DLA to PiP with Lipedema and Fibromyalgia

Good morning,

it came a bit of a shock last week to receive the letter that I will have to switch from DLA to PIP. I knew it would happen, but still..
At the moment I am still collecting what I can write down etc.

I must admiit I am very scared. So far I had lower care and higher mobility from the DLA.
I am working ( I run a tea shop) but it is still early days and I cannot yet live of it so the DLA money kept me afloat.

I have - amongst other issues - a condition called Lipedema.
This is very often mistaken for Lymphedema. Especially so called health professionals do not know anything about it and mark me down as a fat and morbidly obese person. That this is the Lipedema they have problems to accept (because they know eff all about it and don't seem to care)

I had my fair fights over the last years to finally end with a GP who knows and is willing to learn as well as a lovely lymphedema nurse who took every bit of information she could to help me.

My biggest fear is that in an assessment I will end up with another person who does not have a clue and it will end like so very often. The following scenario is my groundhog day:
you are obese - yes, I know, that is my lipedema and not caused by overeating
you need to lose weight - I cant , look up lipedema and find out that it does not react to diet
but still, you are overweight - ... rest my case

WHAT can I do? Has anyone been in the same boat?

On top of this I also have Fibromyalgia as well
How are the chances anyway?

I am worried sick at the moment.

Regards
Sabine

Hi Sabine and Welcome to the forum, you might want to have a look at the following FAQ which explain where everything is

Welcome to Benefits and Work

I'm sorry that this is causing you so much anxiety

Like DLA, PIP will be awarded because of your care and/or mobility needs rather than your diagnosis. However, it is a fact that the assessor will have an idea of what difficulties to expect from someone with your condition. I understand your concerns about your diagnosis being misunderstood, I think you will need to make it very clear which of these similar-sounding conditions you experience.

Unlike DLA, PIP has very specific descriptors that must be met in order to be awarded the benefit. These are explained in our PIP guide. The guide also gives examples of how you can answer the PIP questions.

PIP help for claimants

May I suggest that you bookmark/favourite this on your web browser now so that you can find it easily in future? This will allow you to return with further questions or comments about your PIP without having to start a new topic each time. We ask members to keep everything relating to the same claim in one topic as it makes our 'job' much easier - and I hope you will find it useful too