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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Awareness Needed…

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Last night I was taken to hospital by ambulance after passing out and being unresponsive due to severe pain levels. Unfortunately once again I was faced with people who had never heard of Ehlers-Danlos Syndrome and didn’t know how to treat me. I was pricked with needles numerous times, even after saying I have a connective tissue disorder and have fragile veins and usually need a more permanent line for IV’s, I was left for hours without pain relief as they didn’t know what to give me after I had a cardiac arrest in November and unfortunately there was not a lot that could be done. I do not blame the medics as they were very busy and the staff were all very kind and wanting to help, but this shows how we need to raise more awareness of Ehlers-Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome and all the other “rare” and invisible conditions out there. We need more specialists locally, not just in London. We need a clear care plan for when things like this do happen. We need help. We need AWARENESS!
#InvisibleIllnessVisibleHope

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I may not look sick on the outside but on the inside there is a different story so I decided to take a picture where I look “well” and write some of the conditions and symptoms I have that are invisible.

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Together we can make a difference ♥

Making & maintaining friendships when chronically ill.

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Making & maintaining friendships when chronically ill.

Making friends can be a difficult and daunting experience for anyone, never mind when you are sick. From childhood I can remember finding it difficult to make friends, especially seeing as though I was fat, ginger, had glasses and braces so I was basically a bullies dream. There are the awkward situations when you are socially forced to make friends, like the first day of school when kids look around the room looking for potential “BFF’s” and moving to University and into a house with people you may have never met before. As you get older you don’t really have situations like that so making friends becomes harder and harder, especially if you are socially awkward like me. It’s not just about making friends, it’s about maintaining those friendships you already have and this can be difficult when you are chronically ill.

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Since being diagnosed with many invisible illnesses my social life has understandably gone downhill, much like my health. I used to be the life and soul of the party and was always up for a laugh. Thursday, Friday, Saturday and sometimes even Sunday nights were spent getting dressed up and having fun with my friends. We would go into town and dance and drink the night away, go to theme parks, out for meals, on crazy holidays and adventures; then I got ill. My health deteriorated and I was no longer able to do the things I used to do. A lot of the friends I used to do these things with slowly began to disappear. I would be, and still often am, invited on nights out and would have to decline due to my ill health. I worry that people think I am making excuses but I’m really not. I struggle to make plans because I hate letting people down and what I do each day depends entirely on my health, so if I have to cancel then I am truly sorry. I grieve for the life and friendships I used to have, but I think that is a part of being ill. You begin to realise who really are your friends and who never really were to begin with. The true friends make changes and realise that you can’t do what you used to do and instead spend time with you in a different way, like watching TV shows or just being there with you whilst you are unwell. I can imagine that it’s also difficult for my friends. I am no longer the crazy party animal that I used to be and I guess that can be hard for people to take in and accept but I am still me and I do still like to have fun, it’s just that I have had to adjust what I can do for fun now. I am extremely grateful for the friends who have stood by me through everything. I may not have as many “friends” as I used to but I sure know that I have the best ones and that’s all I need!

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As I have said a lot of my old “friends” disappeared out the picture when I got sick, however I have also made many new friendships through being sick. When you are ill you spend a lot of time at home and this often leads to browsing the internet and social networks. There are many support groups online and these have been a blessing to me. I have met numerous people, many in my local area, who are going through similar situations to me and I have developed amazing friendships with them. I have even made friends when I have been admitted to the hospital. I hate that these friends are unwell and I would do anything to take away their pain but unfortunately I do not have the power to do this, but I do have the power to be there for them. I guess it’s sometimes easier to maintain a friendship with someone who is chronically ill themselves because you can understand each other and what you are both going through. If you make plans with someone and they have to cancel then you fully understand as you often find yourself in that position. As much as healthy people try to understand, I think that it is always difficult to understand a situation unless you are going through it yourself. The friendships I have made through being sick are often very close ones because we share a lot with each other, including embarrassing things like our bowel movements! I may not get to see these friends as often as desired because we all have lots of medical appointments to attend and if we do make plans one of us could unfortunately be too sick on the day. They say that every cloud has a silver lining and these friendships are my silver living of being ill. Our paths may have never crossed if I hadn’t been diagnosed with EDS, PoTS and the other horrible conditions I live with and so for that I thank you my dodgy genetics!

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Love & hugs,
Charlie xx

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

Crohn’s and Colitis Awareness Week.

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December 1-7 is Crohn’s and Colitis Awareness Week. The mission is to increase awareness worldwide for these disabling digestive diseases that are often misunderstood or unknown.

Personally I don’t suffer with Chron’s or Colitis but I do suffer with other gastrointestinal problems and know how hard it can be. Chron’s and Colitis are horrendous conditions and can greatly impact the sufferer’s way of life. I know a few very strong people who suffer with these diseases and they inspire me every day. Share the purple ribbon.

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Charlie x

EDS Fact Number 3

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My disgusting visit to hospital!

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On Wednesday night I rang 111 due to unbearable pain and passing black stuff. A paramedic was sent and my blood pressure was high, which is a first for me as I usually have low blood pressure. An ambulance was sent and I was taken to Queen’s Medical Center, Nottingham. I explained to the paramedics that I have recently been diagnosed with EDS and PoTs but they weren’t very familiar with them. I was given paracetamol and entonox in the ambulance, also known as gas and air, which is what they usually give pregnant women to help ease their labour. I was taken to A&E and after a struggle to get a cannula in (they ended up using my finger, ouch!) I was given IV morphine and cyclizine. I saw a few doctors and nurses during my stay and had to explain again about EDS and PoTs. I was moved to a surgical ward and was told the consultant who operated on me in May was on call so I would be seeing him in the morning. At first I thought it was a good thing as he is familiar of me but then I remember that he doesn’t have much of a bedside manner and probably wouldn’t listen to me about my recent diagnosis; what happened next I was absolutely disgusted with.
I had never been so disgusted in my life. The surgeon who operated on me in May to remove my colon came to see me. He just stormed up to me with his little team and humiliated me. He just told me that my blood tests are okay so there is nothing wrong with me and I should go home, in a very aggressive manor. I told him that since I last saw him I have been diagnosed with ehlers-danlos and before I finished my sentence he butted in with “touch your thumb to your elbow then!!!” So I did and then he kicked off to his team and said “What is ehlers-danlos syndrome? Just bendy joints!” To which his colleague said “It’s a faulty collagen issue” and he then again butted in with “well how is it diagnosed? Can I do a blood test?” As if he didn’t believe me and his colleague explained diagnosis. I tried to tell him what Prof Aziz explained to me about my food becoming stagnant due to GI issues and creating bad bacteria which is causing me pain as my body is fighting against itself and Prof Aziz says I need to be on permanent antibiotics etc but before I got to he shouted “well its nothing I can do so get that drip down and get home!!!”
I can’t describe how I felt. I felt like a piece of sh*t. I was hysterical in the hospital and felt worthless. They didn’t even take a sample of the black stuff I was passing.
Unfortunately, people with EDS, PoTs and other secondary conditions seem to know more about the conditions than most health care professionals. This is wrong on so many levels and I am eager to spread awareness and improve people’s knowledge of these conditions.
Charlie x

Cannula in my finger which was painful. You can see that my fingers are also turning a greyish colour.

Cannula in my finger which was painful. You can see that my fingers are also turning a greyish colour.