Please or to access all these features

Mental health

Mumsnet hasn't checked the qualifications of anyone posting here. If you have medical concerns, please seek medical attention.

Agoraphobia frustration

6 replies

Handbulbbrick · 19/11/2022 16:53

I'm severely agoraphobic and have been for years along with other severe mental health issues and ND. I was on DLA for a long time and when it switched to pip I was denied, I didn't appeal because I was scared of being sent to a tribunal or for more assessments outside of my home. My mum insisted I reapply and CAB helped me to get pip a year later, but I wasn't awarded anything for mobility and again bottled appealing it.

I can drive and do the drop off and pick up at school since I became a single mum. I just about manage with driving if I can park where I need to be and have time to prepare to get out. But I'm having to park further and further away for school now and it's getting really hard. My whole day revolves around gearing up for these two trips. Now I find out that they're going to make the street no vehicles at pick up and drop off. You're exempt if you have a blue badge. Pip doesn't think my agoraphobia is a mobility issue and I'm too late to appeal now anyway. I don't think I could handle going to a courtroom anyway. I tried to ask social services what I should do but I didn't get a reply. I really don't know what I will do.

I find it hard to prove my issues because I avoid going to the doctors, I avoid talking to people. It's hard to prove I'm agoraphobic when I have to visit new and strange or busy places to prove it. My history has been documented through crises and treatment for 20+ years but it never seems to be enough evidence.

When I asked the school they told me to come to a parent and teacher mingle event and that another parent would probably offer to take my DC in. It sounded a ridiculous idea and I made myself go anyway and then couldn't even begin to see where I was supposed to start begging strangers to take my DC.

My ex is living nowhere near us now and hardly visits. I think if I tried to ask him for help he would just use it against me.

I hear all the time just ask or just tell people if you're struggling to cope, that it's important to get help early. I've been trying to but I think I won't get help until I go into crisis again. I don't want it to get to that point. I don't know who to ask anymore.

OP posts:
Namechangerr1 · 19/11/2022 17:03

For pip you'd be looking to score points under activity 11 planning and following journeys, which is part of the mobility section. However because you do leave the house to do the school drop off they may see this as you're able to go out., it can be quite harsh. Do you claim UC? If so you could try and claim for limited capability for work/work related activity.

For pip if you explain your condition it is unlikely they'll make you attend an assessment in person, it will be over the phone. Make sure you tell them about any support you're getting for your agoraphobia and any medications. Good luck

FrownedUpon · 19/11/2022 17:14

Are you having treatment for your agrophobia? People recover from it, so don’t accept a life like that. What have you already tried?

Handbulbbrick · 19/11/2022 17:29

I don't want any extra money from pip, I'm just feeling scared at not being able to park near the school, only blue badges are exempt. And I don't know who or how to explain this to, I think it's the council and not the school that are changing the street. If it were the school I could explain why I need an exemption. But the council do the blue badges and the street changes so I don't think they will listen to me about exemption.

I have had four extended rounds of cbt for the agoraphobia over the last decade or so. I really don't want to go through anymore CBT. The last one was by telephone because of covid but before covid I was forced to go in for treatment and I just can't do it anymore. More than 20 years I've had psychiatrists and psychologists telling me they're going to fix me. I want a rest of it. I don't want to be restrained on the tube or made to sit in A&E for exposure therapy. I want to quietly get on with my life, I'm obviously not good at cbt. Before that I remember less because of age but I think emdr and counselling and a type of therapy with someone behind a one way mirror and lots of different therapies in hospital. They only offer me cbt on NHS now.

If it wasn't for these school runs I would not be leaving the house and I don't know how much longer I can do them, even if they don't change the street.

OP posts:
Luckydog7 · 19/11/2022 17:39

Have you asked the school for exemption directly? Perhaps an email to the head explaining that you have a documented disability (and can offer evidence if needed) but that you are being refused a blue badge.

Eyesopenwideawake · 19/11/2022 18:32

This is a post I wrote that I've cut and pasted from a previous thread on agoraphobia - hope it helps;

Imagine that your mind is a ship, with a captain and a crew.

The captain is your logical, conscious, objective mind. The captain decides where we are sailing to, and why we are sailing in that direction and what we're going to do when we get there. In other words achieving our short, medium and long term goals. There is, of course, only one captain and s/he can only work on a limited number of thoughts at any one time.

The crew is our subconscious mind, they steer the ship and carry out all the day to day tasks we are not consciously aware of; all our automatic thoughts and actions. They are also the custodians of our emotions, our creativity and our imagination and (most crucially) our core beliefs, which is the way we view the world and our place in it.

Up to the age of around 9/10 years old there was no captain on board the ship because children don’t have the capacity to consider the validity of what they are told or to think about long term goals. So the crew lived in the moment to keep the ship afloat as best they could, trying to keep us safe and happy. At the same time they absorbed lots of information, ideas and opinions about who we are and how we fit in the world. Some of this information was correct, some of it wasn’t, however it was all taken on board and believed to be absolutely true, both then and now. We call this the map of reality or critical faculty.

When we mature and try to do things that the crew decided earlier in life were not a good strategy, our ship hit the rocks. It could be something simple such as accepting that spiders are not dangerous or it could be life changing, such as standing up to a bully or giving a confident presentation to a 100 colleagues.

With agoraphobia, and other phobias, something happened (which could have been so minor you can't now remember it, or could be seared into your memory) and a crew member decided that that was so scary that it was going to take on the responsibility of protecting you from ever being in that dangerous place again. That crew member is doing its job every day because it believes this is the best strategy for the most happiness.

I'll give you a silly example. When I was a child I spent a lot of my on a nearby farm, playing with the animals and generally making a nuisance of myself. One day the farmer jokingly threw a small worm and told me it had landed in my welly. I was hysterical then and, to this day, always shake out my boots...just in case there is a worm lurking in there!

So how do we persuade the crew to stop doing what they're doing? If you know what your particular trigger was then consider what happened, when it happened and what was the outcome. Look at it from every angle now, as an adult - not with a child's eyes. How likely is it to happen again? What steps can you - as a grown up - take to ensure your safety? Did anything truly bad happen or did your imagination concoct a series of events that could have, but didn't actually occur?

Now (and this is when it sounds a bit mad but if you've made it this far you might as well carry on!) try and talk to the crew member in charge of your phobia. Start by thanking it for having done a fantastic job but explain that the work it's doing now isn't making you happy, in fact it's actively stopping you from doing the things that would make you happy and you'd like it to stop now. Have this conversation out loud or in your head. What will generally happen is you'll get lots of thoughts popping into your mind as the crew member panics a bit and tries to remind you of all the scary memories. Let your captain (your conscious mind) counter these fears with facts and rational thoughts. Keep going until you can think about the phobia without emotion.

Happy to expand (if necessary!)

Handbulbbrick · 19/11/2022 18:54

Yep, that's great. I'm cured. Does it work on physical disabilities too? I'm sorry you've had trouble with worms in your wellies. I'm wondering, if this works, why you still shake out your boots? Did you have mutiny on your brain ship?

OP posts:
New posts on this thread. Refresh page