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.
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,
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