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481d
I’m so angry. I’ve seen stuff about people faking diseases, including EDS and POTS, and it makes me so so mad. I have those conditions and they suck. They really suck and I hate them and I wish I didn’t have them. I wish I didn’t need crutches and braces and a heart monitor, I wish I didn’t need to see so many doctors and specialists. I wish I didn’t need more surgeries. But I do. And to see people glorifying and romanticizing these painful and limiting conditions makes me really mad. It also makes people less likely to believe chronically I’ll people. When I was younger and before getting diagnosed, doctors didn’t believe things were as bad as they are. Now I have all the scans and tests and surgical reports that prove what’s wrong with me, so doctors believe me, but it’s a sensitive topic still. I shouldn’t have to prove my illness, prove I need my crutches just because some stupid internet people get a kick out of faking my diseases.
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Ehlers-Danlos Syndrome (EDS)
Postural Orthostatic Tachycardia Syndrome (POTS)
Chronic Generalized pain
Lethargy
Myalgic Encephalomyelitis
Abdominal Distention
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472d
It’s outrageous that people would want this. I’m in the middle of a pain flare and it sucks. Can’t get out of bed. It’s not fun or quirky, it’s hell
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475d
dude it is like infuriating. i know someone at my school who exaggerates and lies about her symptoms and conditions to get out of things or so she gets more attention
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476d
How do you know they're faking?
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477d
Yeah, it really sucks and I definitely feel you. Like it’s so annoying dealing with people not believing me or being told that I don’t deserve accommodations because some people will abuse them. I keep my 504 doctors note in my backpack incase a teacher doesn’t believe me. I don’t like fakeclaiming, but my hatred of when people pretend to have EDS and dysautonomia and stuff isn’t directed at specific people, but rather the potential people that do it.
@Wednesday_7 yes exactly
478d
It is extremely frustrating, bc it affects those that have it. I carry my genetics letter of diagnosis simply bc so many doctors do not believe I can have EDS, are you sure you're not confused? You don't have that maybe just hypermobility. I have POTS but my old cardiologist states diagnoses aren't needed bc it's common. It's hard out here in general without the added difficulty. It's also just insulting, I've had 3 major joint surgeries in a year and a half and I'm not nearly done so I can understand your frustrations.
@murdermittens I had a hard time with docs at first, but now that I have so many records saying I have Eds and pots from other docs they believe me. I had 5 big joint surgeries in 2 years, and they saw that my tissues were all messed up so now they can’t say I don’t have it
@Student_girl but I'm really glad you don't have to argue your illness it really only makes it harder in the end I'm glad some doctors believe you and want to help. ❤️
@Student_girl I understand, I still even with EDS in red in all my charts have multiple problems with doctors so I still carry my diagnosis letter. I have so many congenial birth defects as well as a multitude of soft tissue injuries it's hard to even argue my diagnoses. I've had one back survey 2 hip surgeries( POA) one knee osteotomy and mfpl reconstruction I need, one knee osteotomy 2 ankle surgeries a complete hysterectomy and mesh , a second back operation and likely a rib surgery
Yikes… have you considered that the accusers are wrong? Just bc someone shares their experience online doesn’t mean they’re faking or glorifying the condition
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@Jadesparks9 some probably are. There are definetly people who post and arent faking, that’s probably the majority. But there probably are some who are pretending. It not like specific people I’m mad at, just the idea that there are some people doing this at all.
@Student_girl Consider what faking would require. Yeah there are probably some but it’s near impossible to fake certain things. The harm of people accusing people of faking is far greater. I personally know people who have been physically harmed by people from certain sites.
how the fuck do you even fake eds, it’s pretty easy to show you have it or some form of hypermobilty
@w1ll people claim they have it and do cheap tricks that aren’t actually hyper mobility. A lot of people aren’t well informed so they just believe them even though if you know about the conditions, you can see it’s fake.
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I’ve seen it too, it’s so frustrating. One of them that I’ve seen on tiktok just joined a local EDS fb group I’m in, saying they’re moving to my area. Makes me feel like that group isn’t a safe space anymore.
@SlothFan26 I want to find people like me to relate because I feel so alone in my disability, but I don’t want to get duped and be talking to a faker. It sucks and makes me feel even more alone
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☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision
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