a snippet of public opinion/ignorance on agoraphobia

[ButterflyWings]

while searching websits for ESA and agoraphobia i came across this
http://forums.moneysavingexpert.com/showthread.php?t=2778176

a woman who has agoraphobia asked for advice in a money savings forum for information on how she might be able to apply for a grant to buy a car to get out of the house, most of us here will understand ( as i do ) that a car is an "extention" of the house , she felt it would make her life with agoraphobia easier as she could go out and visit family etc as she could not get on the bus ( we all know what a tramatic experience that can be )and was practically told she couldnt have agoraphobia as she could leave the house blah blah , fortunatly she could fight her corner,
reading it was like witnessing an interogation
:weep:

[paula lynne]

Hi, as a sufferer of 10 years, who is in recovery, I am frankly appalled at the treatment of this woman. How dare people say "Oh you dont have it because you can go out".
A ridiculous sweeping statement, which shows no real understanding of the condition and how it affects people. I wont be able to read your link, as my blood is boiling already, so I wont be helping myself if I do. However, thanks for highlighting this issue.
Its dreadful that people are still "catagorized" within an illness...ie...youve got to be completely housebound to have agoraphobia. This is untrue, misleading, and actually shows disregard for the person. Best wishes, Paula x

[PoppyC]

Hi
I just read the piece on that forum and she was treated badly by the other responses. She was really ganged up on! At least she kept calm. I wonder how she is?
I think a lot of the reaction was caused was because she was asking about advice in getting help to get a car, and anythng to do with benefits seems to be a very sore point at the moment with many people. I don't agree with how she was treated - just thought would add that!
There are many different ways how agoraphobia can affect a person and I think that if people don't have much knowledge about it, they just assume it means that a person cannot go outside at all.
I have agoraphobia, and go to pieces if I am out anywhere on my own, but I can get out with people that I trust. I also can get out alone with my gorgeous dog, but even then I have quite high anxiety. I often end up in tears outdoors even when I am with someone else, and I can get agoraphobia symptoms in the car. I get derealisation with it and just basically end up feeling like I am going mad. I hate that feeling!
My partner has the car, - I won't drive - and I either go anywhere I need to with him. I can get a taxi alone to the place I need to get to with the car pulling up straight outside, as in work or for an appointment,so I am not outside on my own for long. I am very uncomfortable on my own though in the taxi.
I have had comments before where people have said How can you do this and that if you are agoraphobia and basically I just now tell them to read about before they comment. It can be really upsetting.
The poor girl ! I wonder how she is doing.

[nomorepanic]

It doesn't look like any admins moderate that forum as it should have been stopped dead in it's tracks when other people started being rude to her!

I love that webiste as well - very useful info on there.

[Vixxy]

I've not read that thread, but I have something to add. It bothers me that people with mental health problems cannot get a blue disabled badge for their cars.
I was lucky and my nan loaned me the money to buy a car when I was agoraphobic. My god that car has helped me so much! As you say, it's an extension of home. A place to feel safe and a place of refuge.
However it saddens me that I cannot park it close to shops and amenities because I'm not physically disabled. Surely it should extend to anyone that needs their car to be as close as possible?
Just my 2 pence XD

[paula lynne]

Ditto, Vixxy x

[Alabasterlyn]

I've not read that thread, but I have something to add. It bothers me that people with mental health problems cannot get a blue disabled badge for their cars.
I was lucky and my nan loaned me the money to buy a car when I was agoraphobic. My god that car has helped me so much! As you say, it's an extension of home. A place to feel safe and a place of refuge.
However it saddens me that I cannot park it close to shops and amenities because I'm not physically disabled. Surely it should extend to anyone that needs their car to be as close as possible?
Just my 2 pence XD

Don't even get me started on that one. Honestly it makes me so cross the way those of us with agoraphobia are treated when it comes to having a Blue Badge.

Some years ago my GP suggested I apply for one, which I did and of course I was refused one. I kept phoning them back to fight my corner and was often met with some very rude remarks. One lady asked me to go to their offices in a town quite some distance away for an assessment. When I said I couldn't get that far she asked me why I wanted a Blue Badge if I wasn't able to go any distance. I am sure people who get one for having a physical disability don't get talked to like that.

What was really weird with my application was that about a week after I was told I would definitely not get one and my £2 cheque was returned, well one day I opened the post and there was a Blue Badge :yahoo:

I can't tell you how much having that Blue Badge changed my life. For 3yrs I was able to do so many things that had previously been impossible for me to do. I went to the ballet, the cinema, the supermarket, even parked in the middle of town and could then venture into the high street shops.

I actually never told anyone about having the Blue Badge as I was sure it had been sent in error and was worried that they would one day realise they had made a mistake and ask for it back.

A couple of months ago the Blue Badge ran out and I reluctantly applied for a renewal. I'm sure you can guess where this is going. I was refused yet again on the grounds that my disability is not physical. I have got my local councillor involved, my MP, my GP, the local mental health team, but so far nothing has worked. Now I wish I had never had one in the first place as I guess what you never had you can't miss :weep:

[Vixxy]

I didn't even bother to apply for one. I read up on my local councils web page and it said that there was no point in applying.
I'm completely with you, I cannot go on the high street. I stick to the shops by the car park and then I park in a different area of town and go to the shops nearest that one. So the high street is ignored as there is no parking close enough for me to use it, EXCEPT blue badge bays! Sad thing is, I wouldn't abuse the system as I know people with physical problems need them more than me, but it would be nice if I had that option.
I'm moving to a new city soon, so I'/m going to give the application ago and see if I get anywhere. I wish you luck getting yours!

[Alabasterlyn]

The town I live in has a brilliant shopping mall that is ideal for the able bodied. However the parking is all on top of the mall, so you need to drive up one of those awful whirly gig things just to get on the first level of the car park. Unless you go very early or very late you just can't park. Even if you can park on the first level you still have to go through various doors to get to the stairs or escalators to get down to the shops. On a good day I can just about manage that, but if we can't park on the first level we just pay £1 for the pleasure of driving round in circles and go home again.

I know a few people who have a Blue Badge for a physical disability and it amazes me how easy some of them manage to get one. One friend I have is so mobile that the first time I met him he picked me up and turned me upside down, yet he is 'so disabled with a bad back' that he cannot work and gets every benefit going. I keep seeing pics of him on facebook cycling, scuba diving, going down waterslides, standing in a swimming pool with his wife sitting on his shoulders and so many other things that I could write a novel on it. It just makes me very angry that even though our symptoms are so physical that we are discriminated against like this :mad:

[Vixxy]

You just inspired me to email my local council about a badge. Maybe i'll hear back some good news.... not counting on it though lol.
My shopping centre is the same. Aswel as Ikea.... my god the shop is on the top floor and its like a rabbit warren trying to get back out again. I hated it. I was so anxious I walked as fast as I could through the shop to get to the exit. I don't think I looked at anythign in there!

[Alabasterlyn]

Whilst trawling the web finding out info on the Blue Badge I did find this article, not sure if it's still relevant as I know they keep on changing the criteria all the time, but it makes interesting reading

http://www.dft.gov.uk/transportforyou/access/bluebadge/background/pastresearch/bluebadgefinaleligibility.pdf

People with mental health difficulties

Due to the wide range of mental health difficulties, it is difficult to generalise as to the relationship between mental health difficulties and access to services. This study shows that, while some people with mental health problems encounter no problems, others face serious barriers. There is evidence in this study that travelling independently can be problematic for people with anxiety-related conditions, as this can trigger a panic attack, especially in crowded and unfamiliar surroundings. There was even greater risk of this happening to people with severe disorders (e.g. schizophrenia). For people who have panic attacks, some may start to associate particular places and situations with having such an attack. In an attempt to avoid another attack, some people may start to avoid places where attacks had previously occurred, and this can reduce their propensity to travel and to participate in everyday activities. There is a high risk for people to develop conditions such as agoraphobia or social phobia.
Quality of life and social inclusion could be greatly enhanced by entitlement to parking concessions. More importantly, the evidence here suggests that reduced walking distances to a person’s final destination can, in some cases, potentially reduce the risk of some mental health conditions getting worse. The ability to park close to destinations would help to prevent the person concerned from having an anxiety attack, becoming confused and feeling lost.

[ButterflyWings]

i was actually thinking if i would qualify for a blue badge on the grounds of not being able to walk through an area to get to a location , but i doubted i would get it,
its shocking that people can talk to agoraphobics like that and crack on with their day with no guilt about what tey have just said,
also i dont know anout anyone else here but i also get the impression that mental illness means stupid, personally i would love love love to study and go to university, but tackling the corner shop is more of a mountain than i can climb im afraid :blush:

P.s how do i change my settings to get email notifications on threads i comment on???

[miss_moose]

I was so angry and upset with the posters on there i've replied.

"Some of the posters in this thread have made me really angry. I too have agoraphobia and social phobia, and the lack of understanding and respect for the origional poster (young woman) is discusting.
You should gain some knowledge of agoraphobia before you start judging and making nasty coments.
Agoraphobia is not just a "fear of open spaces", it has varying degree of levels, it's not consistant, and has alot of different meanings.
I myself would be much more comfortable stood in a field with no one else around (except my fiance), than i would indoors with any amount of people, or in a building that wasn't my own home.

YoungWomans need for a car is an essential part of her recovery and a way to get out of the house while still having a Comforting safe place, whereas being on a bus, with people, not being able to escape to a safe haven, yes you can get off the bus, then be left on a street away from home, it's terrifying.
Who ever said about her "being paid to drive around in circles", what a riduculous thing to say.
Do you know how it feels to be cut off from family and friends, to be alone all day every day for years just stuck in your home with no company, nothing to do? Cos i'll etll you, it's the most horrendous lonliest feeling in the world.

This woman is just wanting to have just a taste of the freedom that everyone else has, and if going out in a car is the only way for her to get some kind of normality and a have a change of scenery for an hour or 2 then it's a fantastic well worth cause!"

[ButterflyWings]

very well said honey, especially the part about being cut off , thats exactly right .
for me being outside in the countryside with just my partner and daughter with no one around is managable but strangely still smothering , and if there are people around i just put my head down when we walk past them , i have no doubt they think im ignorant ,
and social situations are awful , its hard on my partner because his social life is dictated by my agoraphobia, he will sugest going to a friends for a drink and i will generally go in a mood and get upset , we will have a big fight and he will say it doesnt matter. 99% of the the social gatherings we get invited to i back out of ,

[nomorepanic]

P.s how do i change my settings to get email notifications on threads i comment on???

Click on thread tools at the top of the thread and then "subscribe to this thread" and change it so it sends you instant emails.

Hope that helps

[suzy-sue]

Ive been getting mine a week late ...lol