Hi I Suzanne. I want share we got stuffie sheep he’s name is meh-beh. I choosed that name cause I was saying sound of sheep and it’s beh but I say meh, then say beh. Meh-beh is at hubby’s house but I see stuffie cat Spookie here. Little say it’s hers but bigs say it’s mines too.

Suzanne

We’ve had an eye condition (retinopathy of prematurity) that caused us to be legally blind all our life. About ten to maybe fifteen years ago, we developed a cataract on our left eye. This is a known complication. We’d been operated on a cataract on our right eye in 1993, without a lens implant cause our retina specialist did the surgery. The cataract specialist at the Rotterdam eye hospital didn’t feel it’d have any benefit so refused to operate on us. In 2004, we saw an eye doctor for an unrelated problem and our father offhandly asked whether cataract surgery would make any sense. The doctor said that we’d have to decide whether we felt it could restore any sight. He didn’t offer any prognosis or exams that could predict this. Of course, we weren’t there for the cataract, and this was not a university hospital, so I understand.

Over the years, we’ve often had thoughts of what if, but I pushed them away believing I’d upset our parents if we didn’t accept our total blindness. After all, our parents had stopped taking us to the eye doctor in 1995 because, or so I thought, they felt we were blind anyway. Now that I’ve discussed the current round of eye doc visits with them a few times, I realize they probably fared on the advice of my retina specialist and on their gut instinct, having the best of intentions in mind.

About a year ago, I started discussing the possiblity of cataract surgery with my staff. One of the nurses, the first I told, was immediately hyper, and said that it’d be great if we could get even a tiny bit of vision back. I wasn’t so sure, thinking I’d upset the littles and re-enact the trauma of our vision loss if I went through the ophthalmology department again. After discussing the issue with a few other nurses, including my named nurse, I decided in January to ask my GP to refer me to my local university hospital’s ophthalmolgoy department anyway. We went there for our initial appointment on March 8, and were taken very seriously. The optometrist measured my vison, which was no more than a tiny bit of light perception. That hurt some of us. The ophthalmologist decided to order an ultrasound of my eye and to ask for my old records from Rotterdam and the eye doc I’d seen in 2004.

The ultrasound and a huge amount of other tests were done March 26. The ultrasound showed our left retina was still attached (they scanned our right eye too, but that had a total retinal detachment) and the optic nerve was fine, but there were some problems with the sclera (that’s part of the retina if I remember correctly) and the eye was very small (microphthalmia). The doctor, same as on March 8, hadn’t yet received our records, so he’d get me a new appointment if he got them.

So that new appointment was today, this time with different doctors. First, we saw the resident, who explained the complicatedness of cataract surgery in our case. She said that normally surgery is done under local anesthesia, but if we couldn’t handle this, she could ask for general anesthesia should surgery be done. I was a bit stoic but our husband said we’d already had difficulty handling eye exams, so general anesthesia may be best. Then the doctor explained that she had gotten my records but couldn’t read them. This made it hard for her to say how much we might gain from surgeyr. “What do you think?” she asked. Argh, I have no idea.

The specialist, one of the two doctors doing cataract surgeries in this hospital, came in and apparently either could read my records or somehow otherwise figured stuff out, cause he said we might gain hand motion vision. This translates to about 1/100 to 2/100 acuity. He apparently considered this worth enough not to kick me out of his office for. The resident had asked whether I would prefer to go for surgery, and I said yes I would. The specialist did explain the risks, which included retinal detachment and bleeding, but then he left the decision pretty much with us. I decided to get us put onto the waiting list for surgery.

Then we went to a nurse to have a load of flyers given to us and to discuss the nursing issues facing us once we’re going in for surgery. I did mention we have a dissociatve disorder, because I’d heard from someone in a similar situation a few years back that anesthesia could make this worse. The nurse had obviously never heard of this, couldn’t spell it, and I was too tired and unsure of myself to mutter “multiple personality disorder” or some equivalent of it. We have an appointment with the anesthesiologist on July 1, and it may take forever before we’re called in for surgery. Oh well, after having had no vision for ten or more years, a wait of so many months doesn’t matter to me.

Katinka

Trigger for eating disorders.

Okay, feeling odd. Some summer camp person tried to friend me on Facebook thinking I might be interested. Didn’t care to check my profile, just my friends list which is full of participants. Again, something I’m too old for. It’s not like I’d fit into any summer camp – we went to one once in 2000 and were horribly outcasted -, but argh. I want our body to be a teen again. Like be able to do teen things without getting strange looks. I wish we could make friends back when the body was a teen. Besides, I want all that freaking body fat to go away. I keep wanting to have our weight from when we’re a teen back. I know I need to lose a freaking amount of fat for that, but well. The camp was for eating disordered people. Heck we don’t even have a real eating disorder. The thought of this makes me want to purge.

Agnes

Adapted and expanded from a post to a Facebook group. Someone’s post there reminded me to talk about the need to be validated.
In a way, every mental health experpience is genuine, even those seen as done for attention, and being told you may have imagined your symptoms, isn’t helpful. I have various diagnoses which my family and some other people reluctantly accept after they noticed telling me I was a fake/attention-seeker/wannabe didn’t make me better and in fact made my symptoms worse (maybe that’s subconscious attetnion-seeking but really it doesn’t matter). Now just over the week-end, as you know, I was told by a support group that they doubt my diagnosis is valid and want a better one before I can come back. At first, that caused me to suppress my symptoms, but within a day, it caused my symptoms to get worse.

I think however that we do need some healthy skepticism from others, in the sense that they should validate our experiences but not turn us into our mental illness or accept our every behavior. For example, if people give attention only when you display symptoms, as some people in my life have done, this is a surefire reason for symptoms to get worse. It is becoming clear in psychiatry that, for example, even people with psychotic symptoms should be validated to some extent. Otherwise they will not trust their doctors and will not be willing to take antipsychotic medication, and with good reason. I have never been psychotic, although I’ve had some symptoms that headed in that direction. Even in that state, it took a doctor validating me before I was able to be medicated successfully.

I believe strongly in the idea that unconditional acceptance of the person (not every behavior!) is key, but this includes giving positive attention and being interested in the person as a whole rather than just their illness. This does not mean constantly asking when the mentally ill person is finally going to get a job, for example. Rather, it means being genuinely interested in their day activities and helping them find ways to make their lives more fulfilling. The mentally ill person’s wishes should be the center, even though they cannot be fully catered to. I used to hate rehabilitation, with its focus on the person’s strengths and capabilities, until I figured out that it is really about what a person wants to do with these strengths and capabilities.

Clarissa

Hi I’m Milou. I’m 8. I like nice jokes and riddles. Do you know why the baker stopped making donuts? He was tired of the hole business. Haha. I like English. Gonna see more jokes now cause I feel a bit sad and want something to cheer me up.

Milou

Jay Young of Astraea’s web made some valid points about trauma/buse disclosure in “real” multiplicity in her comment on Brenda’s post. I’m not as witty as Brenda is, but here is a list of rules for abuse disclosure if you want to be a proper multiple.

1. Multiplicity is always caused by severe, prolonged, horrific abuse, usually sexual abuse and in most proper cases satanic ritual abuse. I know the Dutch association for people with dissociative disorders had in their newsletter an advice column in which the columnist said other trauma can cause DID too, but this is not apparent anywhere else.


2. For this reason, you must on occasion drop words like “SRA”, “programming”, etc. in conversations about your DID.


3. In the offline meetings of the Dutch DID support group at least, you cannot go into detail about your trauma, or you can if it was not bad anyway. I was actually pretty much expected to disclose some details of stuff I consider traumatic.


4. You must have particular triggers, such as SRA holidays or certain colors. You cannot say why these trigger you, but it’s no problem that you dissociate when such a trigger comes up. Other people constantly doubting your sincerity obviously can’t be a trigger.


5. Validating others’ SRA meories is of utmost importance, but if you’ve gone through more mundane trauma, no-one is required to validate you.

Katinka

Feeling kind of weird. Just drafted a post in which I reviewed the criteria of histrionic personality disorder in relation to whether I meet them. This is what my therapist says that might be going on in the unlikely event that we fake the DID. Well, when looking really suggestively, I could meet just enough criteria for a diagnosis, but that’s not how diagnoses are supposed to be done, especially not personality disorder diagnoses. It’s got to be a pervasive pattern of in this case dramatization, emotionality and attention-seeking.

Of course, there are other thigns that could explain my allegedly fake DID. Factitious disorder, where a person fakes an illness in order to be seen as sick. This is more commonly seen with physical illness, but in DSM-IV, there’s a subtype with psychological symptoms being faked. No-one can say whether I have this. Like, I could, but people could easily question my motives. I’m glad that, in DSM-5, the psychological subtype is abolished.

Katinka

Here’s some stupid rules for being a real multiple according to the Dutch DID community. At least, it’s what we’ve been told by our so-called support group folks both online and off:

1. You can’t use jargon like “co-conscious”, “inner self helper”, etc. if you’ve not had your diagnoisis forever. This is not supposed to be familiar language to a person just diagnosed.


2. Even if you know you’ve got parts because you’ve established a fair amount of communication, you can’t walk into your therapist’s office saying you experience parts in yourself. In fact, you cannot have obvious dissociative symptoms. According to what I’ve been told, saying things happen to you but not quite to you, is not appropriate either (which is what I really came into therapy with).


3. You must’ve gotten into therapy with seemingly irrelevant symptoms like depression, self-harm, etc. Then it’s the therapist’s duty to figure out you’re multiple, but they can’t just straight out ask if you experience parts in yourself. On occasion, they can, but you must be completely clueless to the fact that it’s not normal.


4. You must have some doubts about your diagnosis, and you must fear that it’s all real. If you fear you’re fake, you’re obviously already a faker.


5. You must not switch too openly or demand switches be acknowledged, cause DID is something that’s supposed to be hidden. Keeping the dissociation hidden must be an end in itself. Note that you won’t get a diagnosis of DID if the diagnostician hasn’t seen you switch.


6. You must want to integrate.


7. You cannot have littles who write properly. You also cannot have littles who write improperly but on the right subforum, cause how are they supposed to know where to write? However, you can’t have alterrs write on the main forum either. Why else would there be specific forums for alters?


8. You must recognize just enough of what other DID’ers, who obviously all are not fake, say they experience, but not too much. You must be able to articulate your experiences in your own words, and others determine whether you use your own words.


9. You must have time loss, but how you’re supposed to know you have time loss, is unclear. You can’t just say you lose time when others come out, cause how do you know? You cannot say you don’t remember somethign when asked, because then obviously you could pretend you forgot. I don’t know how a therapist is supposed to realize you lose time if they cannot ask, especially given that implicit memory is often intact in DID, so DID’ers act like they do remember what other identities did.


10. In meetings, you must present as the host (with the birth name) at all times. You must be oriented to the present if you want to participate in meetings. On the other hand, you cannot actually be the person with the birth name, cause that person must’ve gone to sleep, been gone at an early age or be totally unaware of any others. How are you supposed to come to a DID meeting if you are clueless about other personalities?


11. You must have survived horrific abuse, but you cannot talk about it in meetings.


12. You must validate others’ every experience, but you cannot say you can relate.

Brenda

Trigger for language.

I’m fucking pissed off. I want all those stupid assholes who tell me I’m fake to shut up and sod off. It’s not like a trauma center specialist can make me go away. My T tried for fucking two years to make Astrid take full control and silence us. We’ve known for years that we’re many, long before we’d ever heard of DID. We may or may not technically meet the criteria for DID, but screw that. We’re many and no-one’s gonna tell me otherwise.

Brenda

When are fellow patients/clients going to stop diagnosing each other? This afternoon I was rejected by a support group for DID that I’d been attending monthly for two years, because the others felt I made an off impression (I recognized just a bit too much of other people’s stories) and they required a better evaluation before I could be seen as an officially-diagnosed client and allowed back into the group. Isn’t that a professional’s duty not a fellow client’s? I mean, to diagnose a client and determine if further testing is needed?

It may be because I coome from the autistic community, where it is not done to diagnose other autistics and where people who strongly self-identify as autistic are just as welcome as those with a formal diagnosis. I can understand that this may not work for a group of traumatized people like those with DID, so I can see why the group demanded a formal diagnosis. However, I have an official diagnosis. It may not have been done exactly as should, but I’m pretty sure a therapist, if spending enough time with the client, can always diagnose disorders better than a fellow client.

Okay, I’m familiar with the Rosenhan experiments, where the patients did pick up who was fake and wo wasn’t but the professionals didn’t, but that’s assuming a patient sees their fellow patients more often than they see a therapist. For this group, this is just not the case. And it’s not like patients don’t have a bias when looking at other patients, while therapists do. I think everyone has a bias equally depending on what information they’re given. If patients could do diagnoses better than therapists, therapists could spend lots more hours on actual treatment, and it’d be way cheaper for the health insurance companies too. Wow, the Dutch support group for DID has found the solution for the raising healthcare costs.

Clarissa