Anyone have DID/OSDD with conversion disorder?

just wondering how common it is for people with DID/OSDD's to also have conversion disorders (now known as Functional Neurological Disorder).

Your specialist may have also referred to it as 'psychogenic' symptoms if you were diagnosed with it many years back?

A conversion disorder/FND would be where psychological/mental stress causes physical symptoms usually that specialists can find no physical cause for. It can also be where a symptom originally genuinely appeared (due to a physical cause) but the cause for the symptom is no longer present


There was a fascinating case of a german woman who was blind due to an accident, who 4yrs into counselling treatment for DID regained the ability to see words but only as ONE of the alters. In her case most of her alters were blind and 8 of them eventually regained sight, 2 remained blind (she had 10 alters).

Also different in her case (because of the DID I suspect) her vision was able to switch on and off 'like a light switch' depending which alter was up front.

In the case of the German lady it was originally thought to be 'cortical blindness' and the fact it wasn't didn't occur to anyone until that first alter regained the ability to 'see words' during a therapy session many years later (she had a guide dog and had been living as a blind person for many years).

https://www.medicaldaily.com/blind-woma ... -10-363300

They stated

"Scientists are still not completely sure how individuals with this condition are able to switch their conditions on and off, but conversion disorders are usually treated with a combination of counseling and physical therapy. For B.T., therapy allowed her to regain sight in all but two of her 10 personalities.

"These presumably serve as a possibility for retreat," Strasburger told Braindecoder. "In situations that are particularly emotionally intense, the patient occasionally feels the wish to become blind, and thus not 'need to see"

In our case I believe it was the autistic's mind intense sound phobia that had an intense wish to not be able to hear or to be able to switch off/better control incoming volume although in our case it seems because we were unable to imagine that result when younger, it didn't occur until after the body had actually experienced 'hearing loss, (which was entirely coincidental and down to another condition the body was born with) that the benefits of this was understood.

As an adult, once one alter understood that our current remaining 'hearing difficulties' were more due to auditory processing disorder all other alters have regained the ability to hear better, although we all still struggle with deciphering speech and seperating it from background noise. Everyone experiences Tinnitus and sensitivity to some sounds and pitches.

'Deaf Thea' no longer identifies as culturally deaf and now blends with Kit to produce a 'new host' for some social situations/appointments. (although we don't currently have many as in lockdown again, but they are planning to be the future 'main host' if life ever returns back to normal!)

Regarding the physical mobility of the body, everyone except 'Maddie' responds to the body as it is now (ie recognises it can do more than it could) Maddie still appears to be 'stuck in the past' and identifies with the level of physical disability we originally experienced after the neurological attack that happened in the bodies 30's.

There must be others out there with something similar? or is it for us the combination of the conditions mixed together (autism/CD/dissociative disorder of some kind) that has created the unusual difference between how the alters are?

Is the fact we were told to keep 'our world' a secret, meaning we've been undiagnosed and had no therapy specifically addressing either the CD or dissociation in the bodies entire life? (now in its 50's) eg alters have been allowed to develop at will without any outside interference/influence from counselors etc?

I am sorry, I didn't read everything you wrote
I just wanted to say that conversion disorder is considered an outdated concept by leading voices of the ISSTD. they propose that the correct discription would be 'somatoform (structural) dissociation' with positive and negative symptoms. it makes it clear that this specific kind of somatoform symptom is a result of trauma and thereore found in traumatized people. the reasoning is excellent.
Nijenhuis wrote a whole book about it, called somatoform dissociation, in case you want to read about that persepective.
I have never heard it called functional neurological disorder before and that word actually seems to describe something other than somatoform dissociation.

oOo The depiction given by Birdsong sounds very accurate to what we experience here.

oOo Not all of us has the same level or types of of sensory sensitivities, sensory distress, and various dys- things. I never gave it a second thought because it is logical to me that different ways of connecting the brain ( = different alters) would have different abilities and peculiarities regarding everything linked to the brain's function, and different types of somatisation of the stress.

oOo I guess that what felt like an evidence to me, is not as much an evidence than I thought.

--

van H.

NORD (National Organisation for Rare Disorders says

"Historically, FND has traditionally been viewed as an entirely psychological disorder in which repressed psychological stress or trauma gets ‘converted’ into a physical symptom. This is where the term ‘conversion disorder’ comes from. Psychological disorders and stressful life events, both recent and in childhood, may be risk factors for developing the condition in some patients, but they rarely provide a full explanation for the cause of the condition and are absent in many patients. Patients do not have to be depressed, anxious or the survivor of adverse childhood experience to develop FND"


https://rarediseases.org/rare-diseases/fnd/



In specific reference to the German lady 'BT' also having DID:

"Psychogenic blindness is a type of conversion disorder — a physical condition that cannot be explained by physical damage. These conditions are usually caused by an extremely stressful or emotional crisis that will manifest as a physical problem. Other types of conversion disorders include inexplicable paralysis or speech problems.

Scientists are still not completely sure how individuals with this condition are able to switch their conditions on and off, but conversion disorders are usually treated with a combination of counseling and physical therapy. For B.T., therapy allowed her to regain sight in all but two of her 10 personalities.

"These presumably serve as a possibility for retreat," Strasburger told Braindecoder. "In situations that are particularly emotionally intense, the patient occasionally feels the wish to become blind, and thus not 'need to see.'"

Source: Strasburger H, Waldvogel B. Sight and blindness in the same person: Gating in the visual system. Psych Journal. 2015.

Admittedly the case was in 2015 and its possible more has been discovered since then. Though it seems to be extremely rare and I can't find another documented case online of someone specifically with DID also and the way it can affect some alters but not others.

Though this does kind of make sense given that people on here have reported things such as child alters being unable to read but adult alters can. as logic would dictate that if the body was adult and had learnt to read that everyone within the body should be able to read. (obviously this doesn't take into account the theory that different alters can carry and/or have access to different memories)

Obviously it's not that simple, so in that context it can be entirely possible that one alter can do something that another physically cannot. Although in BT's case she was blind for 15 years before she had the therapy for DID and even then it had taken 4 years of it to reach the point where one alter 'read a word'

My audiograms indicate deafness where 'Thea' had taken them. I've also had an MRI and of course you can't wear hearing aids in the room and there's some kind of intercom system within the machine so they can talk to you but at no point did anyone say my brain showed it heard the noises (from the machine) or that it appeared to be recognising speech (as would show on the brain of an 'hearing person' in the machine). I don't know if I'd get different results now (the MRI was 17yrs ago)


I've thought about having counselling after the pandemic (when its safe to be out) without mentioning other alters initially, to see if they would come forward within a session eventually and a psychologist would come to the same conclusion. I'm not sure though whether they would co-operate and 'come out on demand' in front of someone else that they knew was there to assess or judge us. Many of the system still prefers to remain 'secret' in relation to people we interact with in the outside world.

Wow just found this again from 'us'...Kit studied some really deep stuff!!

I looked up the article about somatic structural dissociation but really struggled to make sense of it (but then I don't have Kit's brain!) ...though maybe we share the same brain?...I just seem to have got the bit that's not as bright!!

So I ..Jody am sat in our front room typing..I can hear the keys when I hit them. I heard a bird outside a minute ago (the doors and windows are closed) and I can hear a lawn mower somewhere in the distance. when I do watch TV (I don't get chance much) I don't usually have subtitles on..I can follow it but never remember any of it!

Kit used to watch Star Trek with subtitles she could hear the sounds but struggled with understanding the speech (dialogue) but can remember entire episodes and remembers the visual as video freeze frame with what characters were doing on the screen at the time and what the subtitles were showing at that point!

How is it even possible that I don't have this ability AT ALL? but then I have more social skills than Kit and a completely different personality. It really blows my mind how its possible!!

I can see where our 'child littles' could have come from but I can't even begin to explain Phoenix! (the changeling) unless she was a product of our hosts/originals imagination when they were a child?

Our host still has some hearing difficulties and tinnitus and the body does actually have arthritis now (which is not a 'psychogenic' condition, the blood clot wasn't 'psychogenic' either and left 'real' - actual physical - damage to the veins and leg). The host experiences Tinnitus more severely than anyone else does.

If the arthritis is having a flare up I feel it when I'm out front as much as the host does but several years back 'Maddie' was in a wheelchair but Kit could walk when she came out!

So were 'Maddie's disabilities' psychogenic back then? ...she wasn't 'faking' they were very real to her...why would you sit in a wheelchair for over 10 yrs if you could walk? ...but she didn't even know she could until after Kit came out and eventually revealed herself to Maddie.

so has the body/host recovered from the 'psychogenic' illness after all these years and just what's left is the actual physical stuff that is visible? (arthritis, vein damage) or can be proved (ie the history of autism from a very young baby)

Sorry, I feel the host is pushing some of these questions forward to me...only the first few paragraphs were originally my thoughts after finding this!

She also wants to know if anyone can explain...if the dissociation was tied to the somatic symptoms why does she still have alters after the neurological symptoms have gone?

Jody (and host)

I will do my best to answer your question with the little knowledge I have on these matters.

KitMcDaydream wrote:I looked up the article about somatic structural dissociation but really struggled to make sense of it (but then I don't have Kit's brain!) ...though maybe we share the same brain?...I just seem to have got the bit that's not as bright!!

You did not "get the bit that's not as bright". You struggle to use the full abilities of the brain. It is different. Being dissociative also means dissociating from some abilities, knowledge, and so on.

KitMcDaydream wrote:I can follow it but never remember any of it!

From what I know, dissociation can work in two different ways. Either, we cannot access memories that are here somewhere in the brain. Or, we cannot imprint the memories in the brain. Different ways to dissociate lead to different ways to deal with the memories. Each alter has their own way of dealing with the brain's abilities. Some aspects of DID therapy include, allowing every alter to have access to the full abilities of the brain.

KitMcDaydream wrote:Kit used to watch Star Trek with subtitles she could hear the sounds but struggled with understanding the speech (dialogue) but can remember entire episodes and remembers the visual as video freeze frame with what characters were doing on the screen at the time and what the subtitles were showing at that point!

Yes, it seems her way of dealing with spoken language and the visual inputs, are very different from your own. We, too, have times when the sensory processing disorder hits us differently than other times. Some days when we need a subtitle to understand what people say. Other days when we can read AND follow a podcast at the same time and process both perfectly (some days they need to both be in the same language and some days, they need to be in different languages).

KitMcDaydream wrote:How is it even possible that I don't have this ability AT ALL? but then I have more social skills than Kit and a completely different personality. It really blows my mind how its possible!!

This is because different alters access the brain's abilities differently. It is a little bit like, having different programs on a computer, each of them runs differently and treats different informations. Some have access only to some files. Some can access all files. And so on.

KitMcDaydream wrote:I can see where our 'child littles' could have come from but I can't even begin to explain Phoenix! (the changeling)

Sometimes, we need to be able to adapt to whatever fudge life (or abusers) can throw at us. Being a changeling helps adapting very quickly to an ever-changing situation. Therefore, it makes sense (in my opinion) that a person in an unstable environment, might develop a changeling alter able to adapt quickly to anything without the need to switch, especially if switching is exhausting or not an option at some times.

KitMcDaydream wrote:The host experiences Tinnitus more severely than anyone else does.

Not every alter has the same sensitivities than others. For example, I can deal with sensory overloads a little bit better than others. Zami has a lot of issues with the level of brightness of an environment. And so on. Even emotions are dealt with differently, and we appreciate different foods. Ulysses finds some foods disgusting that others really love to eat - and apparently I might be the only one finding dried salted plums, an enjoyable treat.

KitMcDaydream wrote:Several years back 'Maddie' was in a wheelchair but Kit could walk when she came out!

Same issue than before. As long as there is no physical damage and that it is somatic, different alters can use different abilities. For example, I am able to use the full muscle abilities of the body. The girls in the system are less able to use the body's brute force. If Lust (for example) tries to do push-ups, she will be able to do only half of what I am able to do. Because her way of using the brain, means that she can only use half of the body's strenght.

KitMcDaydream wrote:So were 'Maddie's disabilities' psychogenic back then? ...she wasn't 'faking' they were very real to her...why would you sit in a wheelchair for over 10 yrs if you could walk? ...but she didn't even know she could until after Kit came out and eventually revealed herself to Maddie.

This is exactly what somatic issues are all about. They are real issues, they are not "faked" issues. But they are not physical either: the issue is how we are able to use our brain's abilities at some point.

When someone gets stomach cramps due to anxiety, it is somatic because the issue is the anxiety in the brain and how the brain reacts to the anxiety. It does not mean that the stomach pain is fake! But it means that in order to stop the stomach pain for good, treating the stomach will lead nowhere: the brain needs to be treated.

KitMcDaydream wrote:so has the body/host recovered from the 'psychogenic' illness after all these years and just what's left is the actual physical stuff that is visible? (arthritis, vein damage) or can be proved (ie the history of autism from a very young baby)

I cannot answer this question. I do not have enough knowledge to be able to say when a somatic issue is "healed", when it is simply dormant... I am unable to say if, when a somatic issue comes back, it means that it never was really gone or that it is a relapse. I do not have enough knowledge.

But I do know that physical issues are common for all alters, and somatic ones are shared by some alters only. Which gives hints on how to deal with each of them.

KitMcDaydream wrote:Sorry, I feel the host is pushing some of these questions forward to me...only the first few paragraphs were originally my thoughts after finding this!

There is nothing to apologize for. You have questions, it is normal to look for answers.

KitMcDaydream wrote:She also wants to know if anyone can explain...if the dissociation was tied to the somatic symptoms why does she still have alters after the neurological symptoms have gone?

The dissociation into alternating identities, becomes a permanent structure of the brain. In order to stop being dissociated into alters, one needs a lot of therapy to slowly change the brain's structure into a more integrated/fused one. It takes specialized therapy.

Somatic issues are not caused by dissociating. They have the same common cause than the dissociation. A little bit like, a rose bush grows thorns AND roses AND leaves. Removing all the thorns does not remove the roses nor the leaves since the bush is still here.

But the somatic issues are more imporessive and puzzling when they are contained into some alters only. It means that they come and go as easily as alters do. Untill, of course, they are treated - then, they are gone for good. But the alters still remain, because, fusing all the alters into one identity, takes time (years) and therapy. It is only the very last step of DID therapy and most systems will never get there - or never want to get there.

The important thing in my opinion is to treat the issues that are problematic on the everyday life: somatic issues, traumas, amnesia, difficulties accessing the full abilities of the brain/body, learning to have healthy boundaries, learning to deal with emotions in a healthy way, communication between alters, and so on. From memory, it is also what the ISSTD Guidelines advise: first treat the issues about everyday safety and well-being and balance, then move on to the next step, and so on, and when all the therapy is done, if wanted, let's talk about fusion.

I hope I answered most of your questions. I also hope that you will recieve more accurate answers regarding the points I could merely brush due to only knowing basic, surface knowledge about somatic issues and the like.

__
David.

Thank you for answering! We appreciate we are 'an unusual case' compared to most and that others won't have all the answers, but most of you guys (in general on this board not just your system) have been dealing with knowing about your alters and stuff for much longer than we have and seem to understand your DID better.


Just one thing where you said

"I cannot answer this question. I do not have enough knowledge to be able to say when a somatic issue is "healed", when it is simply dormant... I am unable to say if, when a somatic issue comes back, it means that it never was really gone or that it is a relapse. I do not have enough knowledge"

In theory..could the issues go dormant if the alter that had them did? I mean Maddie went inside and hasn't emerged for years and the body seems to have got stronger!

The host is wondering

..if Maddie returned in future would she bring all the issues back with her?

or...is it likely those issues have gone because Kit made her aware that her belief was false? ie that she could not walk at all, could not be true because Kit could? (Maddie had not been aware she was alter/ANP or that there was others, which maybe why this carried it for so long?)..being misdiagnosed originally didn't help either!

Thanks

Jody (and Host)