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Guilt and shame about pip award

chamomile54

Hello,

I was hoping someone could put my mind at ease about this. I got a text saying I’ve been awarded pip, and a message on my banking app that tells me how much will be coming in. I think it works out to be the full amount. This was my first time applying and I didn’t even have an assessment. It almost feels too good to be true and I can’t help but feel massively guilty for this, I’m scared that they have made a decision that is too generous and I feel a lot of shame that it was easy for me to get when others have to fight so hard to get it. It wasn’t easy in terms of filling out the form, I found it really stressful and it took me many weeks and two extensions to fill it out properly. I was claiming on the basis of having anxiety disorder, pre menstrual dysphoric disorder, autism and complex-ptsd. I keep getting thoughts like I’m not allowed to be happy ever again because I need to be constantly having break downs or suffering to be deserving of pip. The money hasn’t even gone into my account yet and I’ve been ruminating since I found out when it should feel like good news. Has anyone else had a similar experience to mine?

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Comments

Noidea19

congrats on your award but please don’t feel you don’t deserve it.

Sounds like you had a paper based assessment. This usually happens when you have provided enough information on your form. Detailed information or evidence that you provided. This is a good thing and not something you should feel ashamed of.

A lot of people fail at pip as they are new to the benefit and don’t really understand what is required of them.

I’ve had 2 assessments and 1 paper based. My first application I had to fight at Mr but thankfully I won that.

It’s down to knowledge an experience so given you have been awarded without an assessment you should feel happy and relieved.
Try an put it at the back of your mind now, I know it’s easier said than done.
just remind your self of the issues you struggle with every day and that’s why you have been awarded.

poppy123456

I'm sorry to hear you're feeling this way. I would say it's highly unlikely they've been "too generous" with your award.

It's true that some people have to fight to get their award but there's also some people that are awarded without issues.

It doesn't help matters when you hear of so many bad stories and much less good stories so it leads you to believe that you too will be refused and you'll have to fight.

It really helped your case that you took your time to fill out the form. The form you fill in is the most important part of your claim and this is where many people go wrong. Giving as much relevant information as possible in the form is the way to go, rather than rush it and give short irrelevant information.

You are also not alone in feeling this way because it's the same for some other members here too.

Zipz

Hi there @chamomile54!

I was awarded PIP at the Higher Rate for both components several years ago when my indefinite award of DLA was ended. Like you, I had a paper assessment, having supplied evidence of my progressive condition in abundance.

When the award letter came through after five months, I felt a surge of relief. After that, I felt sort of flat. I’d been through too much physically and emotionally in dealing with all the paperwork and, of course, years of governmental, MSN and social media attacks on disabled people. Moreover, it brought back long term issues or guilt and shame at not having lived a normal life.

I have some understanding of how you feel but you’ve come a long way. Try to give yourself a very well earned pat on the back. There is no way you’ve been awarded too much!

All good wishes,

Zips

chamomile54

I just wrote a very big message In response to you all but it’s disappeared, thank you so much for your kind words I will try to rewrite/find my original response

poppy123456

https://forum.scope.org.uk/discussion/comment/903151#Comment_903151

Sometimes comments get caught in the spam filter. When this happens it means they are not posted straight away but it's nothing to worry about. A member of the scope team will be starting work quite soon this morning and when they do they will post it here, so please wait a little while and it may appear.

chamomile54

oh it seems my messages have to be approved so if two very big messages pop up on this thread it’s because I thought they got deleted but they are just taking a while for approval :)

chamomile54

Thank you to both of you for your responses. poppy123456 and Noidea19

I was determined to give as much relevant information on my form as my autism presents as being very thorough and obsessive.

The thing that I’m most worried about and where I was scared about generosity is under planning a journey I said that -on good days I can take a familiar journey alone and unfamiliar journeys with a safe person. But they still gave me the full amount? Is this because despite those days I spend on average over half of my time at home due to overwhelm and burn out?

It was unclear online whether the 50 rule applied under the mobility section.

I just wasn’t expecting that outcome considering I was very honest about what I can do sometimes when some people get turned away for reasons that sound really unfair like having a driving license or being able to travel to an assessment once.

I would like to know if the Dwp make decisions based off of their own judgment sometimes? Or if they got it wrong and it’s my responsibility to call them and let them know? Or if they actually got it right and what I said does warrant 12 points because of the 50 rule?

Even so sometimes in the past I’ve been able to go on holiday with my partner or mum, after years of being agoraphobic and not able to leave my town. Granted those trips are few and far between and are always challenging. At worst I don’t eat on them and had a psychotic episode at best I just can’t be present the whole time because I am paranoid of getting ill. Now I’m worried that because of my pip award I won’t be allowed to go away again because I have to live my life in line with the points system even though I already told them I sometimes take unfamiliar journeys with safe people.

I’m aware that calling them and asking them these things would cause me a lot more stress and anxiety so I am trying this forum first.
thank you again

chamomile54

I tried to be a thorough as possible on the form my autism presents in a very obsessive and research based way like this. The thing I am most worried about though in terms of generosity is that under planning and following journeys I said:

I can take familiar journeys alone on a good day and unfamiliar ones with safe people. Yet I was awarded the full amount. Is that because I still spend on average more than 50% of time at home due to overwhelm and burn out?

It wasn’t clear wether the 50 rule applied in the mobility section and it confuses me how I could get the full amount being honest like that when some people seem to get turned away for nasty reasons like having a driving license or managing to attend one assessment?

It would be good to know if I should just trust the DWPs opinion based off the information I gave them or whether I need to contact them. Contacting them would be incredibly stressful but I can’t stand this anxiety that they maybe got it wrong.

I also worry that now I’ve been awarded I will have to constantly live my life within the points system that I was awarded for. For example occasionally I can go on holiday with my partner and/or mum. These trips can range in difficulty from not eating while away and having a psychotic episode to mainly not being present due to paranoia about getting ill and avoiding certain places and foods with maybe some crying and overwhelm all while never being alone.

The way I filled out the form saying - most of the week I stay home due to autistic burn out and my anxiety disorder though can take familiar journeys on good days and unfamiliar ones with safe people would mean I can still do things like go away occasionally or get on a bus on a good day without feeling guilty. But I’m incredibly scared they put me in the wrong catagory and that now it’s either contact them or limit myself more than necessary even though I was honest on my form.

Sorry for all the text I’ve been ruminating on this constantly and I need to express it to people who know the benefits system and stop burdening my mum with it

thank you

chamomile54

woops they’ve both been posted now thank you poppy for explaining

Ignore the second one!
sorry I’m really new to this

thank you for your patience with me

poppy123456

Please don't be sorry, the spam filter is frustrating when this happens but it's not your fault. Comments do not need to be approved before they are posted.

The 50% rule applies to all of the PIP descriptors for both daily living and mobility. For the mobility part, it will depend on how often you're able to go out. For activity 1E "unable to undertake any journey due to overwhelming psychological distress" means if on the majority of the days (at least 50% of the days over a 12 month period) you are unable to go out then it would be 1E for 10 points.

It's difficult to advise based on the limited information you gave.

Being awarded PIP doesn't mean you can't have any sort of life, you can still do what you always do so please try not to be afraid to do anything.

This may help you understand the descriptors a little more, if you haven't already read it.

https://www.gov.uk/government/publications/personal-independence-payment-assessment-guide-for-assessment-providers/pip-assessment-guide-part-2-the-assessment-criteria#daily-living-activities

chamomile54

Thank you for clarifying that the 50 rule applies for all criteria that is so helpful to me.

That does put my mind at ease a bit. I’ve read the assessment guide and I think because I shared that most weeks I don’t go out for 4 days and feel I need these days in order to avoid overwhelming psychological distress that I would fit into the category they put me in. I was just fearful that it had to be every single day or that they misread what I’d written.

I’m proud of myself for getting to the point where I can take familiar journeys alone sometimes and very proud that I can occasionally go further afield with my safe allocated people as being anxious and burnt out has already taken years out of my life. I just began to worry that the progress I had made would take away from my claim despite telling them about it. I told them I am recovering agoraphobic between 2019-2022.

I also think if i have made personal progress it’s easy to compare myself to where I was before which was being at home pretty much everyday for almost 2 years and gaslight myself out of getting help.

Thank you again for your time and your patience

Jimm_Alumni

Hey @chamomile54, welcome to the community 😊 I want to first congratulate you on your award!

I also want to add, I understand feeling like you don't deserve it. Consider however how stringent the DWP often is with PIP. They don't just hand out these awards. If they've given you an award it's because you are entitled to it. I hope with understanding how the 50% rule works it helps you see why you were given your award 🙂

The money is to help you live your life, if your conditions affect you less when your award is reviewed then you may get a different award.

I think, when we've been living with our conditions for some time, we can forget what… I'm not sure what word to use but, what "normal" is like for other people. Our "normal" changes. I sort of realised this with my Crohn's. I'd become so used to the daily pain, the fatigue and other symptoms that I sometimes wouldn't even mention them as an issue.

I know it's harder than it is to say, but try to not feel bad for getting the award. You are entitled to it, and it is to help you live your life.

WhatThe

@chamomile54 I really wouldn't overthink it or rehash the assessment. As has been said, getting a PIP award doesn't mean you can't make the most of your life with the limitations you have. If I were you I would just box it off and crack on with what is best for you - your well-being and contentedness.

Autism doesn't work like that.

chamomile54

Thank you everyone for helping to put my mind at ease. I’m going to bring it up with my therapist to try and help with the feeling of imposter syndrome and shame but your comments have been so helpful me in the meantime so I am grateful

W348

https://forum.scope.org.uk/discussion/121814/guilt-and-shame-about-pip-award

I think I have similar feelings. I would say I feel more shocked, massively relieved, but bizarrely a lower mood than usual.

I also got my PIP award without having to go to assessment. So I get the 'it feeling too good to be true' part. My mum mentioned I seem more down since my award too. I think this is partly down to shock after so many years not applying when I was advised to, and I avoided this for so long because I was worried about an assessment - which I didn't even have to have.

I think the main reason this has my mood lower than usual, is I feel like if they have awarded me PIP without seeing or speaking to me, then this makes me realise just how bad my situation and difficulties have been all these years. Like I've been in denial for so long thinking I would snap out of it and be able to function normally, but it just hasn't happened. If that makes sense? I'm a little disappointed in myself that I've not been able to do what most other people can do, in terms of just general day-to-day living. I think I feel a little sad because at the back of my mind it feels like I've given up on myself.

I think my GP helped me come to terms with applying before I started the claim process, I've been advised to claim for years, by both an ESA assessor and CAB.

I did ask my GP what he thought about me claiming PIP. As I didn't want to go through the stress of it all, and potentially have to contemplate an assessment if my GP didn't feel I would be successful. His words were that he knows many people who claim PIP who have issues far less severe than mine. I think I just needed to hear that outside perspective outside of my own bubble, so I could gauge the likelihood of it being a worthwhile toll for me to try and put myself through.

Part of what has me worried now is the money itself. I've been living on ESA for the last 20 years so I think I am a little overwhelmed. I don't want it to build up and get me into any trouble, so I feel like I need to spend more than usual.

I think if I can manage to get my own place in the near future, having to pay 100% of all the utility bills and food for myself may boost my self-esteem some if I can manage to live on my own. It sounds like I'll be waiting years though, once I get my name down. In the meantime I do kind of feel more optimistic, like I may have some sort of possibility at a future of sorts. What shape thy takes, I have no idea, but it has to be better than being in my childhood bedroom as an adult.

Needhelpandadvice

@chamomile54 You are not alone, when I brought my mobility scooter, I had survivor guilt where I am driving past people in their 70's walking, I even had people that age walking faster than I could in wet conditions.

It does not make me feel good, but I would say that I have accepted it now, but that would be a lie.

Ill health does not make you feel good, but sadly in life people get sick, that is the facts of life.

I am pretty sure, that we would want to be young again and in good health, but sadly we are not.

Well us old ones anyway.

chamomile54

https://forum.scope.org.uk/discussion/comment/904073#Comment_904073

I’m worried about the money building up too. I live with my mum so don’t have loads of rent to pay. I suppose now I’m getting money I can give some my mum and I’m hoping to spend most of the money on therapy so it shouldn’t build up too much but it is scary the thought of getting in trouble for that

WhatThe

AKR, yes sometimes we can but more often not with CPTSD.

This poster also mentioned menstruation so there's no escape or forgetting that for much of the month until the menopause.

poppy123456

https://forum.scope.org.uk/discussion/comment/904326#Comment_904326

PIP isn't means tested so savings do not affect it. If you're claiming means tested benefits then yes savings of more than £6,000 will affect them. The money owed to you from the PIP award is disregarded for 1 year.

If you are claiming means tested benefits then yes maybe you can increase the amount you give your mum. Or is there anything else you need for your home, maybe a new bed, or some other furniture that needs to be replaced?

Don't forget to treat yourself too because that's important, if you have the money to do that. Your PIP money can be spent on anything you want to.

chamomile54

https://forum.scope.org.uk/discussion/comment/904592#Comment_904592

May I ask what you mean by the money owed is disregarded for a year?
Also thank you for this information, it’s good to know that pip doesn’t monitor savings that do accumulate. I feel like I am going to have a hard time using some of the money because of the guilt complex I have. I think it just feels strange as someone who has never been able to work consistently I’ve never really had this amount of money. I’m very used to denying myself of things and being really careful with the smaller amounts I do manage to earn so I feel a bit bewildered. But ive had a think since posting my original comment and been trying to think of things that will benefit my life I could buy, like more therapy, noise cancelling headphones and maybe storage my art supplies. As well as being able to contribute more at home
:)