with your own anxieties with eating in front of others. It can definitely be a tough thing to work on. 

I completely understand what your trying trying say, no worries at all! 🙂 

I actually think the term you may be looking for is ARFID - Avoidant Restrictive Food Intake Disorder. A lot of children but also teenagers and adults alike can come under as having this type of eating behaviour too. It seems to be a lot less well known of, compared to other eating disorders.

To answer your question, i have seen several dieticians over the years. Unfortunately they all lacked compassion and patience for my specific situation - i was even verbally attacked out of nowhere by a dietician i was seeing (whom barged in on an appointment i was having with a different specialist in the same building).. it's safe to say this made me cry and I've really struggled to connect with any others since regardless. 

Even so, i actually saw that you replied just before i went to bed last night and therefore today started doing a little research into dieticians that specialise in eating disorders. So thank you so much for this! It's still an avenue I'm willing to look into more as a (hopefully) potential option for treatment! 

Thanks again, 

~ MessyMind

[MessyMind]

Hi @NatureLover, thank your this helpful tip and for your welcome. 🙂 

I previously was having counselling but unfortunately the ongoing costs became an issue for me and i was finding this particular counsellor a good fit for me too. 

My General Practitioner oddly enough doesn't recommend counselling to me when i touch base with him and yet he's well aware of my struggles. 

Hopefully I'll gain enough strength back sometime soon so i can advocate for myself more and actively seek out the support I'm wanting/needing - like bulk billed options, etc. 

[tyme]

Definitely worth giving it a go @MessyMind .

I struggled to find a good psychologist at first. But once I connected with one good one, everything else fell in place. It was totally worth it.

I look forward to hearing how you go with your search. 

Just know you are not alone.

[NatureLover]

That sounds good, @MessyMind .

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@MessyMind wrote:

Hopefully I'll gain enough strength back sometime soon so i can advocate for myself more and actively seek out the support I'm wanting/needing - like bulk billed options, etc. 

---

To find a psychologist, the first step is to visit your GP and ask for a Mental Health Care Plan. This will entitle you to 10 subsidised sessions with a psychologist per year. The only thing is that psychologists are so overwhelmed with demand at the moment that it could take 6 months to get in to see one. But it's a good idea to get on the waiting list now. 
 
You can help this process by googling then ringing round psychologists in your area to ask: are they taking new patients at the moment, what is the wait time for a new patient to start, what are the costs, etc. Then you can take a name to your GP for the Mental Health Care Plan referral. (GPs might not know which psychologists are taking new patients and which have stopped as they are full.)

 
I'm wondering if your previous counsellor who was a good fit is a psychologist, and would come under this plan? 

I hope you feel stronger soon... 🤞

[NatureLover]

Just checked this thread and re-read this...

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@tyme wrote:

I struggled to find a good psychologist at first. But once I connected with one good one, everything else fell in place. It was totally worth it.

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And I couldn't agree more. It took me 18 years to find a good therapist fit, but it was worth the wait, and I've got a lot of healing through it. 

@tyme  @MessyMind