[yellowted]

please can something be done to the dissociative disorders site to erradicate the hostility to those with lesser known dissociative disorders, every time i post on the site i am met with hostility and people trivialising dissociative motor disorder, saying it is not a dissociative condition, it is or it would not be called Dissociative motor disorder it would be called something else. ok Americans may call it something else, but in the UK it is still a dissociative condition, and as there is no where specific on this site for conversion disorder people to post it would be nice to be able to post here without being dismissed by DID people. i understand you can't be responsible for what people post, but the explination of the site being for those with ....dissociative disorders (such as DID ....) is not helpful to those with other dissociative conditions as DIDs have manopolised the site solely for themselves shunning anyone who even dare mention any other dissociative condition.

[amandalouise]

Originally Posted by yellowted

please can something be done to the dissociative disorders site to erradicate the hostility to those with lesser known dissociative disorders, every time i post on the site i am met with hostility and people trivialising dissociative motor disorder, saying it is not a dissociative condition, it is or it would not be called Dissociative motor disorder it would be called something else. ok Americans may call it something else, but in the UK it is still a dissociative condition, and as there is no where specific on this site for conversion disorder people to post it would be nice to be able to post here without being dismissed by DID people. i understand you can't be responsible for what people post, but the explination of the site being for those with ....dissociative disorders (such as DID ....) is not helpful to those with other dissociative conditions as DIDs have manopolised the site solely for themselves shunning anyone who even dare mention any other dissociative condition.

it isnt that we are trivializing not aqcknowleding and being hostile. psych central is made up of people all around the world. that means that everyone has to go according to what is mental disorders in their own locations. no one in the dissociative disorders said your dissociative motor disorder wasnt a disorder and that we were not acknowleding it. all my post said was letting you know that here ....in america...we dont call it dissociative motor disorder. ..here in america we call it conversion disorder and here in america it isnt listed as a dissociative disorder in the dsm.

my reason for posting that wasnt to cause you problems. it was because in your post you stated dissociative motor disorder never gets mentioned....it does it just is called a different thing in different locations.

[sabby]

yellowted,

I'm sorry you are feeling like no one is hearing you about your disorder. Truly, no one should be questioning your diagnosis. You have every right to post in the DD forum without fear of being questioned just like everyone else.

I think, from what I can see, the problem lies in how your disorder is classified between the US and the UK. Again though, no one should be questioning your dx, it seems in this case, they are just stating how the US classifies it compared to the UK. That doesn't make either one wrong, just different.

I can see you are sensitive about this, and I don't blame you at all, but I truly don't see where there is any hostility towards you, even though it may feel like there is to you. Again, I am sorry you are feeling that way.


sabby

[-jimi-]

I don't want to be rude but a lot of the sections here are monopolized. There are several sections where groups go where you have to be a special way to fit in.

Also if someone in this kind of group has an issue that does not belong to the topic they still post it in the section instead of posting in the section for the kind of issue. Which means instead of mixing with each other over the whole site, people lock themselves into a section, post all their stuff in there for social reasons.

I tend to want to post in the nonspecific sections because there I know someone will not question my presence...

[yellowted]

[all my post said was letting you know that here ....in america...we dont call it dissociative motor disorder. ..here in america we call it conversion disorder and here in america it isnt listed as a dissociative disorder in the dsm.

may be so but that is the same response i always get on this site, never any help or suggestions or anything, just that it is not called that in america, well america is not the only place on this plannet, does it never occur to look at how long someone has been a member and think that they probably already know the obvious and also the person who asked the question may not have been from america in the first place so may actually have came from somewhere which does classify other specific dissociative disorders and may actually be interested nin knowing about those too!

my reason for posting that wasnt to cause you problems.

it probably wasn't, but it did, i have been fighting this for four years totally on my own because eventhough it is classified over here it is still not recognised so is not given the help it needs, so people with it are left seing and knowing the help they need but without the means of getting it as treatments here are dx specific and as it is such a rare condition which most doctors do not understand or even know about there is very little help/treatment available e.g dmd people benefit from the same therapies as those who had a stroke, but are not allowed in the stroke units, I can't stand let alone walk, my mate with arthritis can still walk a few steps, he got an electric wheelchair and his house adapted and paid for in three months from dx, i am 4 years from dx and still have not had my house adapted in fact i have to pay over 10K to get it done and 'don't fit the criteria' for an electric wheelchair so had to buy my own scooter or be housebound.
so you can see why i bit when once again someone stated the american way, i am just fed up hearing what you said about it because i get similar every day here where it is classified. it certainly is not a hyperchondria, it is a proper disorder and i just want people to see that.

[amandalouise]

Originally Posted by yellowted

[all my post said was letting you know that here ....in america...we dont call it dissociative motor disorder. ..here in america we call it conversion disorder and here in america it isnt listed as a dissociative disorder in the dsm.

may be so but that is the same response i always get on this site, never any help or suggestions or anything, just that it is not called that in america, well america is not the only place on this plannet, does it never occur to look at how long someone has been a member and think that they probably already know the obvious and also the person who asked the question may not have been from america in the first place so may actually have came from somewhere which does classify other specific dissociative disorders and may actually be interested nin knowing about those too!

my reason for posting that wasnt to cause you problems.

it probably wasn't, but it did, i have been fighting this for four years totally on my own because eventhough it is classified over here it is still not recognised so is not given the help it needs, so people with it are left seing and knowing the help they need but without the means of getting it as treatments here are dx specific and as it is such a rare condition which most doctors do not understand or even know about there is very little help/treatment available e.g dmd people benefit from the same therapies as those who had a stroke, but are not allowed in the stroke units, I can't stand let alone walk, my mate with arthritis can still walk a few steps, he got an electric wheelchair and his house adapted and paid for in three months from dx, i am 4 years from dx and still have not had my house adapted in fact i have to pay over 10K to get it done and 'don't fit the criteria' for an electric wheelchair so had to buy my own scooter or be housebound.
so you can see why i bit when once again someone stated the american way, i am just fed up hearing what you said about it because i get similar every day here where it is classified. it certainly is not a hyperchondria, it is a proper disorder and i just want people to see that.

I understand where you are coming from and I did not mean that it was hyperchondria. see here hyperchondria has a situation where a persons mental issues get converted into physical motor problems. thats why it is grouped with the group title "somatoform disorders" here. it doesnt mean every disorder in the somatoform disorders are fake or made up. somotoform is a term that means physical sensations, physical feelings, physical momvement problems. my Multiple Sclerosis is a somatoform disorder in some USA states because it has a mental component that sometimes can convert to physical sensations, physical feelings...it being grouped in the somatic type disorders like hypochondria doesnt make it less real less important, its just grouped that way because of some of the symptoms.

I know part of the problem is that the DSM categorizes things one way and the ICD that other countries uses is different.

one reason I tell others what their disorder is called here in america is so that they have another term to use when looking for help..

example now that you know that other locations call your mental disorder "conversion disorder" you can do a psych central search to find others like you by searching under both your term dissociative motor disorder and other countries term conversion disorder.

instead of having only one way (dissociative motor disorder) to find the help you are looking for you now have two ways. (dissociative motor disorder ...and....conversion disorder)

[-jimi-]

I think we need to be generous and let people in. Even if the condition is according to the WHO and not the American manual. And also for that matter when a disorder is not complete. A section shouldn't require an official diagnosis, I know sites which are run like that and they tend to be unpleasant. So undiagnosed, diagnosed according to different manual, and partial disorder should all be welcomed (IMHO of course).

We don't gain anything about being stringent here. It's not like we cost people money or apply for disability with what we have. The only thing we ask is to be able to tell our stories, listen to other peoples', receive and give support.

For me it makes sense that the condition described belongs in dissociation. Can we be generous here? It's hard enough as it is to have something quite rare. I have symptoms that don't seem to fit anywhere on the forum so I tend not to mention them because I don't want to hear how I don't live up to a diagnosis. My issues are not as severe as Y's, but it would still be nice to be.... welcomed.

I mean, according to ICD a lot of bipolars are not bipolars how we see it in Europe, but I would never barge into the BP section to tell them that. It would be rude.

I know I don't come across as a super supportive person so I might be a hypocrite here, but I wish "we could all get along"...

[yellowted]

Originally Posted by sabby

yellowted,

I'm sorry you are feeling like no one is hearing you about your disorder. Truly, no one should be questioning your diagnosis. You have every right to post in the DD forum without fear of being questioned just like everyone else.

I think, from what I can see, the problem lies in how your disorder is classified between the US and the UK. Again though, no one should be questioning your dx, it seems in this case, they are just stating how the US classifies it compared to the UK. That doesn't make either one wrong, just different.

I can see you are sensitive about this, and I don't blame you at all, but I truly don't see where there is any hostility towards you, even though it may feel like there is to you. Again, I am sorry you are feeling that way.


sabby

it just feels that no matter where in the world i mention my condition it is never understood or i am not believed either that it is a mental health condition or that i can not get physio, the house adapted or whatever the other person percieves someone with the physical problems that come with it should be getting.i always have to justify why i can't get it. seing others with the same or even less needs getting more support/treatment/help on a daily basis is really getting to me. i am not jealous, it is great the support they get, i am disappointed that i/my dx is deemed not worthy of help or understanding.
i know in most places you have to pay for treatment, but here you don't which actually is great for recognised 'common' dx's but for those like mine it makes it impossible to get any.top that with having the dx questionned every time is very waring.

[-jimi-]

Can understand the frustration. I ended up on the good since a few times and that doesn't feel right either. Like a friend had to fight 2 years to get on disability and I got it at once basically no questions asked. Even if I think we have about an equal amount of problems daily. She just had the wrong DX and I had the right one for my system.

Stupid red tape. We're people, not a generalized grey mass.

[yellowted]

Originally Posted by jimi...

Can understand the frustration. I ended up on the good since a few times and that doesn't feel right either. Like a friend had to fight 2 years to get on disability and I got it at once basically no questions asked. Even if I think we have about an equal amount of problems daily. She just had the wrong DX and I had the right one for my system.

Stupid red tape. We're people, not a generalized grey mass.

soo true x there is a saying going around here which the authorities hate ...I have fallen between the cracks... they are just starting to realise that their systems have cracks in them though they rarely acknowledge the fact!

(((hugs))) don't feel bad about getting straight onto disability, that is how it should be! just a shame the system is not the same for all dx's then everyone would feel they were treated equally.

[pegasus]

Hello yellowted, I am from the UK and I used to work with people with physical disabilities a few years ago and I worked with a few people with conversion disorder/dissociative motor disorder. At that time they were classed as having physical disabilities rather than mental health. I found with the people I worked with that they would have some good days and some very bad days, they all used wheelchairs and needed help with personal care.

I'm wondering why you are not getting the help you need in real life when obviously the people I worked with did get help. Maybe you could get an advocate to help you fight for what you deserve, the CAB should be able to help with this. I think it would be a good idea for you to get onto Adult Care and Support (social services) too, you are a vulnerable adult and need help with adaptions and equipment and help (financial) with having carers at home.

As for where you belong on PC boards, hey, you belong where ever you want!

[sabby]

(((((((((( yellowted )))))))))))

I'm wondering if part of your frustration may be coming from the fact that not many members are aware of your disorder, what it entails, how it affects you personally and the like. Sometimes, in our want to be supportive, there may be some questions or even assumptions (we're all guilty of making them from time to time) that may seem as though they are mocking you or not believing you. No one here should EVER question another member's diagnosis. If that ever happens, I really hope that you would let one of the Community Support Team members know this by either reporting the post or pm'ing one of us.

I will tell you that I do not understand what your disorder is all about. I haven't had a chance to read up on it, but I do hope to soon. Maybe it would be helpful to the members and to me as well, if you could possibly go into teaching mode for a bit. Maybe sort of a question and answer about your disorder and how it affects you and what you have learned about it. It's just an idea and of course it's totally up to you if you want to do something like that or not.

I know I have learned much in my years here at PC from members like you who suffer from illnesses and disorders that I had no clue about. I appreciate them for sharing their troubles and good times with us and giving us the chance to learn and grow and to ultimately support them.

Just wanted you to know that I do care how you feel and what you are thinking here yellowted.

[sabby]

Originally Posted by yellowted

it just feels that no matter where in the world i mention my condition it is never understood or i am not believed either that it is a mental health condition or that i can not get physio, the house adapted or whatever the other person percieves someone with the physical problems that come with it should be getting.i always have to justify why i can't get it. seing others with the same or even less needs getting more support/treatment/help on a daily basis is really getting to me. i am not jealous, it is great the support they get, i am disappointed that i/my dx is deemed not worthy of help or understanding.
i know in most places you have to pay for treatment, but here you don't which actually is great for recognised 'common' dx's but for those like mine it makes it impossible to get any.top that with having the dx questionned every time is very waring.

Another thought here yellowted. First of all, I'm really sorry that it's so difficult for you to get help in real life too. Even here in the states, some of the most ill folks have to fight so hard and sometimes don't succeed in getting the help they deserve. It is a travesty and honestly, I can't begin to imagine how it makes you feel.

You most definitely are worthy of help and support. Please don't let them keep getting you down. Remember, the squeeky wheel gets the grease....keep sqweeking and sqwacking as loudly as you can and as often as you can. Sooner or later it's going to fall on ears that are listening and a brain that is functioning!

Regardless of how your dx is classified, it surely is debilitating and you should have help to make your life easier and less stressful.

[Anika.]

Originally Posted by jimi...

Also if someone in this kind of group has an issue that does not belong to the topic they still post it in the section instead of posting in the section for the kind of issue. Which means instead of mixing with each other over the whole site, people lock themselves into a section, post all their stuff in there for social reasons.

I tend to want to post in the nonspecific sections because there I know someone will not question my presence...

Yellowted I am sorry you are feeling that way. You have been very helpful to me and took time for me, I wish I knew how to support you back too. But I care, and I hope you can feel you have somewhere to post. You really do belong here, we all do. I cannot imagine how hard it is for you to not be getting the proper support irl and here. I really think Sabby's idea is kinda good, if you were up to it. But I am going to learn about it, and I am always around here, I might not share the dx but I would be happy to be there for you.

Jimi, I know I am guilty of posting non bipolar things in the bipolar forum.. not for social reasons tho. I have wandered out of that forum quite a few times, and have sometimes been badly hurt when posting in other areas. So it's made me a bit forum shy. I still try to venture out and post or support people in other forums, but bearing my soul, or when I am feeling vulnerable I am afraid to put myself out to the other forums.

It's not always easy on here, I understand that. I even closed my account once, I just hope we can all get along. Yup I hope that too.

[-jimi-]

Originally Posted by Anika.

Jimi, I know I am guilty of posting non bipolar things in the bipolar forum.. not for social reasons tho. I have wandered out of that forum quite a few times, and have sometimes been badly hurt when posting in other areas.

I can understand that one. Then it is an effect of some of the issues on PC, not one of the causes as I see it. I also stay out of a lot of sections. Not so much because fear of being hurt but that I'm not allowed to take on someone if they hurt me...

[yellowted]

Thank you all for your kind words i really appreciate them.

i am definitely up for answering any questions you want to ask about my condition, so fire away .... if i type something which does not make sense point it out and i will ammend it as part of my condition means i don't always hit the right keys when correcting my speach to text software mistakes!

to start you off

what is it called? Dissociative motor disorder

where is it classified the World health authority number F44.4

What causes it? it was explained to me as being 'emotions from my past that i was unable or not allowed to process in the right way now surfacing in a physical way'

my background I was emotionally and sexually abused for over 10 years as a child/teen, mum decided to let the man stay in the family home because she did not want to grow old alone even though she knew what he was doing to me (she blocked it out and denied it). I moved 200 miles away at 19 to start a life without family ties but every week mother would still phone to tell me her life including what my abuser was up to! a few years later i met my partner, and gained the confidence to cut all ties with the family. my partner died of fibrosing alveoilitis and heart disease after a 10 year struggle with only me as his carer, at the same time i was working as a childrens nanny and was running and working in my own 36 place pre-school nursery and caring for an elderly friend, so was physically and emotionally exhausted.

how it started for years i blamed arthritis for my hurting legs as i had been dxd with it in my knee years earlier and it runs through the family. but gradually i began getting very tired, put it down to all the work i was doing and the stress of caring for a dying man- the love of my life.my doc said 'what do you expect' I picked up a bit after his death, but was a bit depressed, not to the point of being unable to function, but to the point i cried very easily and for hours at night, my patience was being tested by the childern at nursery..not me at all as i was the most patient person ever! gradually my hands started hurting and eventually the children could manipulate the toys easier than me! my doc just laughted and shrugged it off. then my asthma quadrupled in severity, my sphincter control got worse, and my legs were still getting worse to the point i could not stand still for the pain. i began struggling to function at all after lunch, needing to stay seated and eventually needing to lie down/sleep for 1.5 hours after a light lunch. i closed nursery and took a break from work hoping to rest up and get better, but things deteriorated even more to the point i was housebound, struggling to walk at all, my brain and legs/arms/hands began to not talk to each other, so i would go to pick something up and my hand would not move or i'd stand but one leg or both would not straighten, doc refused to come out to see me. 18 months later i took an overdose of rat poison as i could see no way out of this. i was relying on one friend to come every 6-8 weeks to go shopping for me, she came picked up the list, went came back put the shopping in the hallway and went. that was the sum total of my human contact for the whole 18 months! i was taken to a mental health unit and that is where they dxd me. funny thing is i felt far better having taken the poison than i had in months even before they took me in!

how is it diagnosed there is no real test or examination that proves it, I was diagnosed through observation in hospital, i since had MRI and CT scans to rule out other physical dx's. although it presents the problems associated with MS/Stroke etc, the scans don't they come back ok!

what is the usual course of it usually it comes suddenly and goes within a few months if treated correctly, though some cases can last over a year, in these instances it never fully goes and some experience the full effect for life.

i will continue this later as i am on envelope stuffing duty today!

(((yellowted))) ...

I am aware of your disorder, and it is dissociative in nature ... There was a lady in an anxiety/panic group I attended here in the USA because it was as close as she could get to anything that dealt with it directly here in the USA - which can still be pretty arrogant in its ignorance on a lot of things.

She, too, had horribly been abused throughout her childhood and her inability to process a lot of repressed memories was taking a debilitating toll on her physical body.

With that being said, I have also had a few run ins with some hardcore BP people here at PC ... They even went as far as to tell me I didn't have a right to post in BP because I'm not BP.

I stood up to them firmly and even asked moderators to delete my comments if they were not appropriate in that forum and the moderators permitted them to stand.

I may not be diagnosed as bi-polar, but I share many of the same symptoms with the diagnoses I do have ... Same goes for schizophreniza, borderline, etc. Therefore, for one diagnosis to tell another diagnosis they don't belong is highly inappropriate.

Furthermore, being that this is a public forum, there are many things that get posted that may apply or even trigger one or the other regardless of their diagnosis and they have a right to respond and share their experiences whether they share that exact diagnosis or not.

My advice to you is to not back down and to keep challenging the pack mentality that can present itself on some of these forums. You have a right to be here and to post anywhere you want.

Hopefully those who feel differently will eventually be enlightened and their knowledge of all aspects of mental illness and its impact on their lives and ours will eventually be expanded.

,
Pfrog!

[sabby]

(((((((((( yellowted ))))))))))))

Thank you very much for the explanation of your disorder. It's very helpful.

I would like to suggest at this time though, that you make a post in the DD forum with your explanation so that we can continue the conversation in the right forum. I hope that's okay with you. You can copy and paste your explanation into an new thread in the DD forum.

I really appreciate your situation and your willingness to be forthcoming with what it entails.

Because this forum is for issues related to the community and tech feedback, I'm going to close this thread at this time.