Paying extra to live my life – Jean’s story

Jean is 34 and has Ehlers-Danlos syndrome, which means her joints dislocate easily and she is in a lot of pain.

“I came home from work one day, fell over, was taken to hospital because I couldn’t get back up. I came out of hospital a week later in a wheelchair,” she says.

Jean, who lives in London, wants to get on and live her life – and for the seven years since she was diagnosed she has been trying to do just that. But she faces a huge range of extra costs relating to her condition, leaving her out of pocket.

Many of them aren’t obvious. Things like adapted cutlery and kitchen equipment are vastly more expensive than an ordinary set.

“I am supposed to have specialist knives to help me with preparing veg and things like that – with the handle at a 45 degree angle – but they are about £15 a blade. They are not covered by the NHS, you have to pay for them yourself, and we can’t afford them.”

Jean is a careful budgeter, tracking what she spends down to the penny. But she can’t scrimp on the things she needs or it can take a big toll.

“I have to eat a particular diet because my condition affects my gastric system, and if I am not very careful with what I eat then my gastric system will start going downhill. Our shopping bill comes to about £120 a week.”

“We had a situation a couple of years ago where we were living on essentially £50 a week, so we were buying the really, really cheap basic stuff. We managed to make sure we had enough to fill us but I was really ill. I was bed-bound for a year because I was having so many problems with my stomach and lower back and with pain in my hips and my pelvis. I couldn’t move.”

Jean has all kinds of other costs.

Some are really big. For example, Jean gets a basic wheelchair provided for her – but she really needs an ergonomic one to reduce stress on her joints, which is very expensive.

“You expect that any equipment you need you get from the NHS, you get for free, but you only get the very basics,” she says.

“I will be looking at around £1,200 to £1,500 to be able to get a wheelchair that suits my needs, and we can’t afford that at the moment.”

Others are more everyday costs, but still important. A trip into central London with her fiancé, Mike, via a wheelchair-accessible route costs an extra £6 every time.

“People think that because you are disabled you shouldn’t be allowed to have a normal life – to do the same things that they do. I’m just trying to have a normal life.”

Help us do something about the extra costs facing disabled people – join Scope’s extra costs campaign now.