Getting PIP for PoTS? How do I describe my illness properly?

jamiemetcalfe0705

hiya everyone! i recently became physically disabled with a condition i've had since birth but only recently flared up significantly. i have PoTS and hypermobility which make it very difficult for me to stand and carry out daily activities. i'm in the process of applying for PIP but to be honest i'm having a lot of trouble figuring out how exactly to describe my disability and how it affects me. my pots means that i can't stand without experiencing extreme dizziness, feeling like i'm going to faint, pain in my legs and feet, and anytime i spend walking/experiencing those symptoms puts me at risk for a flareup in which i physically cannot stand for more than maybe 30 seconds before i will pass out - these are common and last many days. i've become very ill and disabled because of how taxing daily life is for me. because my symptoms always occur when i stand without fail, and i can't live my life in bed, i have to do things and experience those symptoms even though it makes me feel like i'm going to die during.

it makes it difficult to know how to describe my disability on the form and in the assessment because first of all, my disability is dynamic and i can go from relatively okay and able to walk maybe half a mile at once using a walking stick (probably not repeatable or any more than that at once), although being this well is rare, i can also be near-bedridden and have to crawl to the bathroom 10m away, unable to shower, prepare food, let alone do anything outside the house. i swing between these two somewhat rapidly but at the moment it seems to be a lot more of the latter. second of all, for the assessments and determining how far i can walk exactly i'm not quite sure how to answer? because technically i can walk, i wouldn't say far at all but walking is very painful for me and every second i spend walking is one i'm going to pay for later when i have a flare up and can't walk. i guess i mean i can't walk sustainably? and i can't walk without being extremely dizzy and feeling at risk of passing out. but the dizziness doesn't always inhibit me from walking, it just makes it risky (have fallen a few times, spent lots of time lying down in unhygienic public spaces because i was going to pass out if i didn't lie down there and then) and painful. obviously i'd rather lay down all day and not walk ever but i don't have a choice in that matter and just have to live with the pain and flareups constantly. does anyone have any advice on how to actually write about my disability and then prove it in the assessments?

thank you all so much in advance <3

Rachel_Scope

Hi @jamiemetcalfe0705, I'm sorry that you didn't receive an answer to your question. How did you get on with the PIP application?