EDS Fact: Number 84

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EDS 84

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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

EDS Fact: Number 82

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EDS82

 

What not to say to someone with a chronic illness.

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Living with a chronic illness is tough. Daily life can be a struggle and the stigma and lack of understanding that often comes with disability can add to the challenge. Not only can it be difficult for the ill person, but often other people don’t know how to act or what to say to someone who is living with a chronic illness so I created this list of what not to say!

What not to say to someone with a chronic illness.

  • But you don’t look sick.
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    Not everyone who is sick has physical signs. Many of us can look completely healthy on the outside but if you could see inside it would be a different story. Many of us don’t want to look ill so we do what we can to look as “normal” as possible, like putting on make up. Just because you can’t see something it doesn’t mean it isn’t there.
  • Why haven’t they made you better yet?
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    If we could be made better then I think we would be better by now. A lot of us have incurable conditions and treatment is very limited so having to try and explain why we aren’t better can be very frustrating and bring up all sorts of emotions that we have this for life.
  • When are you back at work?
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    Have one good day and then everyone is like “so when are you going back to work?” I would love to go back to work but please do find an employer who is willing to accommodate my multiple hospital appointments per week, who understands that today I just can’t physically get out of bed so I won’t be in, who doesn’t mind if I pass out and stop breathing due to extreme pain levels so I don’t get my work load done. There are good days and bad days but at the moment there are more bad days than good so it wouldn’t be fair for me or my employer for me to be back at work. Being sick is a full time job, 24hours a day, 7 days a week, 365 days a year.
  • You’re too young to be sick.
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    Hang on let me just get my ID out and tell my multiple conditions that I’m too young
  • It must be great sitting and doing nothing all day.
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    Contrary to popular belief it’s not fun just sitting or lying in bed all day in lots of pain, I would much rather be at work and doing something productive. If I have a good day it doesn’t mean I’m cured and I can go back to work tomorrow.
  • It’s all in your head.
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    For someone with a chronic illness the most powerful words someone can say to you is “I believe you”. It isn’t all in our head.
  • Have you tried…
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    I appreciate you are trying to find a solution and I will do whatever I can to help myself but please remember that everyone is different and what works for one person may not work for another. If a simple dietary change could cure me I think I would have found it by now.
  • At least you don’t have…
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    Everyone is fighting a battle you know nothing about. Yes there are people worse off than me and I am exremely lucky but there are also people better off than me. I don’t want people feeling sorry for me, I just want understanding.
    “Saying someone can’t be sad because someone else may have it worse, is like saying that someone can’t be happy because someone else may have it better.” – Unknown

    I hope that this little piece helps.
    Love & Hugs, Charlie xx

EDS Fact: Number 71

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EDS 71

Today’s fact is about Chronic Intestinal Pseudo Obstruction which is something I suffer with and the reason I have just come out of hospital.