The feedback I have received from my EDS Facts has been great. It is so good that people are finding them helpful! May is EDS Awareness month and I have been thinking for a while what kind of awareness content I can create so that I can do my bit. I’ve just uploaded a new video to my YouTube channel and it is a video version of the EDS Facts I have created. I really hope that this can help spread awareness and get people to understand the invisible battles that so many of us go through.
Please like, share the video, comment your feedback and subscribe to my channel to help me on my mission to raise awareness of Ehlers-Danlos Syndrome. Together we can raise awareness and hope for a better future, and maybe even a cure, for those living with EDS.
So this video was really difficult for me to upload as I struggle massively with letting people see me like this but this is the ugly truth of what a “bad day” can be like for me.
How can I expect others to understand if they only ever see the smiley happy Charlie, when quite often this is my reality? We also need to raise awareness of invisible illnesses to stop the judgement that is still surrounds disabilities. No one should have to explain and prove how sick they are.
Have you got any stories about times when you have been judged? Please pop them in the comments below, I’d love to have a read!
Dear person who left this note in my car,
Thanks for judging me when you don’t know me. What gives you the right to decide that I am not worthy of a disabled space?
I may look like a “normal” young woman but that’s because I try my best to fit into society and not let people know that I’m in pain. I’m not pretending to be sick, I’m pretending to be well.
I have numerous invisible health conditions. I have a rare genetic connective tissue disorder called Ehlers-Danlos Syndrome. This is a multi systematic condition and affects everything from my brain, my joints, my heart, my bones, gastrointestinal system, in fact there is very little that it doesn’t affect! I also have other invisible illnesses such as gastroparesis, dysautonomia, raynauds and many more. I don’t shout about these as I’d like to live my life as best as I can. These conditions vary massively from day to day. I have carers, district nurses, lots of hospital consultants and appointments. I shouldn’t even be explaining myself to someone who is so judgemental but I feel it is necessary to educate you and your small mind. Next time you see someone and think they don’t deserve a disabled spot then why not ask what’s wrong? I’d prefer to explain how my conditions affect me to your face rather than be left an anonymous note. I’ve had two surgeries in the past 8 weeks and numerous infections including a spinal one I am currently fighting so I think I’m allowed to park a few steps closer to the door thanks.
Please think before you judge someone. You have no idea what’s going on in people’s lives!
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.
As you may know I am currently waiting to have sacral nerve stimulation surgery so I thought I would write a post explaining a bit more about the process and how it hopefully will help me!
Due to my Ehlers-Danlos Syndrome I have numerous problems with my bladder and bowel. After previously having tests it was discovered that this could partly be due to a communication problem between my bladder/bowel and my brain. Sacral Neuromodulation Therapy can help to restore normal bladder or bowel function and where successful, it can be a life-changing treatment.
Our brain controls our bodies muscles and movements by sending electrical messages, which are carried by nerves. There are major routes, one of which runs from the brain, along the spinal cord and through the lower back called the sacral area, and they have smaller pathways running off them. Sacral Neuromodulation helps to correct inappropriate, unwanted or incorrect messages.
The surgery itself is performed in two phases, the evaluation phase and the implant phase.
During the evaluation phase I will have surgery to insert a thin temporary wire near the sacral nerve in my lower back which control the bladder/bowel. The wire will then be connected to a little device which I will have to wear on a belt and this delivers the stimulation to the nerves. This test phase will last a couple of weeks and then I will have an assessment to see if I will benefit from the permanent implant.
If the test phase is successful I will then have another surgery to have the device implanted just beneath my skin in the upper buttock area. A lead is also implanted in the lower back and then connected from the device. The battery usually lasts about 5 years.
If the test phase is unsuccessful then the temporary wire will be removed.
On Wednesday I have another pre-op, this time to see an anaesthetist, to discuss the surgery further as I’m a complicated zebra thanks to EDS! I will try and keep you all updated with the next steps etc.
I hope you have had a lovely bank holiday weekend with as little pain as possible!
Love & hugs,