cancel
Showing results for 
Search instead for 
Did you mean: 

Re: Nothing is changing

@Eden1717  and @Tiny_leaf  I wanted to congratulate you both on such an open and insightful conversation last night, and I wanted to respond to a few things Smiley Happy

 

Eden – I have been told by a psychiatrist that they don’t like diagnosing personality disorders too. I don’t remember much of that conversation now as it was a few years ago but that was the main point I remember.

I am not surprised that psychosis would present differently with someone with autism. And as you said autistic people have sensory abilities and can pick up on more faint smells, noises etc.

 

Consistency with professionals is definitely very helpful. I know for me, now that I’ve been with the current psychiatrist for quite a while, we have a good understanding of me and how things are for me. And she’s a lot more open to changing medication now that she knows more about me and my situation. Whereas when I first saw her, she didn’t want to change anything straight away. Which I was annoyed with at first, but now I appreciate, as she medication she has me on now has just given that bit extra of a boost and I’ve been told by my GP and psychologist I seem brighter and bubblier which makes me smile as it was who I once was.

 

In my experience, it can both be helpful and a hindrance to have an idea of what you might have. I have known/heard that this can be a negative for some professionals to have a client say I think it’s xyz. I’m not discouraging you from researching or anything like that, but I guess I just want you to be mindful that sometimes it’s not taken kindly by some health professionals - which has been my experience.

 

 

Tiny_leaf that first sentence makes no sense to me 🥴

But I can see how your thought of “am I hallucinating or is it just a really far away noise that no one else noticed?" is something that would occur.

 

The fact you’ve been refused treatment makes me sad Smiley Sad I hope you were/are able to find another place to help you. It is so hard when you’ve been treated poorly by health professionals, and I want to say that it’s a reflection of that health professional in the way they treated you, and has nothing to do with you x

 

Being treated for different mental health conditions and having overlapping symptoms sounds so frustrating! It’s kind of strange to me that you’ve been turned away for having no diagnosis (confused face)

 

 

Re complex cases, I wonder if either of you have searched for places who specialize in complex cases. Being an anon forum I can’t specify places, but I do know there are places that do focus on more complex cases than milder ones. And some of those will see patients via video link if they are far away – like the place my psychiatrist works, I see her via video at the GP’s office.

 

I hope that this reply comforts you a little and you feel heard, that has been my goal for this post Heart


Remember you're amazing just as you are Heart

Re: Nothing is changing

@Tiny_leaf  It can be a real struggle trying to figure out what is going on. and sometimes it is comforting to know that X is what is wrong and that you aren't "just making it up". it is hard though because with mental health being so underfunded even if you have a name that doesn't mean services are available in your area or even at all in Australia.... you can sometimes get into private hospitals in other states I have done that before but if you don't have health insurance then it is likely not an option. but you still need referrals and such for that. 

 

as for overlapping symptoms it really can get complicated i have been given over 11 different diagnoses over the years and now I tend to just go with the top 4-5  when dealing with professionals although one of my diagnoses can cover 3 different disorders technically so i guess it is more like 7-8 if you look at the issues.  either way even with all those labels it still hasnt given me more options than i had before. if anything it just made it harder for me because people stop looking at you as a person and start looking at you like the labels. still everyone is different. 

 

oh the other thing i meant to say before was that 17 is a HORRIBLE age for accessing services because they dont want you in adult or child services and you get this gap between 16-18 where there is literally no services dedicated to that age group. so some of the frustration you might be feeling with people not taking you could be related to that. is there an issue that is bothering you the most? like is it your mood or the psychosis stuff? or something else? just wondering cause maybe we could talk about things for those issues if you wanted.... but its just a thought and there is no pressure. 

Re: Nothing is changing

@Bee  had to do a separate post cause it was too long for me to remember everything Smiley Very Happy  I think they dont like to diagnose them because it is kind of a complicated process and often requires knowing about behaviours over a long period. and as for consistency it is very important for some issues because a lot of psychs dont really understand how things are for you until they have been around when stuff happens. i remember my psychiatrist didnt believe i was ever manic (my psychologist had told me i was) because he hadnt seen me like that but he was away during an episode that lasted 4 whole months and i was in hospital for 2 of those. but then he did ''catch'' me in an episode and was like oh ok yeah. so it can be frustrating especially when the psych insists on seeing for themselves instead of just trusting you. and yes professionals often dont like you making suggestions even if it ends up you were right they still seem to hate it. 

 

I have looked and looked and looked for services all over the country and even looked at international options and there was nothing that covered all my issues or was appropriate for me. most places specialise and because i have so many different types of issues there is always one that means they wont take me or dont think i am the right fit. for example when i was trying to find help for my eating disorder the ONLY eating disorder service in my state told me they wouldnt take me because i was too complex and that i had to find other services and when i asked them where i could find those (asked about the whole of aus) they said they didnt know of any that i would be a good fit for. 

Re: Nothing is changing

Hi @Eden1717 and @Tiny_leaf,

 

I think this is a really important conversation and I can see you have both raised some really important gaps that are currently existing in the mental health system at the moment.

 

@Eden1717 I would be interested to hear your thoughts on this one. I am hearing from your post that diagnoses, and having a number of diagnoses has made accessing services even more challenging, with even some professionals not hearing the diagnoses made by others. Have you had any experience with the My Health Record at all? And if so, have you found this helpful at all in giving the background of your experiences and diagnoses to professionals? 

 

I also hear you around the accumulation of diagnoses over time; this seems to be something happening quite a bit when navigating the mental health system. Like you said everyone's experience of finding a diagnosis helpful or unhelpful is so diverse Heart 

 

@Tiny_leaf It has been really informative for me reading this post about some of the experiences yourself, Eden1717 and so many other forum members are having accessing services, and definitely gives us a lot to think about in terms of what we can all do to support each other when seeking professional support is complicated or inaccessible. I just wanted to let you know I hear you Heart Eden1717 has mentioned being open to exploring and talking through some of the things you are most concerned about- so much support and compassion here Heart 

__________

Check out our community activities calendar for November 2019 here

Re: Nothing is changing

@Bee I've definitely had psychologists get irritated that I "dared" have an opinion about what I have, but for me that's a sign that I need a new psychologist..

 

I'm not having much luck with getting treatment.. I've got a new psychologist and she's really nice but idk if she has experience in the areas that I have the most trouble with..

 

I was more turned away because they couldn't find a diagnosis, though they didn't try very hard honestly...

 

And no... nothing in my state that I've found other than articles on the lack of services for people with complex mental illnesses....

 

I can barley wait till I'm independent enough to "escape" to Melbourne or somewhere else with an actual mental health system. Smiley Frustrated

Re: Nothing is changing

@Eden1717 definitely.. and oh that's good! I might consider that next time I need to be admitted, and since I'm nearly 18 I'll have more choice soon.

 

Wow 11! I've had a fair few but most of them were objectively wrong...

I need labels because I'm terrible at explaining my symptoms otherwise...

 

Yep 17 is the worst! I nearly asked to be admitted into a private hospital a while ago, but its adult only and I really couldn't wait so I had to go to a really bad one that happens to be nearby.

 

And yeah plus the trauma from that plus a few other assorted things, but I feel like I'd need a professional human to talk through that with because it can be incredibly triggering... 

 

 

Ugh that's awful! You shouldn't have to wait for a 'conveniently' timed episode before you get help for it!

And eating disorders really need treatment! That's just.. ugh..

 

For me everyone says that they can't "treat autism" and therefore can't help me. Which is... kinda rubbish because I don't want my autism "treated". Smiley Frustrated

Re: Nothing is changing

@Jess1-RO definitely.

And oh my gosh I swear sometimes the whole system is a gap....

Re: Nothing is changing

@Jess1-RO I have looked into the health record but it sucks and none of the professionals want to use it because it is a huge hassle to work around. also it means anyone and everyone can see it so it gets complicated. for me diagnosis just meant i had less rights because i was "more crazy" it didnt open up a door of helpful options it just made people more inclined to force me into hospital for even the smallest things that i live with daily anyway. but again everyone is different and i think perhaps if i hadnt been dealing with this my entire life I would be so fed up with the crappy system. also there are services to an extent but they are mostly for young people specifically with only mild to moderate depression or anxiety anyone else is basically screwed. and anyone with more "complicated" issues has to fight even harder for the little there is out there. but yes some states are horribly underfunded actually most are even in bigger cities the public system is seriously struggling and professionals get burnt out and leave very quickly because they are forced to work unreasonable hours. some days on the public ward there was 1 nurse to 8-10 patients and the hospital standard is 1 to 4 and this happened often. 

 

when you dig deeper it doesnt surprise you why there is more people with mental health issues every year. it is a system that is collapsing like everything else at the moment. 

Re: Nothing is changing

@Tiny_leaf  I can understand needing a way to explain symptoms i am sort of the opposite i hate using technical terms and actively avoid using them with professionals (but truthfully it is mostly because I refuse to accept that i have these issues on a deep level because that would mean most of my life has been a lie essentially and that is too much for me to deal with right now) but either way i can understand needing a name for the feelings. 

 

it seems like the professionals have hooked onto the autism thing and refuse to look at other issues with you, likely because that is more effort and the services are stretched so it is much easier to say they cant help because that is the "only issue" than it is to do the hard work investigating. 

 

it is frustrating but i have come to terms with the fact that i personally am alone in helping myself with this issue because there truly is nothing else left for me to try. i just focus on each day for now but it is exhausting. 

 

private hospitals arent perfect and most have time limits so they just kick you out even if you arent much better. but they are at least less chaotic. 

 

is there a way you can maybe write down a list of different issues and group them so that you can essentially create a chart of everything and give it to a professional? then perhaps it may help explaining....? also you said you had psychotic symptoms..... what sort of those are an issues for you? you dont have to say i am just curious as different symptoms can be taken very differently by professionals and I wonder if that may be part of the problem for you....  also trauma issues are very real and do need to be addressed and if people arent then they need to start because that often makes other issues so much harder to deal with. 

Highlighted

Re: Nothing is changing

@Eden1717 I don't even know at the moment... nothing feels real so like... I could be hallucinating anywhere between 0 to 100% of the time.

I used to know.

The hallucinations I used to have are honestly too bloody to describe here and I don't really want this revisit them....

 

I did once list every single one of my symptoms. I offered to show the list to the most recent person who misdiagnosed me but she just said she had another appointment and walked off.

 

I'm trying to try one more psychologist because she specializes in trauma plus has a lot of skills that would be useful but it's all complicated