Rebecca's story: Why PIP matters for people with arthritis

Rebecca Kudyk, 37, from Colchester, has Grade 4 osteoarthritis in both knees, Ehlers-Danlos Syndrome (EDS) and Mast Cell Activation Syndrome (MCAS) which cause severe pain and fatigue. Rebecca says her Personal Independence Payment (PIP) enables her to receive the treatment and support she needs to ensure she can continue working.

Arthritis dismissed as ‘growing pains’ led to permanent damage

I remember as a child waking in the middle of the night with agonising pain in my knees and by the time I was a teenager my knees would almost pop out of joint but my mum had my symptoms dismissed as ‘growing pains’ many times.

I went to the GP in my early 20s but was told I was too young for arthritis, at 25 a private scan diagnosed Grade 4 osteoarthritis in both knees and the damage was so bad it couldn’t be reversed. I’ve had 10 operations to stabilise my knee caps but now I need replacements.

Around the same time I saw a rheumatologist who tested for autoimmune conditions via blood tests and then diagnosed fibromyalgia. I never felt I fit that diagnosis, just felt I’d been labelled because they didn’t know what it was.

Then I started seeing an osteopath and he looked at all my symptoms, which has never been done medically. He was the one who suggested I might have Ehlers Danlos Syndrome (EDS) and a private rheumatologist confirmed the diagnosis. I have no trust in the NHS now so pay to see a private consultant but have to claim on insurance every time, that’s £200 a month for private healthcare but it’s the only way to get the help I need.

It was about a year ago when I was also diagnosed with Mast Cell Activation Syndrome (MCAS), I have too much histamine in my body which causes joint pain. 

PIP means disability does not stop me from going to work

My friend is a PIP assessor and suggested I apply, she talked me through the process which is, I’m sure, the only reason I got it because I knew to focus my answers on my worst days.

I use it to help pay for my osteopath who has really advocated for me on my health journey. He’s the only person who’s ever seen me as a whole person rather than bits of a puzzle. In the NHS every department seems to work independently and it is creating a lot of misdiagnoses.

My muscles are rock hard to compensate for my ligaments being so relaxed which means I’m in extreme pain if I miss one week of the osteopathy. Without PIP I couldn’t afford it which means I couldn’t get out of bed, go to work, pick my kids up from school.

PIP has also paid for counselling. I trained as a counsellor myself but I sometimes need extra support which can cost £60 to £100 an hour. There’s a lot of grief over my disability, grief for the life I used to have and, without counselling, I would go into crisis which has happened a few times before. A big flare causes the rate of depression to go up because flares really do affect your whole life.

I also get Motability and, without it, I couldn’t drop my son off at school, without blue badge parking for the train station I wouldn’t be able to commute to work and I need to work to pay the mortgage. I also need to work for myself, it allows me to be separate from ‘disabled Rebecca’ or ‘mum Rebecca’. 

The PIP system needs to be more tailored for those with chronic illness

The system is very black and white, can you cook? Can you wash? That’s hard to answer with a fluctuating condition, some days yes and some days no.

They also need to take the fatigue into account. I have to spend days preparing for my one day in the office a week, thinking about what to eat and drink to avoid flares, tailoring activities with my kids so I don’t burn out. When I get back from the office I spend two days working from bed because I’m so exhausted.

I understand it’s hard to find a system that works for everyone but they need to tailor questions based on condition. Assessors need more empathy and training, how can they assess something they don’t understand.

I believe  around 95% of decisions on PIP are overturned on appeal, how is that acceptable? Who is holding DWP to account? And these are only the people who bother to appeal, there will be so many who feel so downtrodden by the process they won’t even attempt to appeal.