Applied for PIP, AIBU to be scared of being laughed out the place?

[someoneneededyoubree]

I have debilitating Fibromyalgia.

I cannot raise my arms above my shoulders most of the time. Someone is now having to wash my hair and style it for me.

I now need help to get in and out of my bath/shower, of which I'm soon going to be renovating to fit my needs.

Apologies for being vulgar, but there are times where I cannot bend or move enough to change a bloody sanitary product. Yesterday I was in tears to my DMum because I was leaking but physically couldn't change myself. She couldn't get to me quickly so an amazing friend came over just to help me sort myself out. That wasn't just due to pain, for that I might've been able to bite through. But physically, I cannot do much when I'm at my worst because of muscle weakness/stiffness.

I recently dropped a pan of boiling water that wasn't even that heavy. Luckily enough I missed my own body and it dropped on the floor entirely.

If I'm visiting someone or out and about, I need to now visit disabled loos at times just so there's something there I can hold onto to lower myself onto the toilet.

I can no longer attend work and I'm on long term sick, I have been for a few weeks. Luckily they have been brilliant and are a huge company that support me to the max. However, it means I can no longer afford my old car and I'm now left stranded without, unless I have my DMum to help me get from A to B.

I have had to get shoes I can slip on as there are some days I cannot pull shoes on, and most days I can't bend for long enough to tye laces

I have applied for PIP and just waiting for the form. I'm so worried about what the assessor at the face to face will be like. I'm so worried she/he will tell a pack of lies, which seems to be the case for so many genuine people.

AIBU to be scared?

I just don't know what to do anymore. I really need the financial assistance. My DMum is a God send and I'm lucky to bloody have her. I'd be gone for if I didn't, I'm not sure what I'd do. From the outside I look fine, just very sore if I try and walk on good days. On bad days, I cannot walk more than a few steps and need my wheelchair. On other days, I have crutches. I have a DS who I'm tremendously lucky to have so much help with. He is an amazing little boy and I feel like I'm letting him down. But I know I'm not, he's bright and happy.

I have been told to include with the form -

•GP letter explaining how my condition impacts me
• A diary (a week's worth), explaining how I've been each day and how my condition has impacted me
• Letter from a consultant (fingers crossed I can get this in time)
•Letter from my DMum explaining how she thinks my condition impacts me, and how she helps me, such as helping me prepare a basic meal, washing my hair, on bad days, dressing my lower half

I am 20 years old and I feel so devastated that this seems to be my life, for now. The condition has been with me since the age of 14. It gradually gets worse as I get older, it seems.

Some times I go through stages where I'm feeling fantastic but I'm then slowly but surely back to square one, often worse off.

That sounds awful op no advice but i didnt want to read and run. It sounds so hard for you and i really hope it all gets sorted

I’m sorry your fibromyalgia is so severe and affecting you to this extent

I work for Citizens Advice and we help people to apply for PIP all the time. I strongly suggest that you contact them to ask for help to complete the form. There is a bit of an art to it, and it can also be mentally difficult to fill it in, so it can really help to have someone doing it with you for practical advice and moral support.

I also suggest that you contact your local county council and ask them to do a care assessment. It sounds to me as if you really need one and they will hopefully decide that you need support and help you get something in place.

Who do you live with, is it just you and DS?

Op I am so sorry. You are so young to be dealing with this.
Are you under the care of a specialist?

A word of advice. Take your worst day, and tell them about it when they ask about an average day. Not to be dishonest but they will use any display of being able against you, even if its only 1 good day out of 20. They will say well you CAN do XYZ, despite you not being able to do it 95% of the time.

Have someone with you at interview.,don't kill yourself to get there, they will do home visit if your doctor says you can't go
If they refuse you appeal, you have to go to that. Gd idea to get help
Good luck

“Take your worst day, and tell them about it when they ask about an average day.”

Don’t do this!!

The rules on fluctuating conditions are clear. You have to tell them about good, bad and average days, and tell them how often you have each type of day (eg bad day 3 days a week, average 2 days, good 2 days) then your award should be based on how you are most of the time.

If the assessor makes the wrong decision (they often do sadly) you can and should challenge it with help from Citizens Advice. There is no reason you shouldn’t get what you are entitled to, but it obviously helps to make your application as strong as possible in the first place.

My partner went through PIP assessment with fibromyalgia. I attended the interview with her. When the assessment came back rejected it was clear the assessor had lied. With legal support from a local charity she applied for mandatory reconsideration with no luck. Went to tribunal, took the judge 10 mins to award PIP including mobility component.
It’s a shitty process, designed to make you give up. Get help, if possible, and fight all the way to tribunal. Also, if someone can accompany you at the initial assessment, this can add weight to your claim. Although, tbh, my partner only mentioned my attendance to the tribunal, I was not called to give evidence.

On the application form, describe your worst days. Also, NEVER say you can manage something, when at your worst you can’t.

Wishing you the best.

Thank you for the supportive replies already

I will look into the help of Citizen's Advice

I'm scared of seeming like a total fraud but like Shake suggests, many other people on some of the PIP FB groups seem to highly recommend just referring to bad days and leaving what best days are like, since the assessors seem to have great talents in twisting words to suit '0 points'

I haven't seen a Consultant for quite a few years but I've recently been re referred by my GP (I now live in a different area). Hopefully they can help and might agree to a supporting letter, fingers crossed. I know evidence is key.

I'm now on Tremadol, 1 tablet a day, 4 times a day. Sometimes I manage to skip taking it, as I'm wary it can be addictive. I don't seem to be too dependant on it, but if I don't take it and I'm experiencing a bad day, boy oh boy do I pay for it.

YANBU to be scared, it's a disgusting and humiliating process. You sound fairly similar to me, though I have other conditions too.

I managed to get PIP but it was a hell of a fight. Prepare to be turned down and have to appeal and attend a tribunal. Unfortunately they aren't very sympathetic with fibro. Good luck - you'll get there, even if it takes a while.

cynic Great to hear your partner was awarded

May I ask if they got the standard or higher rate of mobility?

Some of this advice is well meaning but irresponsible.

OP, please only follow advice from official sources such as Citizens Advice and other organisations.

This website has three excellent fact sheets with advice on applying for PIP (one with general info, one about the form and one about the assessment). I use the fact sheets a lot with clients.
www.hertfordshire.gov.uk/services/adult-social-services/money-and-benefits-advice/money-advice-factsheets/money-advice-factsheets.aspx

Don’t mention the good days , don’t minimise, don’t let the assessor put words in your mouth. Do not wear a coat do not take a bag or phone or papers nothing as holding picking up a bag taking of coat will all be observed. Do not go alone ( they can hold papers).
You will be watched entering and leaving building and it waiting area getting up/down from chair etc

That sounds hard OP💐 Just a word to the wise; if your application for PIP is turned down, appeal. Many people ‘fail’ first time. I agree that you need to tell them how life is for you at its worst; it’s not easy to do, because it’s a ver negative way of looking at things, and most of us try to make the best of it. Put all the stuff in about needing help with washing, toileting/changing Sanpro. It’s a horrible, horrible form to fill in; it’s depressing, so have something nice to look forward to when it’s done. Keep a copy of the form too. Good luck with it, I’m just so sorry that you’re having to deal with all this at 20.

I have fibro among other things it’s horrible I get high rate care and mobility but am in a wheelchair.

Missed you wee only 20 am so sorry op

YY to keeping a copy of the form (you can reread it before your assessment and refer to it if you need to appeal)

And to planning a reward/treat for after you’ve done it!

I would suggest focusing on one step at a time so just the form for now, try not to worry about the assessment just yet (easier said than done I know!)

Sorry but they asked me about my GOOD days and I said I didn't have many. They pressed and twisted the whole interview and made me out to be FINE.

They are habitual liars.

I got awarded 0 points.

Went to tribunal and got awarded full.

They are arsehole and on every PIP/ESA page I went on they said tell them about your worst day wish I did as I almost ended my life over the tribunal. I was that distressed.

All because they took my 'best day' in YEARS as my day to day life.

It's cruel.

It is very daunting process I know but my dad was recently awarded PIP for fibromyalgia and his isn’t as severe as yours sounds tbh. He didn’t not get the mobility part though. I went with him and the assessor we saw was really understanding and very patient in letting my dad answer as he has anxiety and was very nervous. We weren’t even asked about good days. Just about how his disabilities affect his day to day life.

How could you seem like a fraud when they will have to see you in person to assess, they will see you struggle moving around with mobility, it's not all about a form they have to physically see you to assess.

Forgot to say join benefits and work website it’s excellent. It’s £20 but often you can get a code for £16 if you can’t afford it pm me and you can have my log in I won’t use again for a few years.

Shake

I got 0 points at my assessment which was at my home due to my severity, then got 73 after tribunal.

Hi op

I understand your situation. I've got chronic health condition I've suffered with for over 20 years. I had an awful pip assessment. The woman was such an ignorant cow, that she huffed and puffed through typing the list of my consultants and their details down. She said I was not anxious by 'looking' at me when she avoided eye contact with me through the whole assessment. And I have only have been given standard care despite my medical history and current issues.
I really hope you get a nice assessor and that you get the support you need

I'm a disability welfare advisor and my advice is entirely in keeping with the rules -

you need to identify an average day I.e. a day that represents your condition and abilities for the majority of the time. you can then present that - even if it's a fluctuating condition - as your typical every day.

i.e if 4 days out of seven on average you can't prepare food from fresh ingredients due to poor grip, pain, fibro fog and poor manual dexterity then you should present that as your current every day scenario. PIP assesses the state of your conditions for at least 50% of the time.

rule of thumb is that unless you can manage something pretty much consistently, never answer 'yes, but I sometimes need help'. instead it's always 'no, I can't manage this independently due to x y aspects of my condition.'

be graphic and give full details. give examples of support you require and not just the help you actually receive. even if you don't get help with something, if you would benefit from help then say 'I need help to manage this activity.'

look at the pip guidelines around reliability. to be considered able to do something you must be able to do it repeatedly (i.e taking meds when you need to every time, eating at least 3 meals a day etc) to an acceptable standard (without hurting yourself or say, wearing dirty clothes or clothes that are unsuitable for weather conditions), in an acceptable time period (no more than 2 x as slow than a person without your condition) and safely (not likely to burn house down or cause serious harm to yourself or others)

best of luck!

@someoneneededyoubree
She gets standard mobility. It’s enough to pay for taxis when she’s really struggling with pain (she works part time). It also means she received a blue badge, so she can park really near to work etc. when the pain is low enough that she can drive.