Tag Archives: Ehlers-Danlos syndrome

Paying extra to live my life

Jean has Ehlers-Danlos syndrome which means her joints dislocate easily and she is in a lot of pain. In this blog she talks about her experience of extra costs and shares her hopes for the next government to bring about everyday equality for disabled people by 2022.

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. I was diagnosed with Ehlers-Danlos syndrome several years ago. Since then I’ve been trying to get on and live my life, but I face a huge range of extra costs which makes things harder than they should be.

The things I need to live my life

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

I’m a careful budgeter, tracking what I spend down to the penny, but I can’t scrimp on the things I 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.

I have all kinds of other costs. Some are really big. For example, I get a basic wheelchair provided for me, but I really need an ergonomic one to reduce stress on my joints, which is very expensive. You expect that any equipment you need you’d get from the NHS (you get for free), but you only get the very basics. It’s around £1,200 to £1,500 to get a wheelchair that suits my needs, and we couldn’t afford that.

Jean sitting at a desk with an open laptop in front of her
Jean struggles to pay for essential equipment that she needs to live

Everyday equality by 2022

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.

My future vision for disability equality would be that all buildings and public spaces are built with disability in mind from the outset. Anyone can use accessible facilities but disabled people cannot use all facilities.

I would also like attitudes to change so that disability was seen in the same way as race, sex or gender – just an everyday difference rather than an inconvenience that has to be managed by companies, corporations and institutions.

I want disabled people to be involved (not represented but representing themselves) at all levels of responsibility. The old adage of “nothing about us without us” still isn’t utilised enough in my opinion.

Tell us what being financially secure means to you

Scope is calling on the next government to improve disabled people’s financial security.

You can read more about our priorities for the next government and how you can register to vote in this election.

What does being financially secure mean to you? Email the stories team at Scope and tell us your experience – stories@scope.org.uk

You can also join the conversation on social media by using the hashtag #EverydayEquality

‘You can walk, it’s a miracle!’ Umm, no I can’t. #EndtheAwkward

Lucy is an award-winning charity campaigner, blogger, and dog trainer. For our End the Awkward campaign, she describes the day she was told she could walk again… by a physiotherapist who failed to spot her wheelchair in the corner of a room.

I have Ehlers-Danlos syndrome. Instead of my collagen being like glue it’s like over-chewed chewing gum, or at worst wet tissue paper. It stretches, gets thinner and sometimes tears, but never resumes its normal shape.

As a result, my gut has failed, my bladder has failed and I can’t eat or drink anything at all. I’m attached to a pump 24 hours a day which pumps all my nutrition, fluid and medicines straight into a line in my heart.

In most cases, people with Ehlers-Danlos can lead fairly normal lives. I have a really severe form which has led to organ failure and life-limiting complications. Nobody knows why. It’s just how it is.

My life philosophy

I had health problems growing up but I became disabled and very poorly when I was 14. In months, I went from being healthy to completely wheelchair bound, and then a year later bed bound.

Lucy and her mum smiling at the camera. Lucy is holding a certificate stating she is now an ambassador for a children's palliative care network.
Lucy and her mum. Lucy is a youth ambassador for the International Children’s Palliative Care Network

I’m 21 now and my health is up and down. Sometimes I can get out and about, at other times I’m stuck in bed for up to a year at a time.

My philosophy is simple. You have to make the most of what you’ve got and not dwell on the things you haven’t, especially when your time is limited like mine is. To get by you also have to laugh, and find humour in even the most difficult situations.

Seriously, I can walk now?

Last year, I was in hospital recovering from a major hip operation. A physiotherapist breezed over and told me I’ll be walking again in no time. Hallelujah – a miracle!

I explained, patiently, that I haven’t walked for six years but she wasn’t listening. Apparently, I was going to make a full recovery. Five minutes went by before the penny dropped and she spotted my wheelchair. I watched her face turn as red as a beetroot. She must have felt seriously awkward, because that was the last time I saw her.

Molly, my assistance dog

Lucy coddles her dog Molly
Lucy and her ‘rock’, assistance dog, Molly

Molly is my assistance dog in training. She picks up things I have dropped, puts clothes in the washing machine, takes my jacket, trousers, shoes and socks off, gets my mobile, fetches my medicine pouch and lets people know if I need help or alerts them if I’m poorly.

When I’m out with Molly, people will say to me: ‘Is she pulling you along then?’ or ‘You don’t need to worry if you break down do you?’ I try to smile, but when it’s most people I encounter saying it, it gets old.

Joy rides

I use an electric wheelchair. For some reason, people love to lean on, or next to, my joystick, so I am always sure to switch my chair off unless they fancy going for an unexpected ride!

Molly has driven me a few times as she likes to lay her head next to the joystick. I have to be careful when people hug me too. When I do leave my wheelchair switched on, the look of horror on people’s faces is priceless – you’d think they had committed a crime.

Why is disability so awkward?

When you’re in a wheelchair, most people don’t talk to you or even look at you – except the ones who stare. But when I got Molly, people started talking to me. She became the perfect icebreaker! Now, rather than being “that girl in the wheelchair” I’m the girl with the amazing dog.

Lucy in her wheelchair outside, walking her assistance dog Molly
Lucy and Molly on a training walk.

Awkwardness comes from unfamiliarity. People are too scared to talk to me for fear of saying the wrong thing. So some cover their nerves with silly jokes and others just totally ignore me. When people are scared of saying the wrong thing to disabled people, they end up excluding us.

How to end the awkward

I wish people would treat disabled people like they would anyone else they meet. Our bodies may mobilise and/or communicate in a different way, but we’re still human beings with wants, needs, hopes, dreams, desires, hobbies, passions, outlooks and attitudes.

We’re as unique as the rest of you, and we all want to live the best life we can. I wish people knew how to talk to us, which of course, they literally do, but when they see a disabled person everything goes out the window.

I can guarantee that you can make a disabled person feel 100 per cent better if you walked up and talked to them about ‘normal’ things, rather than entering straight into deep, intrusive and personal questions.

I’m quite open. I don’t mind telling people about my disabilities. But it would be nice if one person just started a conversation with me for the sake of it. I’d love that.

Through her blog, and social media, Lucy shares her life with Ehlers-Danlos Syndrome and describes how her charity work is helping to change perceptions of disabled people.

Lucy is raising money for a custom-made electric wheelchair to help her regain some independence.

Have you got an awkward tale to tell? Share your story with us.

 

Lazy? No, just disabled… life with an invisible impairment – #100days100stories

Guest post by Carol, an administration manager from Leeds. Carol has Ehlers-Danlos syndrome, an invisible impairment, and has shared her experiences as part of our 100 Days, 100 Stories campaign. Last year, she worked with us on a film raising awareness of the extra costs disabled people face.Head and shoulder shot of Carol dressed in black

I was once in a lift with a very, very senior manager at a company I used to work for. I was going up one floor, but I needed to take the lift because I struggle to manage the stairs.

I pushed the button, and he looked at me and said: “Only going one floor, are we? Aren’t we lazy?” I smiled and said: “No, just disabled.”

To be fair to him he was mortified, and it made me laugh more than anything else. And he was always extremely considerate of my needs after that. But it struck me that that’s exactly how the world often sees disability.

No middle ground

The assumption seems to be that either you’ve got a wheelchair, or have some other very obvious impairment, or you’re not disabled at all. There’s no middle ground.

It’s present even in the symbols we use. The universal symbol for disabled facilities is a person in a wheelchair, but that’s not necessarily what a disabled person looks like.

I have something called Ehlers-Danlos syndrome hypermobility type, which affects your connective tissues. Among other symptoms, it means your joints are very prone to injury. I have also had something called Perthes’ disease, which means I now have osteoarthritis and need a hip replacement.

I can’t walk very far, I can’t carry heavy things, I get tired very quickly and sometimes my joints partially dislocate.

Sometimes I limp, occasionally I have to use a walking stick, and often I’m wearing joint supports under my clothes, or taking a lot of painkillers. But often, you can’t tell that I am disabled.

People’s reactions

Because I don’t look particularly “disabled”, people are surprised that I need adaptations at home and at work, or that I might have extra requirements.

There have been lots of times where I’ve said something like, “Actually, can we get a taxi because I can’t walk that far?” and had blank looks back in return.

On a good day, I can walk about 160 paces without too much pain. That doesn’t get me even as far as the bus stop, so I’m completely dependent on my car.

I have a blue badge that allows me to park in disabled parking bays, which is an absolute lifesaver, but I’ve had some unpleasant run-ins with people who think I shouldn’t park there.

I get stared and sighed at when I’m climbing out of my car, as people realise I’m not elderly or in a wheelchair. People have literally run out of buildings to tell me to park elsewhere.

I know they’re trying to do the right thing, but it’s an awkward encounter that I could do without – especially since I often can’t get a disabled space because a non-disabled person has used it to pop to the cash machine!

Better support

Social faux pas aside, there are bigger problems with the way society tends to ignore invisible conditions. Because they aren’t there on the surface for everyone to see, it’s very hard to get the right support.

Often, I see doctors who have never heard of Ehlers-Danlos and ask me how to spell it, so it’s no surprise when NHS services struggle to help someone with my condition. I’m prescribed lots of  painkillers, but I can’t drive if I’ve taken them and if I can’t drive, I can’t do much.

I’ve had to change career, partly because my impairment was not supported by past employers. I’ve adapted my lifestyle, my hobbies and my expectations of life.

With a bit of consideration and help I’m capable of working, living independently and making a useful contribution to society – as are many, many people with invisible impairments. With just a bit of extra support and understanding our lives could be so much easier.

Find out more about 100 Days, 100 Stories, and read the rest of the stories so far.

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.