So it’s EDS Awerness month, and we need to talk about the medical neglect that comes along with having this condition.
Starting with how obscenely hard it is to be taken seriously and diagnosed.
you can’t even get a referral to the correct medical professional as they have started declining EDS patients, leaving us to suffer alone! With are bodies feeling like a nucular war is taking place inside of us.
The care for this condition? there is non, it’s gaslighting from the start.
The first time i started having real issues with my health, i was told “its hysterical conversion syndrome” I left that appointment as felt their was no point anymore, that dr of whom my whole livelihood was riding on, one singular person who with one sentace, decimated my whole belief in what my body told me. I was written off and left to suffer for YEARS before anyone took notice of what was happening (i now 6 years later have amazing drs) you will find specialists to deal with the comorbidities like gastroparesis and other things who provide exemplary care. but the underlying cause, the EDS, a dr who helps deal with that is rarer than a jabbawocki.
I was told “stop attention seeking, seek psychological intervention there’s nothing wrong” when in actuall fact, my joints were dislocating daily, my autonomic nervous system wasn’t functioning properly, my digestive system was partially paralysed and a whole lot more. Once you get that mark of “it’s in your head” next to your name in a medical file, drs don’t think your worth treating! Iv herd A&E staff laugh at me stating i’m a “mental health case” and i’m “most likely faking” seratonin syndrome.
The gastro doctor i saw before my current GI (who is amazing) said to me “we will stick a pin in the physiological therapy, that’s what you need” my now GI did every test possible and found all sorts of physical issues that talking therapy won’t fix. even reassuring me it wasn’t in my head and was very much a physical issue, why did it take 3 years to get to that point?
I ask you this, if you dislocate a shoulder, you go to A&E don’t you? you get pain management, treatment and follow up care. So why when you have a dissorder that causes dislocation to happen every day multiple times a day you have to FIGHT to get help?
FIGHT for pain control?
FIGHT to be herd?
FIGHT for your own medical care?
It’s catagoricaly not ok. It would be a news worth story if a young person went to A&E with a dislocated hip, and was refused treatment, told it was “psychological” in nature when there is evident diformity of the hip.
So why is that principle applied to the management of a complex, agonising, long term chronic illness that effects everything from holding a knife and fork to getting up if a toilet?
Why do the people who suffer the most recive the least care? It is the most soul destroying moment of your life, when you’ve waited almost a year or longer to see a specialist, who gaslight you, writes you off, and doesn’t offer any help or solution. and very clearly does not care about your well-being at all. Unfortunately, I’ve experienced that from most medical professionals i saw at the start when my symptoms enters the group chat, like the hulk in a bad mood. I can count on one hand, the amount of Doctors who listened.
EDS feels like your joints and being wrenched from there sockets 24hrs a day, it’s a 7/10 staring point on the pain scale.
why do people who have it have to manage alone and organise their own care when under different specialist?
Because let’s face it, it has systemic involvement and has a drastic effect on each and every one of the body’s systems. Collegen is in EVERY part of your body. If their isn’t enough things won’t work.
Would you expect a nuclear power plant to function correctly with no plotonium or uranium? you wouldn’t, is the same principle. If your missing a key ingredient for something to function it’s not gonna work properly at all.
The General Medical Councils code of conduct is
“It says that as a good doctor you will: make the care of your patient your first concern. be competent and keep your professional knowledge and skills up to date. take prompt action if you think patient safety is being compromised” That evidently goes out the window with chronic illness.
it appears many consultants, and Doctors have lost sight of that, because the main priority is keeping costs down, referring everyone to talking therapy and using psychological terms to cover up the fact they don’t want to treat patients.Or apply a plaster to the gaping hole that is chronic illness, And as a result, thousands and thousands of people are left to suffer with an illness, which destroys you.
To put into perspective, I used to be able to run 2.4 K in 10 minutes, I used to deadlift nearly 100 kg and be able to eat an entire pizza, because of EDS. I now can’t sit up in bed without help, I eat through a tube, and can’t stand without mobility aids and body braces. It decimates you from the inside out and spreads like wildfire through your body, attacking your system as it goes. You’re told it doesn’t get worse, you’re told your symptoms won’t deteriorate when an actual fact they do, and you develop more comorbidities and more illnesses along the way. I was lulled into a false sense of security….
No one should have to fight for basic care, no one should feel their sthomach knotting up before the next Drs appointment terrified of how the dr is going to react. We are people to, regardless of are hidden illness, We deserve as much care as a able bodied healthy person.
The Chronic illness community is the minority you can become part of any point in your life.
Treat us how you would like to be treat if you were unwell and suffering to, we are worth no less. We deserve the same!