Not disabled enough

[WildSuzanne]

I am not complaining or am I?

It turns out that I am not disabled enough to qualify for PIP*. That is pretty shocking or is it?

Well, it depends how you look at it. My husband thinks this is a positive outcome. To be assessed, I had to write about my life with fibromyalgia and submit an A4 summary. I complied, although I found this quite depressing and difficult. As a result, I had a week flareup and suffered anxiety attacks waiting for 6 months for the outcome.

I even had to submit more information, when I was initially refused PIP, because I had not amassed enough points. As a result, I had a further flareup. Revisiting my A4 summary, reading the DWP’s conclusions and thinking about what to write caused me mental anguish.

Not surprisingly, when I received the latest verdict of not enough points, I ripped up the document and put it in the bin. I have therefore chosen to embrace my husband’s point of view.

Let me explain. On the negative side: I am in pain every moment or every day; take medication; have flareups; regularly need duvet days when I either sleep or watch TV; have anxiety attacks and highs and lows.

On the positive side: I manage my condition: eat healthily; take daily rests; don’t go to the doctor; do pilates; walk my daughter’s dogs; write; go on holidays in Bertha, our campervan; meet up with friends; play scrabble. All these positives led DWP to decide that, although I have a chronic condition, it is under control and therefore don’t need assistance.

Therefore, it is true, I am not disabled enough and for that I am thankful.

Suzanne Wilders 9/1/2023

* Benefit awarded by UK Government through Department
for Work & Pensions for those with a disability

 

[JayCS]

Hi Suzanne, and welcome!

I totally get these ambivalent feelings.
And happy that you can see this as reason to be thankful, that you can follow the reasons given. I can then follow them too, as it seems the difficulties you have are not something that a payment could reduce.

My story for comparison:
When I'd told her I was going for a "severely disabled" badge, my acupressurist thought this a dangerous idea, cos it can make people feel worse to have that label.
Sounds a bit like your relief not to have the label?

I went for it only because of the advantages for me: I was only able to work a third of what I could before, and this gave me the possibility to work a bit less for the same money, plus work to be slightly easier on me.
Then I tried to go for a higher grade because the benefits were far less than my "disability", plus at the time I could hardly walk. That didn't go thru, despite an attorney, and I knew I wouldn't be able to. But it didn't matter because the further benefit for work or pay would have been slight.
Beyond that with MCAS I'd now need 400-500€/m to pay for the supps I need to work /"play" a little, but this is nothing our otherwise good health / disability system in Germany caters for. Aside from that I don't need more money, as I can no longer do anything much that would cost money.
Money it seems wouldn't provide you a better life with more possibilities.

Things is tho, I had no deeper emotionality whatsoever about it. I know I am very severely invisibly disabled in comparison with most people, but I don't feel "disabled", like my acupressurist believed I would. And neither the application nor the verdicts were any problem for me. It was like talking to doctors, also just people, with their opinions. I play this like a game of rummy, like I play the game of treating & coping with these conditions - just the rules are a more complicated and keep changing a little, just the basic analyzing techniques stay the same, so my previous conditions prepared me for fibro and that for MCAS.
Anxiety & depressive tendencies can double the trouble, radical acceptance can halve it.... ¯\_(ツ)_/¯

 

[Badger]

It's great to hear of the positive steps you have taken to manage life with fibro. Dealing with PIP can be very disheartening and make you feel like there's nowhere in the system for you being caught in the middle. Although stressful I would tell sufferers not to be afraid of taking it to tribunal in future. At least then you can talk to independent doctors to make your case. The last PIP assessor that came to visit me claimed in her report that I play games on my phone which I've never bothered with

 

[sunkacola]

Suzanne, it sounds to me as if you are doing all of the things that are recommended for managing fibromyalgia well, and for that I commend you. I think you are doing the right thing to embrace your husband's opinion on this.

While disability assistance should not be so hard to get (and it is very hard here as well), and while physically you are disabled and should have gotten the payments, you are not totally disabled, because you are able to do all of these things and have a good attitude toward it and manage this syndrome well.

Please feel free to come to this forum any time for support. that's what we are here for. I wish you all the best.