TOP 5: Meant well phrases we're 'sick' of hearing

People with invisible conditions are often told things that are meant well but are actually a bit annoying. I don't mean this to sound ungrateful as I know people don't mean to offend and do wish others well but sometimes it wouldn't do any harm to think before they speak. So here is our top 5 list of phrases that we think people should think about before saying.

1. "But you don't look sick"

Too many of us hear this phrase too often, it's common to hear this from people when your disability is invisible. Just because visibly some people appear physically 'fine', whatever fine is, doesn't mean that they aren't disabled. Many people that suffer with invisible conditions have symptoms such as fatigue and chronic pain which is often overlooked by others simply because they can't see it.

2. "I found a cure online..."

There is always that one friend or relative that, whilst is very thoughtful and means well, often smothers you and is quite overwhelming. Whilst we appreciate that people take an interest and try to help out, far too often we hear of online rumours of cures and treatments. Although every now and again it may be an interesting read when you are bombarded with what is often false hope it can get a bit much.

3. "But you were fine yesterday"

People often say this as they don't understand that your abilities and symptoms may fluctuate day to day. Whilst yesterday you may have been a bit better (not necessarily 'fine') today might be one of your really bad days and so you have to cancel your plans. Unfortunately, some friends find this difficult to understand, especially when a bad day coincides with your coffee shop catch up.

4. "I feel so sorry for you"

Please don't. The last thing that people coping with illnesses or disabilities want is anyone's pity. All they want is to be treated 'normally'. I understand that is sometimes difficult to know what to say to someone when they're having a bad time, but instead of offering pity just talk to them normally and they'll open up to you if they want.

5. "I'm sure you'll be fine"

Again. This seems to be a reoccurring theme but what actually is 'fine'? Likewise, we also hope to feel a bit better tomorrow or in the upcoming days and we appreciate that you wish us well but I think being simply 'fine' is a bit too wishful, but one can hope.

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#nomakeupselfies for Cancer Research UK

In six days this UK born viral craze of #nomakeupselfies (women posting pictures of themselves with no make up) raised a staggering 8 million pounds for Cancer Research UK.

The idea behind this is that women post their #nomakeupselfies and men their #makeupselfies on social networking sites along with a caption saying that they donated to the charity by texting in which automatically donates £3 and then nominating their friends to do the same. The success of this trend will enable the charity to carry out 10 more clinical trials.

Viral sensations like this are great examples of not only the power of people on the internet but also the good spirit and kindhearted community that the online community can be.

Cancer Research, who did not initiate this campaign has said that the craze has led to a dramatic increase in the amount of donations that they receive.

Below are some examples of UK celebrities that got involved in this cause!

Left to right: Michelle Heaton, Holly Willoughby, Kym Marsh

Photograph taken from The Guardian

If you would like to donate then please give what you can by visiting the  Cancer Research UK Website.

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International #RareDiseaseDay!

The 28th February 2014 was international Rare Disease Day with over 70 countries across the world hosting events and activities to help raise awareness about rare and invisible diseases. So I thought i'd share some of the events with you! For a full list of events that went on and the success that they had please visit the Rare Disease Day Website.

Official Video

In the UK a variety of events took place on the day including a Coffee morning in London, organised by Advocacy for Neuroacanthocytosis; an information day at Birmingham's Queen Elizabeth hospital and  BABPA Charity Dinner in Leamington Spa, organised by NMC Midlands.

Meanwhile in Australia a Cinema Fundraiser Night happened in Tuggeranong hosted by International Society for Mannosidosis and Related Disease. There was also a picnic event in Melbourne and a Cocktail night in Bathurst, all to raise money and awareness for rare diseases!

As previously said, various events happened across the world including Jazz nights in Italy's capital city of Rome and High School assemblys in New Jersey, USA. So please do check out the website for a full list of all of the activities. BUT it doesn't end there. There are also more events to happen in the coming weeks and months in association with Rare Disease Day 2014 so make sure you keep an eye out for an upcoming event near you and keep spreading the word about rare diseases!

#RareDiseaseDay2014

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Rare Disease Day 2014!

In 4 weeks time on February 28th 2014 it is international rare disease day organised by Eurodis. In the run up to this day various events and promotional campaigns are taking place to help raise awareness about invisible conditions. To find out more about the day and to see the all the easy and simple ways that you can get involved just read the rest of this blog post and then visit their website.

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So what is Rare Disease Day?

"Rare Disease Day is an annual, awareness-raising event co-ordinated by EURORDIS at the international level and by National Alliances and Patient Organisations at the national level.

The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.

The campaign targets primarily the general public but it is also designed for patients and patient representatives, as well as politicians, public authorities, policy-makers, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases.

Since Rare Disease Day was first launched by EURORDIS and its Council of National Alliances in 2008, more than 1000 events have taken place throughout the world reaching hundreds of thousands of people and resulting in a great deal of media coverage.

The political momentum resulting from the Day has also served for advocacy purposes. It has notably contributed to the advancement of national plans and policies for rare diseases in a number of countries.

Even though the campaign started as a European event, it has progressively become a world event, with over 70 countries participating in 2013. We hope many more will join in 2014. Our objective is for the WHO to recognise the last day of February as the official Rare Disease Day and to raise increasing awareness for Rare Diseases worldwide." - Rare Disease Day Website 

Below is  a message from the Rare Disease Day Ambassador - Sean Hepburn Ferrer. 

Interested in getting involved? Check out this video explaining the information pack available for download from the Rare Disease Day website.

On 28th Feb we shall feature a special blog post about the success of the day and hopefully share some of your stories about how you got involved. So please get in touch and let us know how you're planning to raise awareness!

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HandiNews International

This week's blog post features HandiNews International a useful website for people with all kinds of disabilities. We asked them a few questions about what HandiNews is all about so that we can share them with you!

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The Disabilities Meeting Place to Share and Help Each Other

www.handinewsinternational.com

What is HandiNews International?

HandiNews International is an online resource (website and social media) for ALL who are interested in disabilities, to share information and help each other.

How can HandiNews International help me and other disabled people?

HandiNews is a practical way for you to share your stories on our website and help each other - what you've accomplished, what you've learned, what resources you need, what services you might offer, and comment on what others have done. Everyday our Twitter platform brings you news about current disability issues, successes, and a lot more. Our tweets also tell you what's going on in our website - our viewers' latest stories, our featured news, our calendar of conferences, and links to useful resources.

What is HandiNews' aim?

HandiNews International's aim is to help us better our lives and the lives of each other, through sharing and caring, and to teach others to include and welcome us.

How can people like myself get involved with HandiNews International?

It's easy to get involved with HandiNews International. Just "follow" @HandiNews on Twitter, "friend" HandiNews International on Facebook, and bookmark our website. Then share your stories, information, resources, services, thoughts, comments and questions. We're inviting you! Help others, and help yourself!

Got an idea for a future post? Make sure you follow us on Twitter @hideandseekid, like our Facebook Page or email us - hideandseekid@hotmail.co.uk. The next post will go live on the blog on Friday 31st Jan. See you then!

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INVISIBLE DISABILITIES #1: Fibromyalgia

As part of our attempt to raise awareness about all invisible conditions we're starting off with Fibromyalgia...

So what is Fibromyalgia?

Fibromyalgia is a chronic condition of widespread pain and profound fatigue. The pain tends to be felt as diffuse aching or burning, often described as head to toe. It may be worse at some times than at others. It may also change location, usually becoming more severe in parts of the body that are used most.

The fatigue ranges from feeling tired, to the exhaustion of a flu-like illness. It may come and go and people can suddenly feel drained of all energy – as if someone just “pulled the plug”.

The name fibromyalgia is made up from “fibro” for fibrous tissues such as tendons and ligaments; “my” indicating muscles; and “algia” meaning pain. - taken from Fibromyalgia Association UK

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A video created to help raise awareness about Fibromyalgia:

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Mission Statement: The National Fibromyalgia & Chronic Pain Association unites patients, policy makers, and medical and scientific communities to transform lives through visionary support, advocacy, research and education to develop affordable and accessible treatments and cures for fibromyalgia and chronic pain illnesses.  - NFMCPA 

Local Support Groups in USA and across Other Continents. 

If you're interested in helping to raise awareness about Fibromyalgia then click this link to find out how you can get involved in awareness day events near you, wherever you are in the world! If you're situated in the USA click here to find events in your State!

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Finally, if you'd like to know more information about Fibromyalgia please see our previous blog post about Fibromyalgia Awareness Day 2013!

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EDS Awareness Month - Week 2 - EDS Symptoms

This week's post is dedicated to some of the main symptoms that people with EDS suffer with. 

Hypermobile joints

People with EDS typically have loose joints, which means the limbs bend more than usual. This can cause floppy joints in infancy, and some affected children take longer to sit, stand and walk.

Hypermobility EDS is the most common form. The joints can sometimes be very unstable and may dislocate easily.

In other forms of EDS (such as kyphoscoliotic and arthrochalasia EDS), the looseness of the joints tends to be more disabling and dislocations may happen frequently. Joint instability may occasionally lead to osteoarthritis, but this is uncommon and occurs mostly in adults.

Abnormal skin

In all forms of EDS the skin is stretchier than normal. It easily pulls away from the body and springs back once released (this is best tested at the neck, elbows or knees).

Bruising of the skin is common in most forms of EDS because small surface blood vessels may be fragile and break easily.

In classical EDS, skin can also be extremely fragile and can split easily, especially over the forehead, knees, shins and elbows. The scars can be wide and papery.

In the very rare dermatospraxis form of EDS, the skin is severely fragile, saggy and wrinkly. There may be obvious looseness of the facial skin.

In vascular EDS, the skin is often transparent, particularly over the chest, and the veins underneath are easily visible. People with other forms of EDS may also have slightly thinner skin than usual.

Fragile body tissues

Increased stretchiness and fragility of ligaments, tendons and joint tissues makes them prone to overstretching or even tearing (ligaments are tissues that connect bones together at a joint, and tendons connect bone to muscle). Therefore, limbs may be floppy because they are not properly supported.

In vascular EDS, certain body tissues and organs are particularly delicate. Blood vessels, bowel walls and lung linings may be easily torn, causing internal bleeding. Pregnancy in women with vascular EDS can be dangerous because the womb lining is fragile.  

Information taken from the NHS website.

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Jodie is only 19 years old and has Ehlers-Danlos Syndrome, Type 3 Hypermobility. However she wasn't diagnosed until she was 16 after numerous long stays in hospitals at Newcastle and London and multiple major operations. Life is not easy for Jodie or her family yet she still wishes to raise awareness for EDS as it is such a rare, cruel and debilitating disease that has seriously affected her in so many different ways. Jodie has been through so much but faces everything with a belief that she can make a difference and she is the epitome of courage in the face of adversity.


Ehlers-Danlos Syndrome (EDS) has drastically affected Jodie's life. Despite all that she has and continues to face, Jodie is a true fighter and always has a beautiful smile! Jodie feels passionately about helping others and hopes that by sharing her story with you, this will not only help to raise awareness of EDS but will also inspire you to support The Sick Children's Trust; a charity which has been there for Jodie's family during numerous long hospital stays. Please support Jodie's Journey and help us make a difference to unwell children and their families.

Information taken from the Jodie's Journey Website.

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Here is how Natalia Carrasco is trying to raise awareness, she's creating daily EDS facts and posting them online for us all to share. Please see our previous blog post for more facts:

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Find Me Good Care.

Find Me Good Care ...

Find Me Good Care is a free online resource launched at the end of last year by the Social Care Institute for Excellence (SCIE) – a national charity established to improve care across the UK.

This week's post is dedicated to Find Me Good Care, a charity that aims to help people in their struggle to find the good quality care that their family member or indeed themselves may need. The first stumbling block is often finding where to start? It's especially hard if you don't know what sort of care and support is available or what they specifically need. Find Me Good Care was established to help people in these situations and includes advice and guidance on what to look for, how to pay, what you options are etc, as well as a local directory service where users can provide feedback.

The user friendly website www.findmegoodcare.co.uk can be tailored to individual needs; users can type in their postcode, specify what type of care they are looking for, and the results will return local services and council contacts. There is also lots of useful information for specific care needs.

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Ann Macfarlane OBE, leading Disability Rights and Equalities Consultant: “The main issue with finding and paying for care is that regardless of how much or how little funding you have available, you need good information and advice on spending it wisely. It’s taken me a long time to work out how the system works, which is why something like Find Me Good Care is really helpful for people. Many newly disabled people aren’t as aware of what their options are, and social care is just one of the systems that a person who requires support might need to understand.

Andrea Sutcliffe, Chief Executive of SCIE: “We know that the care system can be confusing and our research has confirmed that most people are unaware of their options - that’s why we’ve created this service. We have brought together comprehensive advice and guidance to help people take those all-important first steps in navigating the care and support system. 

Oh and finally, hope you all have a great Easter and stay tuned for next week's Sunday post!

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Rare Disease Day 2013!

"February 28, 2013 marks the sixth international Rare Disease Day coordinated by EURORDIS and organised with rare disease national alliances in 24 European countries.

On and around this day hundreds of patient organisations from more than 60 countries and regions worldwide are planning awareness-raising activities converging around the slogan “Rare Disorders without Borders”

Activities will take place across Europe, all the way to Russia, continuing to China and Japan, in the US and Canada, and as far as Australia and New Zealand!" - Rare Disease Day 2013

There are so many ways you can get involved and help to raise awareness! Just click the link below to find out more about how you can get involved with the following activities:

• Organising an Event
• Share promotional material
• Tell your story
• Get active on Social Media (like us!)
• + Many more ideas about supporting the campaign!

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It's 2013 - Welcome back!

Hello everyone! First of all, i'd like to apologise for the significant lack of posts in recent months, the reasoning behind this shall all be explained in an upcoming blog post. However, we're back now with weekly content being uploaded!

That's right...

 a new blog post will be uploaded every friday 1pm UK time! 

I'm looking for your suggestions and contributions to be uploaded. Whether its a personal story about coping with the hectic Christmas period, some useful info you've recently come across or some inspiring and encouraging messages we'd love to hear from you!

Get in touch via email: hideandseekid@hotmail.co.uk or tweet us: @hideandseekid!

This is your chance to help us to reach out and raise awareness about invisible disabilities. 

Also, i'll be changing the layout of the blog so do let me know what you think!

Please share this blog post with your friends and family to let everyone know that we're back up and running, raising awareness about invisible disabilities.

Thank you.

Next Blog: "Why so quiet?" will be up on Friday 18th Jan!

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Our (early) New Years resolution!

We are very sorry for the lack of posts and content recently but there will be a big update coming soon explaining our absence!

We will relaunch the blog in January and will post every Wednesday of each week!

In no way has his blog or this cause been forgotten!

Stay tuned for future updates.

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#iiwk12 - Day 2

Social Sites

Today's post will be about the various social platforms that you can check out to help raise awareness for Invisible Illness Week. As mentioned yesterday you can check out their twitter and Facebook page, but what can you say?

Well here you can draw up some inspiration from some of the many blogs featuring posts about the Invisible Illness Campaign:

Invisible Illness Week: Your Blogs for the Cause

Amy - www.lifeislikeamusementpark.blogspot.co.uk

Witty Gritty Invisible Girl - www.therevertedbutterfly.blogspot.co.uk

Seeking Equilibrium - www.rosemaryl.blogspot.co.uk

Merry - www.hopeismyanchor.com

www.allergictolifemybattle.wordpress.com

These are just a few of the great blogs where you can gain inspiration and knowledge about all kinds of invisible conditions, so make sure you check out the Invisible Illness website and see some others!

And ofcourse make sure you download a blogger badge!

So yesterday I told you to tweet..but what can you tweet about?

Well here are some of the 'Things to Retweet' suggested by the Invisible Illness Website. You can find more facts and statistics on the website!

"Facts to Tweet About Invisible Illness

RT @invisibleillwk #iiwk12 Fact #1 Nearly 1 in 2 Americans (133 million) has a chronic condition. Not U? It’s someone U luv! http://ow.ly/6Otw

RT @invisibleillwk #iiwk12 Fact #2 About 96% of illnesses are invisible. No visible signs and no assistive device used. http://ow.ly/6Otw

RT @invisibleillwk #iiwk12 Fact #5 Plp with illness are young! 60% are between the ages of 18 and 64http://ow.ly/6Otw

RT @invisibleillwk #iiwk12 Fact #6 By 2020, about 157 million Americans will be afflicted by chronic illnesses. http://ow.ly/6Otw

RT @invisibleillwk #iiwk12 Fact #7 90% of seniors have at least one chronic disease and 77% have two or more chronic diseases. http://ow.ly/6Otw

RT @invisibleillwk #iiwk12 Fact #8 Depression is 15-20% higher for the chronically ill than for the average person. http://ow.ly/6Otw

RT @invisibleillwk #iiwk12 Fact #11 Invisible illness includes #autism, #bulimia, #migraine pain, #arthritis, #bi-polar disorder #depression. http://ow.ly/6Otw

RT @invisibleillwk #iiwk12 Fact #15 19 million of plp who are severely disabled do not use a wheelchair, cane, crutches or walker http://ow.ly/6Otw

RT @invisibleillwk #iiwk12 Fact #19 Over half of the chronically ill say the worst thing someone can say is “you look great.” http://ow.ly/6Otw"

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#iiwk12 - Day 1

Sorry for the lack of posts recently.. but like many of you we have been engrossed with the success of the paralympics! Just before we get on to the main topic of today, we'd like to echo all of those comments and congratulate all of the Paralympian athletes that took part in the game, they were a true inspiration to all! 

Some of you may know that to show our support for Invisible Illness Awareness week (which is this week!) we are uploading a new blog post every day! So today's blog post is... 

An Introduction

Many of you may have come across Invisible Illness Awareness Week (#iiwk12) but for those that haven't here is a quick recap. It is a week dedicated to raising awareness about invisible conditions. This week there is loads of stuff going on online which you can get involved with to help raise awareness!

Including...

1) Tweet @invisibleillwk with the hashtag #iiwk12 and help get Invisible Illnesses the recognition they deserve! 

2) Tune in to the virtual conferences on the Invisible Illness Week website!

3) Blog about the week and link it to their website where you can read other entries!

4) Like their Facebook page - http://www.facebook.com/InvisibleIllnessWeek

5) Share this image:

There are many more ways in which you can get involved so make sure you check out their website and tune in here everyday this week from 10.00am BST to read our latest blog post about #iiwk12!

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News On Wheels

Before I explain more about 'News On Wheels'.. here is a quick social network update from HideAndSeek.

Make sure you follow us on twitter: @hideandseekID

Like our Facebook Page: HideAndSeek Disabilities

Drop us an Email: hideandseekid@hotmail.co.uk 

News On Wheels...

News On Wheels is an iniativie set up by Blake Leitch who is trying to encourage 'disability journalism'. This would involve disabled people writing content about current issues or offering advice to others in a similar position to themselves. You can find out more about Blake's initiative by checking out his website: News On Wheels and we'll feature more about our involvement with Blake's project soon! 

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