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





EDS Fact: Number 71


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.

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



Hey everyone,
So I know I haven’t really posted for a little while, I’ve had quite a lot going on lately. I’ve been back in the hospital a few times again for gastro issues and also gynaecological problems. They finally seem to have gotten to the bottom of the pelvic pain that I’ve had for the past few months and I’ve had treatment for pelvic infections, kidney infections and urinary tract infections. I am still struggling at the moment but I am now on another course of antibiotics for 4 weeks.
Last week I saw my gastro doctor and he reviewed my previous MRI results. He explained that it showed I had a rectocele prolapse which I was aware of but it is a shame that after my surgery it hasn’t improved like some had hoped. We discussed an NG tube for feeding/fluids as I am struggling with my stomach at the moment as I feel as though I am always full and am getting very bad nausea and reflux, this is due to my delayed gastric empyting. His concern is that if I have an NG tube and my stomach isn’t emptying then it may not be beneficial, however he also said we won’t know until we try. He has put my on a 4 week course of antibiotics which are used for treatment of delayed gastric emptying and I am going to be seeing him again in 4 weeks.
My joints are causing me some pain at the moment. I have been trying to do some exercises to strengthen my legs and this seems to be helping me massively but my shoulders, hips etc are still very unstable. Last time I saw my physio he asked me what I’d done as my shoulder wasn’t in place and he seemed shocked when I said I’d just rolled over in bed but for someone with EDS this is our reality. A simple knock can cause injury and dislocations/subluxations. I had to have my shoulder taped up to try and keep it in place and it really helped but unfortunately I had a reaction to the tape so had to take it off and now the instability seems to be coming back.
Next week I have an appointment with my cardiologist and an appointment for a flexible cystoscopy which is when a camera is inserted to my bladder. My urologist wants to check that everything looks okay in my bladder and that I don’t have a blockage or narrowing which could be causing a lot of my problems. If everything looks okay and my previous MRI results are okay then my urologist wants me to have a sacral nerve implant fitted. I am very nervous about this after my last surgery and there are lots of things that need to be done before I go for the surgery.
I have managed to stay out of the hospital now for 2 whole weeks which may not sound like long but for me it’s amazing as I’ve been in a lot this year. I am so grateful for the amazing people I have in my life who help me on my journey. Here are a few photo’s!


Reaction the cannula and/or meds.


Reaction the antibiotics.

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Thank you for reading,
Love & hugs, Charlie x