My Agoraphobia.

[charmed1]

I guess my conditions have always been a part of me. But it wasn’t until ten years ago after the birth of my child that they were given names and identities. I was at first just diagnosed with post natal depression, I felt crippled by the illness and in fact by life I began to recognise that I was also having panic attacks and felt very inadequate. At this stage I was just managing to leave the house to do day to day essential tasks and because of the depression I don’t think that anyone noticed this becoming less and less.



I have now been diagnosed with Depression, Agoraphobia, Social Phobia, OCD, Post Traumatic stress disorder and of course Panic attacks and Anxiety. It seems like every time I see a new health professional I get a new name for a part of my condition. I think that I have a lot of knowledge and insight into my illnesses but I don’t think that gives me any answers to them. I have tried all different treatments from meds to hypnotherapy and three years ago I decided to go it alone, I stopped my meds and I stopped seeing the Doctors and nurses. I felt the best I had felt in years I even gave up smoking!!! True, I still had trouble going out but with the help of close family members I was once again able to start taking small steps toward a ‘normal’ life.



Just before Christmas the government announced changes to the benefits I receive and I found that I had to prove that I was ill. I found this a fair way to sort out the blaggers from this rest of us, however had I known what an impact this would have on my life I’m not sure I would have bothered. I went to see my GP to get a sick note telling the benefits office of my problems (He’s not the most understanding of Mental Health at the best of times, a bit old school) he told me I would have to go back into the system, which meant assessments and appointments all over again. I have to attend weekly appointments at the clinic again which is almost impossible for me, the job centre want me there once a month and the benefit office now employ a Doctor who I also have to go see. They don’t seem to understand I can’t go out and feel uncomfortable and anxious in these situations. They traipse people in and out of my sessions , for my own benefit I’m sure, but it doesn’t feel like that mid anxiety with all the paranoia setting in. I feel like I’m back where I was ten years ago. I was doing so well and now I have fallen back down. I know I will get there again I just wish they would let me do it in my own way.



I have a loving family and a wonderful partner but I really don’t think anyone can really understand exactly how you feel. They do try so hard but when I’m trying to tell them about the fear and the worry even the pain I see that look come across their faces like they wish they could help but not entirely convinced its even real. Especially as it seems like daily there’s a new challenge, my overwhelming anger at it all now has increased and they unfortunately are right in my line of fire and now with the anxiety and panic comes a small yet significant pain in my chest.



I can understand how people think I am making it up as it seems so utterly unbelievable to me that this is how my life has ended up.



Tomorrow (18/03/2009) I was meant to meet with the Doctor from the benefits but this morning they sent me a letter cancelling!!! This is the fourth time in as many months they have done this as they have 'misplaced my files'. Yet when we asked them to change the appointment so I could have my safe person (who is full time work) with me they said that wasn't possible and if I didn't attend they would stop my benefits. They then cancelled anyway via telephone the day before!!!

It just seems so unfair (sorry to whinge) that the very people put in place to help us are in fact the ones who are hindering us and being the most ignorant!! I understand that my illnesses aren't physical there for all to see like a broken leg or arm, doesn't mean I'm in need of any less help.

Does anyone else come across these kinds of issues??

[belle]

Hi.
I had issues similiar to you (rather not go into it on a public forum). Thing that annoyed me as that they're soon on our back if they think we're not doing what we should!

x

[charmed1]

Exactly!! I would like to think that despite everything I do have a good understanding of myself. Unfortunately its just not seen that way at all.

[Alabasterlyn]

Well reading your post it sounds like a nightmare with all this traipsing back and forth to the benefits office and it sounds like you really have gone backwards with your anxiety disorder due to this.

I'm just wondering if it's all worth the bother, or are we talking about a lot of money here? I had to stop working when I was 22 due to my anxiety. I didn't get any benefits, in fact I didn't even know I was eligible for any at the time, so I just stayed at home and started a family instead.

Over 30yrs later I am still doing the same, although I do now get the lower mobility rate of DLA. I can't be bothered to try and see if I am entitled to any other benefits, although after all these years I guess I'm not, but quite honestly I could never cope with going to interviews or assessments either.

You are totally right about people not understanding our condition and I think agoraphobia is very hard for people to understand. I know lots of people who get benefits for so called physcial disorders and quite honestly many of them are far more capable of working than we are.

[PoppyC]

I am so sorry this is happening and it is so unfair and I think due to the amount of people who can work but dont and raise whole generations on benefits, it has affected people who truly deserve benefits like yourself.
This is why the benefits system has been shaken up. I would actually complain about how you feel you are being treated. I dont know what benefit you are receiving but I would call that particular dept (incapacity benefit?) and say you wish to complain, and you should be passed to the relevant people.
I used to work for the DHSS so I have a little knowlege of these things.
You have the right to be visited at home. A medical examiner will visit you at home. The DHSS will arrange for the medical examiners office to contact you regarding this. You can also, before the appt date if you go to the actual examining centre, be allowed to apply to claim for a taxi there and home again or other travel costs to the door if your agoraphobia makes it impossible for you to be outdoors even for a while. Get your gp to write a letter to the DHSS explaining how your problems affect your ability to work - explain to him just how badly you are affected. Tell the DHSS how your illness affects you and how you feel you are not being treated fairly. Tell them the effects this is all having on you. As long as you have the backing of your gp, allow the medical examiner to see you, and are seeing your gp every so often, and not seen out in a manner that would suggest you are not in any way agoraphobic then you will have no problems in receiving benefits. - If you are informing them just how badly your agoraphobia makes it difficult for you to get to the jobcentre once a month then they should not be making you visit there if it is causing you undue distress.
I am not sure why you have to visit the clinic every week??? Is that for counselling? Do you go there with someone?
If you are seen to be attending these appts on your own (nor sure if you do or not) then the benefits agency will think oh if she can attend here on her own then she can get to a workplace on her own. That is how they operate.
I get agoraphobia on and off and no one not even the most understanding people I have found can fully appreciate how it affects me. It is so complex. I am fine if I am with someone but put me on my own I cant cope and break down. I used to be the most outgoing person there was too and now I am not even that person anymore.
Keep visiting your gp every so often. The benefits agency gets suspicious when people are claiming incap benefit yet never visit their gp. Could you change your doctor too if you feel is not understanding enough? If the benefits agency see you are not visiting your gp and not taking medications then they will start to think that you are not helping yourself to get better. I dont think that but thats how they operate. I used to work for them so I know a little of how things are with them.
The incap benefit rules state that you have to been seen every so often by their own medical gp to prevent fraudulent claims.
I do feel for you - try not to take it all too personally - the benefits agency act as they are doing now to try and weed out the types who claim benefits when they dont need them. Yours is a genuine case for benefit and so I can understand how you feel.

[charmed1]

Hey Poppy

Thank you so much for your message. I like you can go to certain places with my 'safe' person but I am unable to manage alone. I go once a week when possible to a Mental Health Centre where I see my Occupational Nurse. I used to have one come out to me years ago and help me at home but that was stopped due to funding. I will be looking into having the Medical Examiner visit me at home. I wish I had been told this before as it would have saved a lot of stress!!!

Thank you again.

[Erinath]

I'm so sorry you feel dragged back down by the system, I can wholly sympathise. I hope that you do manage to get your home visit and life returns to a more calming level for you.