Not all disabilities are visible…


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.

Love & hugs,
Charlie xoxo


EDS Fact: Number 82





What not to say to someone with a chronic illness.


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.
    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?
    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?
    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.
    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.
    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.
    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…
    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…
    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

David is fundraising!


“Right guys I need your help to get the word out, when I return from collecting the game at midnight on launch day I will be attempting a solo 48hr live stream on www.twitch.TV/Crosby85.

The reason I am attempting a 48 hour stream is to raise awareness of the rare condition Elhers-Danlos Syndrome (EDS). EDS is a rare genetic condition in which a gene mutation causes the connective tissue in the body to be abnormal. People with EDS have faulty collagen and collagen is the glue that holds our bodies together, so very little escapes symptoms. It is a life altering, debilitating condition and causes it’s sufferers lots of pain. There is no cure and very little treatment available and unfortunately it is a progressive condition. There is a lack of knowledge about EDS within the medical profession which means that it is misdiagnosed and overlooked. In order to raise awareness through my stream I will be sharing a fact about EDS every hour.

My girlfriend lives with this condition and has inspired me to try something out of the ordinary to raise some money for her (, for the eds UK charity ( that is set up to support people with EDS and also the invisible friends group ( that my girlfriend is part off, this is a vocal/support group that has been put together to help those with “invisible illness’s” .

Last year I managed to complete a 24hr Destiny live stream but want to push myself even more this time around. Doing a 24 hour stream was hard due to having to concentrate on the game for so long without a substantial break, this means that I will need all the help I can get to complete 48 hours! I will have some friends helping me get through the 48 hours but if I can get people to watch the stream it would spur me on to get to the end. Please share this post as I need to get as many people behind me for this as I possibly can.”


Please share to help get the word out!


Making & maintaining friendships when chronically ill.


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.


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!


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!


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

“Joint Hypermobility: Emerging disease or illness behaviour?”



“Joint hypermobility syndrome is a common clinical entity which is much misunderstood, overlooked, misdiagnosed and mistreated. It was first described in the 1960s as a purely musculoskeletal condition due to joint laxity and hypermobility occurring in otherwise healthy individuals. Some four decades later it is now perceived to be a multi-systemic heritable disorder of connective tissue with manifestations occurring far beyond the confines of the locomotor system and with ramifications potentially affecting most, if not all, of the bodily systems in one way or another.

Most authorities in the field find it clinically indistinguishable from the Ehlers-Danlos syndrome – hypermobility type (formerly, EDS type III). In >50% of patients the diagnosis is delayed for ≥10 years. Failure to diagnose and treat the condition correctly results in needless pain and suffering and in many patients to a progressive decline in their quality of life and in some to a loss of independence.”

So I’ve just read Professor Grahame’s above journal and I actually have tears coming down my face. It is so strange to read something and just think “Wow, this describes exactly how I am, how I feel and what has happened to my body”. This has explained so much to me and if you haven’t read it I highly recommend that you do, in fact it would mean a lot to me if you could read and share this to help me in my journey to raise awareness. Professor Grahame is such a fantastic man and his work for those with EDS is just brilliant.
“To dismiss disparate symptoms as ‘illness behaviour’ is, in my view, wrong and does much disservice both to our patients and to our reputation as a profession.”
That just shows how much he genuinely wants to help those with EDS. Professor Grahame you are a wonderful gentleman and thank you so much for your research into EDS and fighting with us!
Hope you’re all having a pain free day.
Love & hugs, Charlie x