Making her invisible... visible! - Fundraising Event

"Emma Sanderson returned from holiday with a bug which became an unusual illness which she wants to help others to conquer via a charity dinner

Emma Sanderson’s growing up in Longridge was as normal as anyone’s – school at the CE primary and then Longridge High where she gained great results before studying A-levels at Clitheroe Royal Grammar.

Now, aged 21, she works at the primary school at lunch times and is a volunteer helper every Thursday at St Paul’s Walkie Talkies children’s group.

However, in the summer of 2007 her life changed dramatically after a holiday in Majorca.

“It would never remain the same after I returned with a stomach bug and was unable to keep any food down at all,” she recalls.

“In the October, I was admitted to Blackburn Hospital and virtually remained there until the December. Countless tests and exploratory operations where carried out – I even travelled to Sheffield for a cap-endoscopy, for which you swallow a capsule with a remote controlled camera inside it and it takes pictures of your insides as it travels through your body!

“But no diagnosis could be made as to what was causing these stomach problems – some even saying ‘maybe it was in her mind.’ It was an extremely hard time for everyone involved.”

At the end of 2010 a consultant at Blackburn advised Emma’s family to pay to see a professor in neurogastroenterology in London. Within an hour of meeting him, the professor had diagnosed Emma with EDS type 3, a hereditary condition where the collagen in the body is “too stretchy”. In Emma’s case the condition had also moved into her gastro-intestinal tract and internal organs." - Click here to read more

Inspired by Emma's Story? Want to help out some more?

Emma is organising a dinner and disco for fundraising!

Where: Ferrari's Country House Hotel, Longbridge

When: 13th July 2012

Price: tickets are £25

If interested let Emma know via email: emma.sanderson@me.com

Emma "It will be a great fundraising event and help to get MY INVISIBLE, VISIBLE!"

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Bracelets - INVISIBLE NO MORE

Click here to order your bracelet!

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Book: "But You LOOK Good" by Wayne Connell

Do your loved ones have a hard time understanding your chronic illness or pain, because to them you LOOK fine? But You LOOK Good! is a 56 page book that gives those living with chronic illness and pain a voice about how they feel, what  they need and how others can be an encouragement to them. It is a convenient, informative way to educate loved ones about what people living with ongoing illness and pain struggle with, fight for and need from their friends and family. It is easy to read, gives practical ideas on how loved ones can be supportive and is not too long for readers to lose interest! - Click here to read more and order the book

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"But You LOOK Good"

Wayne Connell - Founder and President of Invisible Disability Association (IDA)

"Have you ever shared details about your chronic illness and pain and the difficulties you experience daily, and had a person say in response, “Well, but you LOOK good?” Many people have experienced this situation and heard similar phrases that seem harmless, unless you are the one who would give up “looking good” any day to have moments of feeling good.

Do you ask a friend or family member living with chronic illness or pain how they are “feeling” every time you see them or talk to them? It tends to place your loved one in a difficult spot. They either lie to you and say they are “feeling fine,” or they tell you the truth. They feel sick and in pain, day after day. How about asking them how they are “doing” instead? Maybe they are “doing” okay, even though they are in pain.

As my wife, Sherri, explains “Sometimes it’s what people say that hurts more than the illness.” Most people do not say mean things on purpose, yet the things they say can come across as uncaring to a person journeying with illness and pain. Living daily with illness, pain and disability truly is a lifelong expedition. As with any expedition, we need to learn the language of the place we will be visiting. We need to learn what to say and what not to say in order to make sure we don’t end up lost or accidentally insulting someone.

In order to address and teach this new language of invisible disabilities, I wrote a booklet called, “But You LOOK Good, How to Encourage and Understand People Living with Illness and Pain.” It includes many ideas gleaned from my wife’s journal. It will help you to learn how to converse in your relationships with people touched by illness, pain and disability.

Invisible Disabilities Association Ambassador Mike Pierce (AKA Antarctic Mike) has learned this language of invisible disabilities. Here is his story." - Click here to read the rest of Wayne's story

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'You Don't Look Disabled'

At 24, Holly Ferrie has to cope with disruption to her life on a scale few of her age could recognise. A complex and as yet not fully diagnosed arthritis-related condition causes her almost constant pain in her legs and feet. On occasions, her legs are seized by agonising spasms.

Yet Ferrie fears she doesn’t seem disabled enough. People who don’t know her, she says, find it hard to comprehend the severity of a condition that afflicts someone so young and is not immediately obvious. “They either get very confused or think I’m faking, or say, ‘I hope the injury gets better soon’, things like that,” she said. “I’ve lost some friends over it. Pain is invisible and hard for people to understand.”

Such attitudes, Ferrie contends, have become more common and more vehement since the government began arguing for wholesale reductions in disability-related benefits on the basis that many were falsely claimed or received by people who were exaggerating their symptoms or whose health had improved.

Another cruel paradox is that she has never qualified for such benefits, even when housebound for six months when her condition first became severe in late 2009. She now has a well-paid job as a web developer for Surrey University in Guildford. “It’s really upsetting to become part of this group and then find yourself vilified,” she said. “The most annoying thing is that I pay quite a high rate of tax and people seem to think I’m a scrounger. People don’t seem to be getting the message that not all disabled people are out of work.

“I’ve found that as my health has improved and these government messages have been getting stronger, I’ve been getting more abuse. When you’re using a walking stick and clearly stumbling people are more likely to help you. But if you don’t look like you’re in pain people are more likely to attack you. I’m almost scared of looking healthier, because people won’t believe me.”

Ferrie says she is most likely to be insulted or abused on the street after a media article on supposed welfare abuse by the disabled. On a recent occasion, a group of students refused to share a taxi with her, she recounts. “After the next articles came out I tweeted, ‘I wonder how long it’s going to be this time before someone says or does something to me?’”

It took five days. On another occasion, she was rushing for a bus about to depart from a bus garage when her way was blocked by a staff member standing in the vehicle’s doorway. “I said to her, ‘Excuse me, can I get on the bus please?’. She looked down at my stick, looked up at my face and said, ‘No. You should have walked faster.’”

Ferrie explained why she could not move more quickly, and met a response dripping with more scepticism: “Oh, really?”

“In the end I had to push past her,” Ferrie said. “I burst into tears on the bus. I couldn’t believe someone would say that to me.” Mark Mayer, 38, from Dorking in Surrey, says he faces a similar problem in that his cerebral palsy is not always immediately obvious. In recent months he has found himself increasingly challenged when using disabled parking spaces or other facilities.

“I’ve had people say, ‘You don’t look disabled’. I’ve had people asking to look at my blue badge to make sure it’s mine. I know people who won’t park in a disabled bay anymore because they don’t look disabled. It’s more noticeable now. Every time it happens I ask myself if I’m making a mountain out of a molehill, but not so long ago I don’t think I had to deal with this stuff.” - Same Difference

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#PrayForMuamba

Fabrice Muamba a 23 year old footballer was rushed to hospital yesterday (17/03/12) after what appears to have been a heart attack on the pitch in front of 36,000 spectators in the UK. Muamba is now in a critical condition in hospital. We pray for Muamba and his family and hope that he has the strength to pull through.

Former team mate Gary Cahill

#PrayForMuamba 

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Fibromyalgia: An 'invisible' disability

"You look fine...." Such words are usually intended as a compliment. Sometimes they provide reassurance. But they can also produce confused feelings when someone is silently suffering. This problem is not unique to fibromyalgia. Parallels are easily drawn with other conditions with controversial diagnoses and uncertain cause, such as chronic fatigue syndrome, posttraumatic stress disorder, and premenstrual syndrome. These disorders can be considered "invisible" disabilities because they are virtually impossible for casual observers to detect.

What does it mean to contend with a seemingly invisible medical condition? It does not always work against us, for we can "pass for normal" when we want to. At other times, however, it might be helpful to have a large sign on our forehead saying "PAIN" or some such thing.

In what follows, I address why fibromyalgia has been nicknamed the invisible disability and how this has been changing. I also discuss issues relevant to having an invisible disability. For those of us suffering with pain and fatigue, it feels anything but invisible. What I propose are ways to make our experience more visible, in a sense, so that we can better confront it. Unlike illnesses with 'objective' measures and agreed-upon treatment programs, with fibromyalgia, we are the ones best able to detect the vagaries of our condition. It is therefore up to us to discover ways to understand and improve our situation. As we become more versed in the determinants of our symptoms, the seemingly invisible quality of our condition can work to our advantage. Ideally it becomes our decision when and how to make our experience visible and when to keep it invisible... " - Deborah A Barrett

Click here to read more about the visibility, invisibility and how to make Fibromyalgia visible!

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Jillian's EDS Video

A new video created to educate others about EDS. Thanks Jillian!

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Rare Disease Day 2012

On the 29th February, the Royal Holloway University of London hosted the largest UK rare disease day event. Here are some images about the day and how it helped to raise awareness about rare diseases.

As the images show there was a great turn out at the event including "Helene, who suffers from rare disease Ehlers-Danlos Syndrome, made history by becoming the first woman to win a Paralympic gold in the arms-only single sculls for Great Britain."


To read more about the day click here

Share your rare disease day stories by emailing them to us at - hideandseekid@hotmail.co.uk

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