Agoraphobia

Venus_Cee

Hi all, I'm in north east England and searching for a befriending service for lonely people, who struggle with agoraphobia and anxiety disorders. I'm completely housebound and would love to join a live chat online with similar people who don't go out. Or a telephone chat with groups if anyone knows any? I'm 55 years old, married and have suffered for over 35 years with anxiety and panic disorder. Would love to chat to people who struggle with the same conditions. If anyone knows of any, please let me know, thanks! Hope everyone is having a good day :)

Venus_Cee

Hi, I've had agoraphobia for the past 35 years. My doctors have me labelled as 'the worst case they've ever seen' and one doctor told me to my face, she doesn't think I'll ever get over this. I have many phobias and have struggled for a long time with them, although I have been able to combat a few, like pill phobia. Not 100% through it but I can take certain medications now without being glued to my headboard panicking and waiting for side effects. I often get out into the front garden now (which I could never do before) but can't leave my gate yet. The second I do, all the old symptoms come back. People stop to chat and they often tell me they can't believe I struggle the way I do because I'm so 'confident' when chatting. And I often tell them that people who suffer silent disability learn to hide their reactions because they're fighting their symptoms deep down and trying to control it all.

I signed up for a chat service a few days ago and got an email telling me to fill it in. Once that was done, someone would send me a link to 'video chat' someone 😲 I have really low self esteem and was horrified at the thought of speaking to a stranger online like that. So I haven't signed up. I understand they want to know who they're talking to but surely just ringing me would tell them I'm a woman?

Jimm_Scope

Hey @Venus_Cee! When my Crohns was bad I had some mild agoraphobia. So while I've not experienced anything as extreme as you have I understand a little about… how it feels in your head?

I think it's amazing that you're managing the front garden now. I think that puts to rest that doctor who said "I don't think you'll ever get over this". You've done something you could never do before. You should be proud of that. It isn't easy to change something so ingrained, it takes time and effort. Which clearly you've been putting in, not just with the agoraphobia but the pill phobia too!

I get the same with chatting to people as well. Often when in a social situation I apparently come across as confident and quite happy, but it's a mask I've managed to construct and on the inside I'm often struggling with anxiety. It was actually an issue with my PIP assessment, especially because it was over the phone and I've worked in call centres in the past so I have a confident sounding phone-voice. The assessor didn't believe I had any social anxiety at all!

I think the way you describe to people who find it surprising is good. Many people do only see the surface level and don't often think about what is happening behind the face/mask, in the persons head. Have you found people are usually more understanding afterwards, even if they don't fully comprehend or relate?

Venus_Cee

@Jimm_Scope I've always been open about my struggles. Most people who know me in real life, know what's 'wrong' with me and because of that, I've had a few people come to me, asking about symptoms and worrying they have the same thing. I always advise they see their own GP though because I'm not a doctor. 35 years ago I was terrified of even telling the doctor what was going on because just talking about it, made my anxiety worse. Now I have no problems discussing it and I've been able to help a few friends who suffer, just by being on the phone with them when they're panicking or anxious, talking them through the symptoms and helping calm them down. I didn't have any of that when I first started. No mobiles, internet etc. I had to deal with it all in my head and I knew nothing about it. Didn't even know what the word anxiety meant. Over the years I've done a lot of self help therapy and although I'm classed as 'recovering' now, I still get bad days but they're nowhere near as bad as they once were.

And yes same with my PIP. Because I don't leave my house at all, I'm not entitled to the mobility part. It's supposed to be about how your disability affects you and I've always said, being completely housebound is debilitating, especially when you're fighting all these panic and anxiety symptoms without there being any root cause. They changed the rules recently and are looking at peoples claims again, re: mental health but after my last assessment in 2020 they said they'd already taken that into consideration so I'm still not entitled.

Jimm_Scope

That doesn't sound very correct with your PIP @Venus_Cee. They are supposed to take into account your mental health when it's about going out as well. If it causes you distress for example. You might want to look into that.

I was the same, I was scared to talk about it. Worried people would judge. I slowly got more and more used talking about it, and now I'm quite open about it! It's a bit of a relief honestly, before I'd hide it and be worried people would "find out" or I'd be trying so hard to pretend nothing was wrong it made me more ill.

I think it's amazing you've managed to do so much just yourself, that requires inner strength and motivation! I think it's quite amazing what you've managed to do so far. I hope you someday prove that doctor wrong, the one who said you'd never improve. In fact I think you've already proven them wrong, look how far you've come.

I do think sometimes, even when we improve we still see the issues we still face, and forget about everything we've managed to overcome.

Venus_Cee

@Jimm_Scope I already questioned it but apparently because I don't go anywhere, I'm not suffering the same level of stress that others do. But they fail to understand that the reason I DON'T go anywhere, is because I'm too scared to! The last question is about planning and following a journey. And because I don't plan or follow a journey, it means I'm not anxious. They obviously don't understand what anxiety can do in the home too.

And yes I get told that all the time about the progress I've made. I know I have. But it's taken so long to get to where I can just do normal things inside. Recently I was diagnosed with two different diseases, including fibro. But I've heard that fibro gets points taken off you with PIP review - or they won't take that into consideration. So I definitely have a fight on my hands when it comes to my turn.

And yes, helping others has made me realise how bad mine was all those years ago. Sometimes someone will mention a symptom that I completely forgot about. But I did that much self help and learned what was causing it, I was able to explain to others what it was and how I managed to combat it. It's a horrible thing to live with. And these PIP assessors think we're all faking it. Would love to invite one of them to come live with me for a few days and see how exhausting life can be!

OverlyAnxious

You should be awarded standard rate Mobility for being unable to leave your home due to agoraphobia.

1e - Cannot undertake any journey because it would cause overwhelming psychological distress to the claimant.

Sadly, not all of the assessors or decision makers fully understand the rules. You have to put the physical consequences of attempting a journey into words they can understand. It's not enough to just say 'anxiety' as many people can push through the mental side of anxiety and still physically complete a task. You have to explain that you are frozen in fear or so dizzy that you cannot move or whatever the physical symptoms are in your particular case that prevent you being able to get out on the majority of days.

Venus_Cee

@OverlyAnxious yes that's what I should score. But they scored me nothing, saying I can follow a journey. I've provided evidence of being housebound but they don't listen to what I say on assessment either. The last time, she asked how I felt when I leave the house and I told her all the symptoms I get when I just step outside my gate.

I would prefer someone coming to the house and seeing how I live, what I can and can't do. But they don't do that anymore. It's over the phone or on video. They should really see how it affects us rather than just taking our word for it because sometimes we just can't explain in words what we're going through :(