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Agoraphobia and anxiety

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  • Topkitten
    Topkitten Community member Posts: 1,285 Pioneering
    I have found that the most difficult and most annoying part of telling people I suffer Agoraphobia is that they always think I cannot go out for "fear of open spaces". Yes, that does happen to people but the official and correct definition of Agoraphobia is "A fear of panic attacks caused by the environment". In my case I could, if appropriately helped and medicated, go out without problems but I have an irrational fear of strangers and strange places. Meaning I simply cannot go into somewhere I haven't been to before unless I have someone I trust with me. But still people go on and on about "Agrophobia" (which doesn't exist) and downplay many of my problems because of it. If medical professionals and ambulance crews can get this so badly wrong what chance do we have of trying to describe it the the semi-trained assessors that are so often used.

    I hope you have better luck than I do because there isn't an actual descriptor to cover my problem in the PIP assessment, as far as I remember.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • cupcake88
    cupcake88 Posts: 1,273 Pioneering
    @Topkitten can you not get pip for that ? That’s a mental illness it’s apart of anxiety , 
  • cupcake88
    cupcake88 Posts: 1,273 Pioneering
    @overlyanxious  I would of though you could get mobility . 
  • poppy123456
    poppy123456 Community member Posts: 53,359 Disability Gamechanger
    Having anxiety doesn't mean a person is entitled to mobility part of PIP. It's not about a diagnosis, it's how those conditions affect you.
    I would appreciate it if members wouldn't tag me please. I have all notifcations turned off and wouldn't want a member thinking i'm being rude by not replying.
    If i see a question that i know the answer to i will try my best to help.
  • cupcake88
    cupcake88 Posts: 1,273 Pioneering
    Oh right that’s interesting to know thanks poppy your so helpful 
  • Topkitten
    Topkitten Community member Posts: 1,285 Pioneering
    @cupcake88, don't panic..... lol! I do get PIP but didn't get as high a score as I should have because the strangers and strange places problem confuses people so they tend to discount it. I get  high mobility and middle care but only just qualified (and this for a person unable to walk much, feed themselves and keep clean and tidy (and not to live in a pig sty). There wasn't a specific descriptor to show it so it went in additional details but, as far as I can tell, most of those get completely ignored by assessors. If it isn't covered they don't have any idea how to value it, it seems. I get PIP because I am physically disabled with an invisible disability and all invisible ones get undervalued because it's a judgement thing. I get even a lot of doctors and nurses who cannot understand how I walk at all if I state how much walking hurts. I have no choice but to walk or die of thirst / starvation and so walk because I have to and recuperate afterwards. Again recuperation time is another judgement call. Consequently I get marked down for having to describe it instead of it being easily understood due to a quantifiable  and specific problem. I wont get into the Social Care mess but,since Reablement pulled out expecting other cover to be put in place, 2 weeks on I am back to barely eating and drinking enough to get by (most days I survive on coffee, crisps and cakes) because the care company tried to asses me by telephone and using a woman whose command of English (spoken and understood) was minimal at best.

    @mikehughescq, The definition I found on a medical site (can't remember which) but it clearly states what situations can cause Anxiety and Panic Attacks (usually very closely linked). In fact I believe it to be a "catch-all" phobia because otherwise there would be an endless list of Environmental phobias. Claustrophobia, if you think about it, is also really an Agoraphobia condition as are some others specifically named. Most (if not all) causes of triggering Anxiety are related in some way to a reaction to the Environment such as..... open spaces, enclosed spaces, strangers, unknown buildings, travel by car / train / bus and even some related to using aids like sticks, frames and wheelchairs because of the way we get treated differently. Those are just a few, off the top of my head, that I can think of at almost 4am (sleep issues again). I won't go into details or it will just get boring but if you wish I will quantify any examples you think breaks the descriptor.

    A lot of what I write and say is the product of an intelligent and logical mind, rather than specific references to well known or even not so well known sites (having worked in the Computer Industry for 25 years and written programs and designed systems and then had to train and explain to the users before handover). I have to, for example, describe my main mobility issue to people by shuffling together all the bits and pieces of information I have gleaned from the hundreds of doctors and other healthcare professionals I have seen and spoken to over the last 15 years. and I often get told by A&E doctors that I cannot possibly know what I know to be true, some cannot even understand the difference between the 2 spinal issues despite the fact that one can be seen on x-rays but the other only on MRi'S.  As I have said before my condition is so unique that even doctors and specialists don't understand it and certainly have never encountered it before (especially those you would expect to know about it like the Pain Clinic). If really challenged I will then search for details to confirm my theories (and I have some real doozies, lol!) but normally I am fairly close to the spot simply because I have discussed so many issues with so many so-called "experts". However, everyone is entitled to an opinion and that doesn't mean anyone is specifically wrong, just maybe insufficiently informed by the people who should do better (to paraphrase your own comments). :smile:

    Anyway, it's now after 4am and I really should try to sleep a little, just means moving from room to room and using the bed (causes more problems than using the recliner for sleep) because the damn recliner is still broken since a week into the Covid lockdown. I'm told a new complete metal frame is needed and will take weeks to order and deliver (too large to post and God knows where I will put it when it arrives (escuse the religious statement, just my way of speaking / writing) and then I have to ring them so they can get an engineer to ring and make an appointment to fit it (basically rebuild the whole chair). Along with being told the complicated arrangements I was warned that although it was a manufacturing fault , if it goes again it wont be covered and they will put it down to misuse of the chair. I tried to explain that what she said made me very concerned that the chair was not "fit for purpose" (as I had explained my needs very carefully to the salesman) but it seems that his benefits from getting the sale led him to gloss over certain things (go figure!). The woman replied that she didn't want to worry me but their position was fixed and they would basically blame me and my use. I do hate it when someone puts forward 2 very conflicting statements and then tries to rationalize the impossible. Unfortunately these people don't seem to run into people like me very often, intelligent enough to fully understand and also prepared to argue the point.

    I sometimes think that whenever disabled people have to deal with important issues with the general public we should have half a dozen experts on hand (including a solicitor) so that we get treated fairly.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • poppy123456
    poppy123456 Community member Posts: 53,359 Disability Gamechanger
    @Topkitten high mobility and middle care? there's no middle care for PIP. The awards for PIP are standard and Enhanced for daily living and mobility.
    I would appreciate it if members wouldn't tag me please. I have all notifcations turned off and wouldn't want a member thinking i'm being rude by not replying.
    If i see a question that i know the answer to i will try my best to help.
  • cupcake88
    cupcake88 Posts: 1,273 Pioneering
    Wish I could understand what’s being said im confused ha . But I’m sure it’s really good advice . 

    My partner will be there by my side tomorrow . I will
    try my best to explain how my illness affects me if I start getting panicked then he can take over .

    im not good at understanding things and taking in what’s being said especially on a bad day . I’m so worried I’ll make no sense and won’t get my point across . I don’t leave the house if I do I have to be with my partner and my dog and I only go for a brief walk . 

    I got to a point where I could go back to work but now I just feel like I won’t ever get back to that point after the way I was treated previously . 

    I feel that my mental illness is obvious to people with the way I act especially on my bad days . 

    I can’t thank every one enough for all the amazing support this community has been amazing . For any one who’s fighting to get there pip please keep us updated as I will be wishing you all well . I will of course let you all know how tomorrow goes for my self . 
  • cupcake88
    cupcake88 Posts: 1,273 Pioneering
    @rsx

    I wish you all the best with your claim I know it’s worrying but I really hope you get awarded it and you don’t have to appeal please keep us updated and best of luck . 

    @mi@Username_removed thanks for your advice yes I’ll take my time to answer all the questions and hopefully I’ll hear back soon . I don’t think I’ll request to see the points I rather wait for the full decision or just hope I look at my bank account and there’s some lovely back pay in there lol 
  • katho31
    katho31 Posts: 692 Pioneering
    Hi @Topkitten thanks for your wonderful and insightful/interesting posts, great intelligence  :)
  • Topkitten
    Topkitten Community member Posts: 1,285 Pioneering
    @poppy123456, I'm sure you are correct. That was my DLA award. I cannot remember much about the PIP award itself, I was too stressed out at the time to register it properly, lol!

    @katho31, tyvm for your comment. Made me feel much happier on a bad day.

    @mikehughescq, over the last 2 and a half years I have averaged 1 ambulance a month and a trip to A&E every 5 to 6 weeks. I have yet to speak to an ambulance crew (including Paramedics) who haven;t said "Agoraphobia, is that why you can't go out, frightened of being outside?". In A&E i always have to explain to doctors and nurses what my Agoraphobia is. On average 2 out of 3 assume it's going outside that causes panic. I think it has come about due to people thinking that the Agraphobia (fear of open spaces) is quite common whereas, in fact, there is no such phobia at all, it comes under Agoraphobia and in A&E 1 in 10 tell me I am saying it and spelling it wrong because I have a fear of open spaces, etc,. etc.

    Sorry, not trying to hijack the thread just making things clear.

    I hope things go / went well for those waiting for assessments and or decisions.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • J35
    J35 Community member Posts: 33 Connected
    hi @rsx i've just been reading through your post, i also suffer with agoraphobia and anxiety and know everything that comes with it. my advice is get the report asap when you can. it's better to know sooner than later if it's going to be good or bad news, if your like me and just sit and dwell on situations for days not having a clear head this can go against you when the time comes and you only have a limited time to appeal. (of course everyone that suffers with a mental illness is not the same for everyone and people deal with things in different ways this is just my experience of what i went through) but my experience maybe could help you / others dealing with what we go through in situations like this. unfortunately it was bad news for me but because i got that report sooner i got through all the dwelling / bad days before the decision letter came giving me a clear head to properly put together my appeal. im almost finished writing up my MR and will be sending it off in the next week or 2 (with CAB helping also) but i do hope you get a better outcome than i did please keep us updated on what happens and take care :)         
  • rsx
    rsx Community member Posts: 70 Courageous
    @j35 thankyou, I had my assessment on Wednesday last week, when should I call do you think? I did t want to call too early. 

    I've deffinatly been dwelling on it, trying to pick apart the whole conversations to give myself clues of if the outcome will be good or bad so I deffinatly tho k getting the report will help prepare myself.

    Good luck with your MR hope everything goes well for you 
  • katho31
    katho31 Posts: 692 Pioneering
    Hi @rsx, my opinion only, but i rang about a week later and it was with assessors, then few more days I rang and was told/ I asked the man if id been successful as I was so stressed out, he said yes and I would get the report in post, it came approx a week or so later, my backpay was paid out well before the letter best wishes  :)
  • rsx
    rsx Community member Posts: 70 Courageous
    @katho31 thankyou, I was think about a week, I'll get somone to ring Wednesday and see what they say.
  • katho31
    katho31 Posts: 692 Pioneering
    Yes i would, its the waiting, it just messes with anxiety and stuff, best wishes :)
  • cupcake88
    cupcake88 Posts: 1,273 Pioneering
    Hi there I really hope you get your pip great advice there Im the same always prepare for the worst I dont think Ill be requesting  the points to see it rather just wait for the decision do you have one month to challenge it from when you receive the decision  ? I wish you the best of luck please keep us updated . she told me Ill here with in 8 weeks any body here quicker than that .
  • katho31
    katho31 Posts: 692 Pioneering
    Hi again, is yours a first time PIP application?
  • cupcake88
    cupcake88 Posts: 1,273 Pioneering
  • katho31
    katho31 Posts: 692 Pioneering
    Mine was also a first time PIP application, after the telephone assessment I asked some at scopes forum and they said it varies and I had to just be patient and wait at least a week to ten days or so. after a week I rang them, it does take sometimes a long wait on phone but they have a lot to deal with, the man said they had got it and it was with assessors, after a few days I rang back and asked if id been successful and he kindly said yes but no more info. not everyone gets told this I understand. a week later I got my backdated money in account 

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