Hypermobility and other 'invisible' disabilities/illnesses

[Saint Jade IV]

I was diagnosed as a teenager with hypermobility (after a battery of tests, and a recommendation to a psychologist, because it was clearly all in my head). For those who don't know, it's essentially what people refer to as "double jointedness".

There are a range of other symptoms such as fatiguing easily, joint pain, and resistance to local anaesthetics. I also have coordination issues, and an increased risk of joint problems like arthritis.

However, looking at me, you wouldn't have any clue. It's exceptionally difficult to explain to people why I fatigue easily from fairly minor exercise or even basic chores like hanging washing on the line, or writing for a long period of time.

I think its actually a bit of a hidden discrimination. Nothing looks like it's wrong, so people assume that I'm lying, or exaggerating. People often find it difficult to understand why I don't play sport, and why I get very fatigued very easily.

I get frustrated with the way that society acts as though visible disabilities or illnesses are the only 'real' kind. I think that there needs to be significantly increased education to help people to understand the diversity and range of needs that people have, and that someone who doesn't look disabled or special needs can still be in those categories.

Has anyone else out there got similar situations - hidden or invisible disabilities or problems, and does anyone have experience of discrimination or dismissal of their needs as a result of their illness/disability being "invisible"? Do you think that societal attitudes to capacity or illness needs to be rethought?

[L Ron Cupboard]

I am against the unnecessary creation of syndromes and illnesses. I have always had flexible joints and have not noticed any of the other symptoms you describe.

[Dazchan]

I have a very mild form of Tourette's Syndrome, and feel the same way when people give me strange looks for my vocal tic.

I also injured my wrist as a teenager, which has left it significantly weaker than my other arm. This prevents me from doing any heavy lifting (I had to get my kids to move all my stuff when I changed classrooms last year), and deal with a lot of grief from people who assume I don't do my own gruntwork because of laziness...

[The Whispers]

Agoraphobia is incredibly annoying and difficult to get to fuck off. If you're having any kind of symptoms of it at all, reader of this post, go to a counsellor of some kind and try to get it fixed early on.

[Bottle]

I am against the unnecessary creation of syndromes and illnesses. I have always had flexible joints and have not noticed any of the other symptoms you describe.

Sounds like you don't have the disorder he describes, then.

[Disserbia]

I have hyperthyroidism does that make me special too? For crissake when does it stop?

[Bottle]

I get frustrated with the way that society acts as though visible disabilities or illnesses are the only 'real' kind. I think that there needs to be significantly increased education to help people to understand the diversity and range of needs that people have, and that someone who doesn't look disabled or special needs can still be in those categories.

Has anyone else out there got similar situations - hidden or invisible disabilities or problems, and does anyone have experience of discrimination or dismissal of their needs as a result of their illness/disability being "invisible"? Do you think that societal attitudes to capacity or illness needs to be rethought?

In my opinion, there's no need to educate people further about disabilities (although learning in general is fun and I have nothing against it), nor is there any need for greater social consciousness about disability.

All that is required is basic manners.

In the USA, the main thing we need to ditch is this notion that health is a moral imperative, and that other people somehow owe it to you to be healthy. Americans are especially bitchy about this because we are currently trying to join the modern world when it comes to health care, and everyone is so very testy about how THEIR precious dollars might be spent on somebody else's medical services. A lot of Americans consider this a free pass to become bossy and nosy and demand that anybody who requests special services provide a 10-page essay justifying their existence.

This is not about lack of education or awareness of disabilities, it's about far too many people reaching adulthood without shedding the bratty behavior of spoiled children.

[Disserbia]

I get frustrated with the way that society acts as though visible disabilities or illnesses are the only 'real' kind. I think that there needs to be significantly increased education to help people to understand the diversity and range of needs that people have, and that someone who doesn't look disabled or special needs can still be in those categories.

Has anyone else out there got similar situations - hidden or invisible disabilities or problems, and does anyone have experience of discrimination or dismissal of their needs as a result of their illness/disability being "invisible"? Do you think that societal attitudes to capacity or illness needs to be rethought?

In my opinion, there's no need to educate people further about disabilities (although learning in general is fun and I have nothing against it), nor is there any need for greater social consciousness about disability.

All that is required is basic manners.

In the USA, the main thing we need to ditch is this notion that health is a moral imperative, and that other people somehow owe it to you to be healthy. Americans are especially bitchy about this because we are currently trying to join the modern world when it comes to health care, and everyone is so very testy about how THEIR precious dollars might be spent on somebody else's medical services. A lot of Americans consider this a free pass to become bossy and nosy and demand that anybody who requests special services provide a 10-page essay justifying their existence.

This is not about lack of education or awareness of disabilities, it's about far too many people reaching adulthood without shedding the bratty behavior of spoiled children.

I think he/she/they are australian. Also in the US over diagnosing is a big problem I don't believe the social shit you are talking about and over diagnosing are mutually exclusive. Oh and also that's a fuckton of assumptions I dare you to back up, are you a psychologist?

[Bottle]

In my opinion, there's no need to educate people further about disabilities (although learning in general is fun and I have nothing against it), nor is there any need for greater social consciousness about disability.

All that is required is basic manners.

In the USA, the main thing we need to ditch is this notion that health is a moral imperative, and that other people somehow owe it to you to be healthy. Americans are especially bitchy about this because we are currently trying to join the modern world when it comes to health care, and everyone is so very testy about how THEIR precious dollars might be spent on somebody else's medical services. A lot of Americans consider this a free pass to become bossy and nosy and demand that anybody who requests special services provide a 10-page essay justifying their existence.

This is not about lack of education or awareness of disabilities, it's about far too many people reaching adulthood without shedding the bratty behavior of spoiled children.

I think he/she/they are australian.

Yes, that would be why I included my country of origin...because I know many people are not from the USA, and therefore my statements about my country may not apply to them.

Also in the US over diagnosing is a big problem

For some disorders, yes. For others, the opposite. For a great many, we're average.

I don't believe the social shit you are talking about and over diagnosing are mutually exclusive.

Did I say they were?

Oh and also that's a fuckton of assumptions I dare you to back up, are you a psychologist?

Neuroscientist, but yes I also hold a degree in psychology. Why is that relevant? Would a "fuckton of assumptions" somehow be okay with you if they came from a person with a lot of degrees? If so, then GOOD NEWS! I have four.

But really, that isn't a good attitude. You should stick to addressing arguments rather than wasting time on appeals to authority and such.

[Disserbia]

I think he/she/they are australian.

Yes, that would be why I included my country of origin...because I know many people are not from the USA, and therefore my statements about my country may not apply to them.

Also in the US over diagnosing is a big problem

For some disorders, yes. For others, the opposite. For a great many, we're average.

I don't believe the social shit you are talking about and over diagnosing are mutually exclusive.

Did I say they were?

Oh and also that's a fuckton of assumptions I dare you to back up, are you a psychologist?

Neuroscientist, but yes I also hold a degree in psychology. Why is that relevant? Would a "fuckton of assumptions" somehow be okay with you if they came from a person with a lot of degrees? If so, then GOOD NEWS! I have four.

But really, that isn't a good attitude. You should stick to addressing arguments rather than wasting time on appeals to authority and such.

I never said that you said that over diagnosing and what you claim to be the attitude of a lot of Americans was mutually exclusive. Did I? No. I am merely pointing out that you only addressed one side of the issue.

A fuckton of assumptions, well for one the assumption that Americans think about this the wa you claim they do because the reached adulthood without "shedding the bratty behavior of spoiled children." That really isn't a good attitude to have, considering in a debate asking for credible sources to claims is completely valid.

[The Serbian Empire]

I feel that way myself to an extent. It's not much fun to have so much anxiety that one literally can waste away. At least my anxiety and panic attacks are manageable now thanks to medication, but until I was twenty I can consider much of that time a living hell with an unpredictable problem with panic attacks. Sure there were some situations I knew would give me one like the fire drills (I don't like to be distracted from my studies nor do I like the noise or lights of the alarms), but for the most part it was more like living with a fuse you couldn't see.

[Dumb Ideologies]

I'm dyspraxic and I have an anxiety disorder.

I'm not an alcoholic though.

[Olivaero]

Mm my hypermobility apparently caused my kneecap to slip out of it's socket, Or rather my doctor refereed to it as my double jointedness I was in quite a bit of pain at the time, so I wasn't paying too much attention. He was cheerfully explaining to me that I could of had a great career as a gymnast if I'd have chosen to, before realizing I was Dyspraxic and therefor pretty much disqualified from doing balance related things. Dyspraxia bugs me far much more that my double jointedness though, sure my knee still hurts sometimes but I'd much rather just be able to catch a ball as easy as other people do, or look at the screen and type for that matter

[Hetalian Indie Rio de Janeiro]

In Brazil I need to explain people 'what the fuck is Asperger' and when I say the word 'autism' they look very aggressive as if I made a sexist or racist joke about someone of their family!

[Rubiconic Crossings V2 rev 1f]

Great. I'm double jointed in both my thumbs. Now I get to look forward to bouts of crippling arthritis. Fucking marvelous.

[The Whispers]

Great. I'm double jointed in both my thumbs. Now I get to look forward to bouts of crippling arthritis. Fucking marvelous.

Yeah but you should win some thumb wars for contracts or similar while possible.

[Olivaero]

Great. I'm double jointed in both my thumbs. Now I get to look forward to bouts of crippling arthritis. Fucking marvelous.

Yeah but you should win some thumb wars for contracts or similar while possible.

Ah thumb wars... the foolish Single jointed feel they can best us... alas they are inferior

[Samozaryadnyastan]

I have hyperthyroidism does that make me special too? For crissake when does it stop?

"I fatigue easily and can't play sport"
"shut up"

Well, aren't you just full of it today, miss.

[Saint Jade IV]

I am against the unnecessary creation of syndromes and illnesses. I have always had flexible joints and have not noticed any of the other symptoms you describe.

Flexible joints are a very small part of hypermobility, and not everyone with more flexible joints has hypermobility.

You kind of proved the point I made in the OP.

I have a very mild form of Tourette's Syndrome, and feel the same way when people give me strange looks for my vocal tic.

I also injured my wrist as a teenager, which has left it significantly weaker than my other arm. This prevents me from doing any heavy lifting (I had to get my kids to move all my stuff when I changed classrooms last year), and deal with a lot of grief from people who assume I don't do my own gruntwork because of laziness...

That's exactly what I deal with. I have trouble carrying slightly heavy things (think a 2 litre carton of milk) without gaining joint pain or muscle stiffness and tiredness. People laugh at me, or very condescendingly make suggestions about me doing strength training or exercising more to increase my strength.

I get frustrated with the way that society acts as though visible disabilities or illnesses are the only 'real' kind. I think that there needs to be significantly increased education to help people to understand the diversity and range of needs that people have, and that someone who doesn't look disabled or special needs can still be in those categories.

Has anyone else out there got similar situations - hidden or invisible disabilities or problems, and does anyone have experience of discrimination or dismissal of their needs as a result of their illness/disability being "invisible"? Do you think that societal attitudes to capacity or illness needs to be rethought?

In my opinion, there's no need to educate people further about disabilities (although learning in general is fun and I have nothing against it), nor is there any need for greater social consciousness about disability.

All that is required is basic manners.

In the USA, the main thing we need to ditch is this notion that health is a moral imperative, and that other people somehow owe it to you to be healthy. Americans are especially bitchy about this because we are currently trying to join the modern world when it comes to health care, and everyone is so very testy about how THEIR precious dollars might be spent on somebody else's medical services. A lot of Americans consider this a free pass to become bossy and nosy and demand that anybody who requests special services provide a 10-page essay justifying their existence.

This is not about lack of education or awareness of disabilities, it's about far too many people reaching adulthood without shedding the bratty behavior of spoiled children.

I do think that basic manners is important. And while I am Australian, much of what you've said could fit very easily with the typical Australian mindset. Australians in general believe that being healthy and active is the be all and end all of existence. So for someone who can't be physically active as much as other people, I experience a lot of well-intentioned rudeness regarding how I'm clearly unfit, and clearly need to exercise more.

The only thing I think people need to be more aware about when it comes to disabilities is that they are not always evident or obvious. I have a lot of problems because I get accused of laziness, as Dazchan said, if I don't help out with say, moving desks or furniture in a classroom, but if I do, I end up in very bad pain and fatigued for a few days, which affects my work and life.

[Saint Jade IV]

Great. I'm double jointed in both my thumbs. Now I get to look forward to bouts of crippling arthritis. Fucking marvelous.

I'd recommend getting tested for hypermobility before making assumptions based off a random internet forum post .

[Pandeeria]

Did you at least try to explain to them hyper mobility and that you have it?

Also education on it? No, most people I know are accepting and the education will probably not help most to all it ignorant people. All it will do is make them bored and not pay attention.

[Saint Jade IV]

Did you at least try to explain to them hyper mobility and that you have it?

No. I just assumed everyone was a fucking mind-reader.

Also education on it? No, most people I know are accepting and the education will probably not help most to all it ignorant people. All it will do is make them bored and not pay attention.

Education and school are not the same thing. Awareness campaigns, advertisements, community events where disability is represented in a more diverse way than currently observable are all forms of education. Making employers aware that some employees are not "making excuses" for being lazy, just because they don't fit the disabled stereotype.

I also think disability support groups need to move away from just advocating for clearly disabled or high-needs people. I get why they do it, but it really just perpetuates the stereotype that if you don't look or sound disabled, then you're lying.

I don't take medication, I don't need any physical aids to move, and I honestly do not look or sound disabled. I can do most things without a problem. No one notices my problems, except those close to me who know how easily I tire, and how sore I get, as well as the pain I experience in my joints from relatively light exercise.

[Tagmatium]

Great. I'm double jointed in both my thumbs. Now I get to look forward to bouts of crippling arthritis. Fucking marvelous.

Have them amputated.

No thumbs, no problem.

[United Furry Alliance]

I'm also double jointed. its sorta nice. i think not much comes of it.

[L Ron Cupboard]

I am against the unnecessary creation of syndromes and illnesses. I have always had flexible joints and have not noticed any of the other symptoms you describe.

Flexible joints are a very small part of hypermobility, and not everyone with more flexible joints has hypermobility.

You kind of proved the point I made in the OP.

My post was rubbish and really didn't get across what I was trying to say. I was not trying to cast doubt on your illness. I looked up hypermobility on the NHS website and I have some things like knee pain, a shoulder with a tendency to dislocate, heartburn, and a few of the other symptoms but I must say I have never thought of it as a problem let alone a disability.

When I said about the creation of syndromes and illnesses, I meant ones created for marketting - for example Listerine was originally used to clean floors but their marketing people came up with the idea of bad breath so they could re-brand it as something new, mouthwash.