Battles

@AlwaysMyself when the person from the mental health team set up the assessment appointment to call me she only gave me a day so I had no idea what time she would be calling. The morning of that day I had nbn people out here doing work both inside and outside my house, then I had both my mother and my ex show up after that so I was incredibly overwhelmed and not in a good space as it was, then when she rang I just couldn't bring myself to answer the call. She tried to ring again the next day but I had only just woken up and was having a panic attack when she did ring so again couldn't take the call. So I rang them to explain why I couldn't answer and that I still really want support, the person said that someone would call me back which she did only when she called i was out, I answered the call and asked her if it was ok for her to call me back which she was fine with and I told her what time would be suitable, only she never rang back and now it's been 3 days since then. I find it so hard to talk to people whether that's on the phone or in person but I'm trying to do my best so that I can get help. These services don't seem to have an understanding of how much anxiety can impact simply talking on the phone.

You did so well to give feedback, it's frustrating and disheartening to know that so many services like this seem to have a habit of letting people down and I'm not sure if they are aware of the full impact that can have on people that really need support. I'm sorry that you've had that experience sweet and you really deserve so much better.

I don't often reach out for many reasons, I've had bad experiences so many times, I feel like others deserve support more than me, i know there's nothing they can do other than just listen and be there in that moment. I have tried to reach out before things get to that really bad point but in all honesty it's still happened while being on the chat to them and then because we've been chatting for a while before getting to that point they instantly assume it's cos its not helping so bail on me leaving me to pick up the pieces.

I think you have actually done really well @MissGremlin - that you called back, you explained it to them, you tried to get a specific known time for them to call (to help with anxiety and preparation). That is an A+ in my books hun!

Is it any easier to do an email, or a text-based live chat, or a video call? 🤔

I wondering if you could perhaps email them to ask for a specific booked time (due to anxiety and other commitments - I think this is more than reasonable to ask). and if there is an easier way to do it eg via email or live-chat or video... Both live-chat and video can be done via Zoom/Webex/Skype/Teams (voice and camera off being the live-chat).

Would it help to also be able to tee up a support-person to sit with you whilst you take the call? (e.g. your counsellor?) Another great reason for them to scheduled a specific time!

Sorry if I’m too solution-oriented! 😬 Problem-solving is a strength of mine, but the weakness is "turning it off" 😅 when people just need an ear -- so please always tell me if you want me to "turn it off" that is 100% OK. I do that in a some situations where I know people just want to be heard and not given advice — it’s a good thing for me to practice too!

You have done so well with reaching out @MissGremlin . And I’m going to keep reminding you of that because I really believe and honour and respect it. I just wish they were more experienced and equiped to help you, and that they didn’t have a 1hour time-limit that they cut people off at (or 20min I think it was for SCBS?). I wish SCBS would do 1 hour, then I might try them again. 20min is barely time to explain my thoughts & context, so they don’t give me exacerbating comments.

There is so much more I wish I could say when giving feedback to organisations, but outside of a 1:1 interview with them I don’t feel I can. I wish I could tell them how much being let down fuels suicidal desires. But I never want to be perceived as “emotionally blackmailing” or trying to manipulate, which is why I won’t say it unless it was in a proper discussion where they can hear the tone of my voice and have developed the rapport to hear that I am not trying to be manipulative, I am just trying to educate & advocate for improvement and risk reduction.

@AlwaysMyself thankyou sweet ❤️.

Emails are hard cos I struggle to word things of what I'm trying to say. I just do things via normal phone calls, I can't do video calls. I have told them the times that I am available to talk, it's between certain hours and a reasonable gap yet they've picked outside of those hours to call me. Unfortunately my counsellor wouldn't be able to sit with me as it's not within her job scope.

Whilst I don't mind the problem solving right now i really just need an ear if that's ok please. I just feel like I've done everything I can at the moment.

Thankyou and I appreciate you reminding me. If only there was no time limit, most of the time I get 10-20 minutes and they are ready to end the chat, it makes it really hard cos you no sooner really start delving into things but then they disappear leaving you to calm down after opening Pandora's box so to speak. SCBS is not even an option for me but yes they are very time limited.

I hear you on giving feedback. Yes, being let down really fuels the Suicidal desires and they don't seem to understand that at all. Don't get me wrong i have had occasional chats with crisis services that have been helpful but they seem to happen once in a blue moon.

Listening ears and are and problem-solving brain has been told to take a holiday for now @MissGremlin 😎😅.

What are you and Casper up to this evening?

@AlwaysMyself thankyou ☺️.

Casper is laying at me feet, I'm sitting on my lounge watching true blood.

Are you up to anything tonight sweet?

I’ve never watched an episode of True Blood, but I have heard from friends that it is good. @MissGremlin

Is this one you have watched before?

No, I was planning to write out what I want to raise with my GP when I see him in 3 weeks time. But I haven’t because I’ve been more content to respond to the forums whilst others are online 😊. There’s no rush with the GP thoughts, but i like to be pro-active and “get it done” so it’s not on my mind anymore. But I did submit that feedback to the other service, so that was the more important timeframe one. ✅

@AlwaysMyself i have watched it before, i like it but the ending still annoys me 😂.

It's so lovely to have you here to chat to especially at the moment. At least you still have time to write down what you want to discuss with the gp, i love how you are so organised with things. I can never remember when my appointments are, I've tried to write it down but end up losing the pieces of paper or the book should I try to use one. Well done on submitting feedback to the other service aswell.

@MissGremlin Oldy but a goody eh! Hmm someone needs to make a fan-edited version with a different ending? lol

I’d ask how you’d like it to end, but maybe that would be a spoiler for me if I ever watch it??

I just searched back in my emails and I found the letter from a specialist back to me & my GP from 2021, which references a self-assessment “screener” questionnaire that was the basis for him excluding a particular possible diagnosis (although despite the second screening questionnaire also returning as “negative” I was still diagnosed with it based on his visual assessment because it was a physical and not nerve-based condition!). So it makes me wondering what/how I answered the questions on the questionnaire because in my learning about autism from my GP and counsellor it has become VERY obvious that I do not interpret questionnaires & answers/scales as neurotypical people do (for which they are designed) 😳 and thus I rate things MUCH lower and more literally than if a test-administrator were to ask me the questions and allow me to explain my experience and ask how I should score that. 😂. I have strong suspicions this type of thing may have been the reason my screeners were not showing “possible” for a diagnosis when I have had all the core symptoms plus most of the “sometimes” symptoms for 20 years and other people with the condition cannot understand why I have not been diagnosed with it (it is a subjective “diagnosis by exclusion of other things” condition, and I have had all the exclusion tests but no diagnosis of any cause for these symptoms 😳).

Yes, you may laugh at my silly brain. I do. But i am hopeful that they will send me a copy of the screening questionnaire & my answers so that I can see and reflect with my new knowledge as to whether or not I likely did answer it “wrong”. 😅.

@AlwaysMyself haha oh if only someone would but I probably wouldn't watch it 😂.

It would definitely be a spoiler, it's also an R18+ rated series so not something that can be talked about here.

Oh this is tough and also very interesting. I find it hard to answer questions on paper rather than trying to explain exactly what I want to say verbally. I read questions wrong or interpret them a different way. It would be good to get a copy of your answers so you can reflect on them, hopefully you can.

My brain has just gone to mush while I'm trying to reply and words are escaping me.

Despite mush-brain your final words came out very well and easy to understand @MissGremlin 😊.

I’ve just taken my brain down a rabbit hole after a discussion on another topic triggered my “oh yes, I’ve been meaning to research that..” moment lol