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  1. #1
    Join Date
    May 2009
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    35

    A small blog regarding OCD, Autism and Coronavirus

    Well, I call it a blog. I don't blog. I just needed to write some things down. Feel free to have a read.

    https://anxiousandobsessive.wordpres...en-vulnerable/
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  2. #2
    Join Date
    Jun 2014
    Posts
    9,770

    Re: A small blog regarding OCD, Autism and Coronavirus

    My daughter shares your diagnosis, Mr X and she also would completely empathise with the way you are feeling and with the terror you are experiencing.

    What do you think of the Maudsley service?

  3. #3
    Join Date
    Oct 2019
    Posts
    98

    Re: A small blog regarding OCD, Autism and Coronavirus

    Wow, reading that blew me away. I'm nervous and anxious every day as I am sure we all are, but your condition reminds me of that old adage 'there is always somebody worse off than yourself'. I hope you and your mum will be fine and you will get some measure of peace in the near future.

  4. #4
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    Jun 2014
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    9,770

    Re: A small blog regarding OCD, Autism and Coronavirus

    I think it's very important to tell others about the terrible fears and tortures that you experience on a daily basis because people just have no idea how hard it is to get through each day. GAD is a walk in the park compared to this yet it's easier to get treatment/therapy because the ASD/OCD combination is just too complex and specialist provision is so limited.

    I would advise continuing with your therapy online if you can? At least you have contact with someone who should have expertise and you've waited so long for this opportunity.

    For what it's worth, I think your blog is magnificently written and highly insightful.

  5. #5
    Join Date
    May 2009
    Posts
    35

    Re: A small blog regarding OCD, Autism and Coronavirus

    Sorry for the late reply, guys! And thank you for reading .

    Quote Originally Posted by pulisa View Post
    My daughter shares your diagnosis, Mr X and she also would completely empathise with the way you are feeling and with the terror you are experiencing.

    What do you think of the Maudsley service?
    The Maudsley were great when I first attended therapy there (many more years ago than I like to think about!), but this time around, they were shocking. They struggled to adapt to remote therapy, and have actually discharged me; I received only 6 sessions before they decided that they were not the correct service for me, and the reasons they gave really p*ssed me off! I won't go into detail, but suffice it to say that EVERYTHING they used as a reason to discharge me, was made aware to them prior to me even being accepted by the service. There is absolutely no logic behind these reasons suddenly being a problem.

    To make things worse, they suggested that I be referred to a different specialist service - but they can't refer me, rather my local MH team must do so; I have been waiting for around 3 weeks now and no referral has been sent off. Even if it were to be sent off, both the Maudsley and my local team have suggested that it might be best to wait until COVID-19 is under control before I begin treatment... I mean, what the f*ck? As I said to them, no one knows when that might be; I could be waiting years!

    So, currently I have NO therapy.

    Oh, and my local team also offer therapy specifically for people struggling with COVID-19 anxiety, but they refuse to offer me that service, because there "is no one available [for me] to see", because I have "seen all available therapists." I'm fuming with it all, and my mood, unsurprisingly, has dropped.

    Quote Originally Posted by Panicattacka View Post
    Wow, reading that blew me away. I'm nervous and anxious every day as I am sure we all are, but your condition reminds me of that old adage 'there is always somebody worse off than yourself'. I hope you and your mum will be fine and you will get some measure of peace in the near future.
    Thank you very much . I do think, though, that although yes, as horrific as it is living as I do, people's fears and anxieties are relative, so I do try to avoid considering myself to be worse than anyone else/making anyone else's issues feel less important! .

    Quote Originally Posted by pulisa View Post
    I think it's very important to tell others about the terrible fears and tortures that you experience on a daily basis because people just have no idea how hard it is to get through each day. GAD is a walk in the park compared to this yet it's easier to get treatment/therapy because the ASD/OCD combination is just too complex and specialist provision is so limited.

    I would advise continuing with your therapy online if you can? At least you have contact with someone who should have expertise and you've waited so long for this opportunity.

    For what it's worth, I think your blog is magnificently written and highly insightful.
    Thank you again for the kind words.

    It's a shame, as above, that therapy ended how it has done. I'm very dissappointed, and feel quite 'brushed aside' by everyone involved in MH treatment.

    One thing to note, I actually have a diagnosis of GAD in addition to OCD; I have never considered it a walk in the park - even compared to my current situation! At its worst, I could barely leave the house for a very long time, and for a while, suffered horrendous, full-blown panic attacks. It's a very hard diagnosis to live with, so give yourself a break .

  6. #6
    Join Date
    Mar 2020
    Posts
    645

    Re: A small blog regarding OCD, Autism and Coronavirus

    Quote Originally Posted by pulisa View Post
    I think it's very important to tell others about the terrible fears and tortures that you experience on a daily basis because people just have no idea how hard it is to get through each day. GAD is a walk in the park compared to this yet it's easier to get treatment/therapy because the ASD/OCD combination is just too complex and specialist provision is so limited.

    I would advise continuing with your therapy online if you can? At least you have contact with someone who should have expertise and you've waited so long for this opportunity.

    For what it's worth, I think your blog is magnificently written and highly insightful.
    Twas ever thus, I'm afraid.

    Even during the 'better' economic/political times from the mid-90s up until about 2007 or so, people with ASD were still often treated with contempt by both the authorities and wider society at large, and too little provision despite greater knowledge and awareness of the condition during the time that elapsed.

    And often in order to pursue 'zero tolerance' policies against 'violence and aggression' as well, especially where aggressive meltdowns from the persons with the condition were concerned, whose actions weren't necessarily malicious in most cases. Especially when and where 'physical restraint' was exercised willy-nilly by irate staff members in day care centres, schools, hospitals, etc, and often as 'corporal punishment-in-disguise', which can in turn be even more detrimental!!
    Last edited by Lencoboy; 28-05-20 at 12:18.

  7. #7
    Join Date
    Dec 2016
    Posts
    2,354

    Re: A small blog regarding OCD, Autism and Coronavirus

    Good blog!

    Never criticize a man until you've walked a mile in his moccasins
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    I'm still a work in progress.
    Currently working on: World Domination

  8. #8
    Join Date
    Jun 2014
    Posts
    9,770

    Re: A small blog regarding OCD, Autism and Coronavirus

    Quote Originally Posted by Mr X View Post
    Sorry for the late reply, guys! And thank you for reading .


    The Maudsley were great when I first attended therapy there (many more years ago than I like to think about!), but this time around, they were shocking. They struggled to adapt to remote therapy, and have actually discharged me; I received only 6 sessions before they decided that they were not the correct service for me, and the reasons they gave really p*ssed me off! I won't go into detail, but suffice it to say that EVERYTHING they used as a reason to discharge me, was made aware to them prior to me even being accepted by the service. There is absolutely no logic behind these reasons suddenly being a problem.

    To make things worse, they suggested that I be referred to a different specialist service - but they can't refer me, rather my local MH team must do so; I have been waiting for around 3 weeks now and no referral has been sent off. Even if it were to be sent off, both the Maudsley and my local team have suggested that it might be best to wait until COVID-19 is under control before I begin treatment... I mean, what the f*ck? As I said to them, no one knows when that might be; I could be waiting years!

    So, currently I have NO therapy.

    Oh, and my local team also offer therapy specifically for people struggling with COVID-19 anxiety, but they refuse to offer me that service, because there "is no one available [for me] to see", because I have "seen all available therapists." I'm fuming with it all, and my mood, unsurprisingly, has dropped.


    Thank you very much . I do think, though, that although yes, as horrific as it is living as I do, people's fears and anxieties are relative, so I do try to avoid considering myself to be worse than anyone else/making anyone else's issues feel less important! .


    Thank you again for the kind words.

    It's a shame, as above, that therapy ended how it has done. I'm very dissappointed, and feel quite 'brushed aside' by everyone involved in MH treatment.

    One thing to note, I actually have a diagnosis of GAD in addition to OCD; I have never considered it a walk in the park - even compared to my current situation! At its worst, I could barely leave the house for a very long time, and for a while, suffered horrendous, full-blown panic attacks. It's a very hard diagnosis to live with, so give yourself a break .
    I'm so sorry to hear about your Maudsley experience and the way you have been cast aside, Mr X. We are going through a similar struggle to get my son admitted but no funding is being granted locally despite the local MH team advocating inpatient treatment there and him being high risk. Covid has scuppered so many people's chances of getting appropriate treatment at the right time.

    It's a stupid question but how are you getting through the hours now?

  9. #9
    Join Date
    May 2009
    Posts
    35

    Re: A small blog regarding OCD, Autism and Coronavirus

    Quote Originally Posted by Lencoboy View Post
    And often in order to pursue 'zero tolerance' policies against 'violence and aggression' as well, especially where aggressive meltdowns from the persons with the condition were concerned, whose actions weren't necessarily malicious in most cases. Especially when and where 'physical restraint' was exercised willy-nilly by irate staff members in day care centres, schools, hospitals, etc, and often as 'corporal punishment-in-disguise', which can in turn be even more detrimental!!
    People will never understand. I think a combination of ignorance and perpetual misinformation by the media will make sure of it - we're not all super-smart and eccentric!

    Quote Originally Posted by pulisa View Post
    I'm so sorry to hear about your Maudsley experience and the way you have been cast aside, Mr X. We are going through a similar struggle to get my son admitted but no funding is being granted locally despite the local MH team advocating inpatient treatment there and him being high risk. Covid has scuppered so many people's chances of getting appropriate treatment at the right time.

    It's a stupid question but how are you getting through the hours now?
    Have you complained? It can be a horrible task compiling a complaint but it might be worth it in the long run (I've put in many complaint and SOMETIMES they show a human side!). I've also found it very beneficial to communicate in writing here possible; you have a trail and evidence of everything that way.

    To be honest, sitting with my cats, playing music and spending hours upon hours on the PS4! Not much productive but it passes the time..!

  10. #10
    Join Date
    Mar 2020
    Posts
    645

    Re: A small blog regarding OCD, Autism and Coronavirus

    Quote Originally Posted by Mr X View Post
    People will never understand. I think a combination of ignorance and perpetual misinformation by the media will make sure of it - we're not all super-smart and eccentric!
    Quote Originally Posted by Mr X View Post

    Have you complained? It can be a horrible task compiling a complaint but it might be worth it in the long run (I've put in many complaint and SOMETIMES they show a human side!). I've also found it very beneficial to communicate in writing here possible; you have a trail and evidence of everything that way.

    To be honest, sitting with my cats, playing music and spending hours upon hours on the PS4! Not much productive but it passes the time..!
    Even though the 'zero tolerance' thing devised by the authorities some 20 years ago was probably well-meaning at the time, said policies in many cases IMO were/are ill-thought out and actually fail to address the underlying issues that cause people with ASD to often flip out, such as sensory overload sometimes even caused (both wittingly and unwittingly) by staff members in day centres, hospitals, schools, etc. I sometimes reckon that certain staff members in such places often tend to use such policies to fulfill their own hidden agendas and personal egos, especially if they're 'power-mad' in any way, even if they are lower down in the staff 'hierarchy' of any given establishment.

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