Not all disabilities are visible…

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So lets be honest, although most of us probably don’t want to admit it, being judgemental seems to be human nature. I have judged people and I have been judged but we don’t know everyone’s story and it’s a sad trait to have. I guess a lot of it is to do with stereotyping. There are so many stereotypes out there and these seem to get passed from generation to generation and it really needs to stop.
I went to a hospital appointment recently with my carer and was waiting to park in the disabled bay. I’m a 25 year old woman with invisible disabilities and I was judged by two different people whilst waiting. A gentleman who was coming out of the bay wound his window down and made a hand gesture to call me a “w*nker” and an elderly woman who must have wanted the space called me a “silly cow” and waved her blue badge at me so I waved mine back at her! A similar thing happened to my friend recently. She is 18 and she was waiting for a disabled bay and an elderly woman wound her window down and told her that those bays were reserved for disabled people so she showed her badge and the lady then said that they were for “elderly people” and that she should go and park elsewhere.
Think about it. Have you been judged? Have you judged someone? We don’t know everyone’s individual story.
The really thin girl you assumed was anorexic may be desperately trying to put on weight or could be fighting an invisible illness that makes gaining weight difficult for her.
The guy you saw on crutches struggling to walk last week who is walking today may be suffering with a condition that varies massively, it doesn’t mean he was faking it.
Please try not to stare at the young girl in the wheelchair trying to figure out what is wrong with her.
The guy who has used the disabled toilet but looks “normal” could be suffering with IBD.
Not all disabilities are visible. Not all disabilities are the same. Think before you judge.

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Love & hugs,
Charlie xoxo

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EDS Fact: Number 82

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EDS82

 

Invisible Illness Week!

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“This week is Invisible Illness Week. The Ehlers-Danlos Support UK motto is ‘making our invisible visible’, but this has a multitude of meanings.
There are 7 different types of Ehlers-Danlos syndrome, but it can often feel that the condition is an invisible one in wider society and within the medical profession. How many times have you had to explain to someone what EDS stands for, or what your condition is to doctors, A&E staff, colleagues or friends? It is vital that we work together to raise awareness of Ehlers-Danlos syndrome and speed up access to care, consistency of treatment plans and support for patients. Knowledge and understanding of all types of EDS within the medical profession, would go a great way to ensuring patients are safe, receive the correct method of medical investigation for their type of EDS, and have confidence in their care. EDS UK are working hard with our medical advisory panel to help to increase awareness at the level it is needed.
For many in the community, their EDS is invisible and their struggle with pain, fatigue, gastro issues and more can be made even more difficult by the fact that others cannot understand it. The limitations that EDS can place on us are not easily understood by others who cannot see beyond a one-dimensional view of illness. It can be difficult for patients of all ages, who perhaps to others ‘look fine’, but struggle with their EDS at home, work, in school, in social situations or even to stand on their daily commute home. Having to justify why you need to take that seat on the bus, or explain to your friends why you can’t make it this evening, can be tiring and upsetting for many. This is where we need to work together to change not only awareness of EDS and invisible conditions, but challenge attitudes towards disability and understanding.
The nature of EDS can mean that we sometimes have visible symptoms; one day fatigue and dislocations could mean we require supports, crutches, braces or a wheelchair, where a day or two later this isn’t the case. The fluctuating nature of EDS can be difficult for others to understand and take seriously. With vascular EDS, the serious nature of the condition can be difficult for doctors, paramedics and medical professionals to understand unless bruising or bleeding are obvious, and they have knowledge of how to carefully manage patients.
Not all types of EDS are invisible and can have very visible symptoms. However, the multi-systemic nature of the condition can be invisible due to lack of research, knowledge and awareness, and this can have a detrimental impact on treatment, care and support for patients.
The battle is ongoing, and paved with obstacles, but together we can achieve great things. Please join EDS UK in making our invisible visible, for this week and the next. Together we can make a difference. For more information about joining the charity, finding support, medical information or getting involved, please visit www.ehlers-danlos.org
Share this post, share your experiences and each tell 10 people about EDS. Image the difference you can make?”
xxxx

Awareness accessories!

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I decided to make some bracelets and ribbons to try and spread some awareness of invisible illnesses.
There are 3 styles of ribbon broaches and 2 styles of bracelets.
Ribbons are £2
If you buy 4 you get a 5th one free!
Beaded bracelets are £3
Wool bracelets are £1.50
If you would like to order any then please comment or message me.
Styles may vary slightly from the pictures.
Any donations will help towards my medical costs.
Payments via PayPal
www.gofundme.com/charlieharris

Ehlers-Danlos Syndrome Awareness – Classical EDS

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Ehlers-Danlos Syndrome Awareness – Classical EDS.
This is a short awareness video about Classical Ehlers-Danlos Syndrome, the causes and signs and symptoms. May is EDS awareness month. Please feel free to share and help raise awareness of EDS!

Thanks for watching, Charlie x

Ehlers-Danlos Syndrome Awareness. Vascular EDS.

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Ehlers-Danlos Syndrome Awareness. Vascular EDS.
This video has a short explanation of what Vascular EDS is, the signs and symptoms and the causes. Please feel free to share to raise awareness of VEDS!

Thanks for watching, Charlie x