[toesquasher]

we are going to a new doctor soon and we composed this letter. We would love feedback and suggestions on things to add, emphasize and/or eliminate. Thanks!
Dr.
I’m writing this because chances are that I’m not going to be very verbal when you see me. Due to my extensive medical history, doctors scare me. As a result of that and abuse I suffered as a child, I have Dissociative Identity Disorder (formerly known as Multiple personality disorder). This means I have at least twenty different alternate personalities that share my brain and body. I have little control over who comes out when triggered and medical situations definitely trigger us. Most of the alters are children, some of whom are non-verbal. In light of that fact, I thought it best to explain ahead of time what to expect during the appointment and what I’d like to get out of it.
We have Spina Bifida and all that goes along with it. Bladder issues included. Back in 97 we underwent a surgery that reconstructed our bladder and made a passageway from the bladder to the bellybutton, which allows us to cath that way. Cathing the normal way for us proved to be impossible due to the excruciating pain it caused and the subsequent trauma that resulted. We have been forever traumatized by this experience. So, needless to say, coming to a urologist is quite terrifying for all of us. We have a regular urologist but he has said that this issue we come to you with is unavoidable and non-fixable. We disagree. You see, for as long as can be remembered, there has been “stuff” that comes out of the hole in the bellybutton. It is rather thick, gooey, and smelly. We get triggered by it whenever we cath. Of course, just the simple act of cathing is triggering for us, so we admittedly do it as infrequently as we can. Our urologist is forever after us to cath more often, but the fear and anxiety cathing creates prevents this. We are all working hard in counseling to overcome the traumas experienced and become one again. It is a long, difficult process. In the meantime, some of the older alters realize that periodic medical treatment is necessary and that is how we got to your office. However, whenever faced with a real doctor, it is one of the little ones inside who comes out and interacts with the doctor. That is why we felt it a good idea to write ahead of time so that you can deal with us with a better understanding of where we’re coming from.
Now, the number one problem we face with doctors is that we are petrified of touch. Especially touch on the part of us that we call the tummy (for the sake of the little ones). You see, when we were abused as youngsters, our abusers would rub our tummy before proceeding to other parts of us. We used to love having our tummy rubbed and the little ones often still ask to get our tummy rubbed. But the horror associated with this act and what followed renders us all completely mute and paralyzed. (We even have incredible difficulty touching our own tummy, which is another barrier to the better self-care that we should have). To make matters worse exponentially is the experience of the surgery to help us cath this new way. We were not only terrified of the whole thing but no one bothered to explain what was going on in a manner we all could understand. All we knew at the time was this doctor came in everyday to look at and touch our tummy and we have a giant scar to prove it. So, the prospect of someone touching our tummy is far beyond frightening. Our usual urologist is used to the way we are when around him……….but we feel we need help that he’s unable to give. And, just so you know, having a female doctor does not reduce our anxiety, as it was a man and woman team who abused us. That being said, we would really like help with our situation. The older of us know that it is for the greater good of all of us that we are here and allow an examination to take place. We may be absolutely mortified at the touch of a doctor but we will do our best to allow what needs to be done. Please understand that any opposition comes from a place of terror, not a place of defiance or anger. Please go as slowly and gently as possible.
Lastly, we need to tell you one more thing. Most of us inside are under the age of twelve. So when you speak to or touch us, keep that in mind. We tend to get overwhelmed and frightened very easily, so please explain what you are doing so we can understand and know what to expect.
Thank you for reading our letter and taking those things which were said into consideration before and as you treat us.
From all of us.

[ThisWayOut]

That's a really good idea to help the appointment go a bit better. I'm sorry that it will be triggering regardless. I hope the doctor will be receptive.
Wwill this be given to the dr before-hand with plenty of time to read it? I would likely start with what the issue is, what has been done about the issue, what is helpful during the appointment, and then go into the history/more diagnostic detail around the DID.

If you are just taking this with you to the appointment, most doctors will look at the chunk of text then not pay much attention to it (they don't get much time with individual patients if you are in the US so they don't want to have to read much. it's crappy, but the sad reality of our medical system). If you are personally taking it in, try bullet-points or a quick summary that is no more than a few sentences as the opening of the letter, then go into the detail after that. It will allow the doctor to get all the pertinent info quickly and read more if s/he chooses afterwards.

Also, it might be helpful to add a blurb about how you would get home safely after the appointment if you do get triggered. Will someone be going with you (even if they sit in the waiting room the whole time)? Will you be able to find a way to ground yourself after the appointment? What helps the doctor believe you can safely leave? If the doctor doesn't know much about DID, s/he may be more hesitant about allowing you to leave after the appointment. It might be a good idea to help put her mind at ease about your ability to safely navigate back home...

[amandalouise]

Originally Posted by toesquasher

we are going to a new doctor soon and we composed this letter. We would love feedback and suggestions on things to add, emphasize and/or eliminate. Thanks!
Dr.
I’m writing this because chances are that I’m not going to be very verbal when you see me. Due to my extensive medical history, doctors scare me. As a result of that and abuse I suffered as a child, I have Dissociative Identity Disorder (formerly known as Multiple personality disorder). This means I have at least twenty different alternate personalities that share my brain and body. I have little control over who comes out when triggered and medical situations definitely trigger us. Most of the alters are children, some of whom are non-verbal. In light of that fact, I thought it best to explain ahead of time what to expect during the appointment and what I’d like to get out of it.
We have Spina Bifida and all that goes along with it. Bladder issues included. Back in 97 we underwent a surgery that reconstructed our bladder and made a passageway from the bladder to the bellybutton, which allows us to cath that way. Cathing the normal way for us proved to be impossible due to the excruciating pain it caused and the subsequent trauma that resulted. We have been forever traumatized by this experience. So, needless to say, coming to a urologist is quite terrifying for all of us. We have a regular urologist but he has said that this issue we come to you with is unavoidable and non-fixable. We disagree. You see, for as long as can be remembered, there has been “stuff” that comes out of the hole in the bellybutton. It is rather thick, gooey, and smelly. We get triggered by it whenever we cath. Of course, just the simple act of cathing is triggering for us, so we admittedly do it as infrequently as we can. Our urologist is forever after us to cath more often, but the fear and anxiety cathing creates prevents this. We are all working hard in counseling to overcome the traumas experienced and become one again. It is a long, difficult process. In the meantime, some of the older alters realize that periodic medical treatment is necessary and that is how we got to your office. However, whenever faced with a real doctor, it is one of the little ones inside who comes out and interacts with the doctor. That is why we felt it a good idea to write ahead of time so that you can deal with us with a better understanding of where we’re coming from.
Now, the number one problem we face with doctors is that we are petrified of touch. Especially touch on the part of us that we call the tummy (for the sake of the little ones). You see, when we were abused as youngsters, our abusers would rub our tummy before proceeding to other parts of us. We used to love having our tummy rubbed and the little ones often still ask to get our tummy rubbed. But the horror associated with this act and what followed renders us all completely mute and paralyzed. (We even have incredible difficulty touching our own tummy, which is another barrier to the better self-care that we should have). To make matters worse exponentially is the experience of the surgery to help us cath this new way. We were not only terrified of the whole thing but no one bothered to explain what was going on in a manner we all could understand. All we knew at the time was this doctor came in everyday to look at and touch our tummy and we have a giant scar to prove it. So, the prospect of someone touching our tummy is far beyond frightening. Our usual urologist is used to the way we are when around him……….but we feel we need help that he’s unable to give. And, just so you know, having a female doctor does not reduce our anxiety, as it was a man and woman team who abused us. That being said, we would really like help with our situation. The older of us know that it is for the greater good of all of us that we are here and allow an examination to take place. We may be absolutely mortified at the touch of a doctor but we will do our best to allow what needs to be done. Please understand that any opposition comes from a place of terror, not a place of defiance or anger. Please go as slowly and gently as possible.
Lastly, we need to tell you one more thing. Most of us inside are under the age of twelve. So when you speak to or touch us, keep that in mind. We tend to get overwhelmed and frightened very easily, so please explain what you are doing so we can understand and know what to expect.
Thank you for reading our letter and taking those things which were said into consideration before and as you treat us.
From all of us.

great letter but Im concerned you may be jumping the gun a bit...

some questions to think about...

what do you know about this new doctor? is this a medical doctor or mental health doctor.
does this treatment provider already deal with having DID type patients?
what types of treatments do they offer?
what type of mental health agency does this doctor work for?
what is the first appointment like with this doctor?

and many other general first time seeing this treatment provider questions people normally have...

most people going to a or a new treatment provider for the first time do not just jump right in to long descriptions and long letters telling them something like hey I have DID and 20 alters that I cant control what they say and how they behave and dont touch my tummy because that upsets the younger alters.

usually all thats needed is filling out the intake forms and signing the release of information form that allows the treatment provider to get copies of your past medical and mental health records. some doctors offices are also connected to the nationwide medical database where treatment providers just log on and type in your social security number, name birth date and your mental and physical health records come up. example I just saw a new doctor as a referal. I didnt have to go into any letters or legnthy details. they typed in my name, birthdate and SS number and they automatically knew I had a past history of DID.I was asked a couple simple non triggering questions and was examined. they even asked me if I wanted someone I knew to be in the room with me during the exam.

my own suggestion about your letter is what I did on my own years ago when I saw new treatment providers...I would keep it short and sweet (doctors dont have much time and keeping it short and sweet limits their jumping to conclusions and assuming something else because they only had time to skim the letter to find the basics)...

Something like on the forms you fill out in the lobby while waiting for the appointment and it asks what your history is write your diagnostic labels,

then at the bottom of the page or on the back of the paper write something like Im a dissociative, medical exams cause me to dissociate, please take time to explain things to me and no sudden moves would be greatly appreciated. my main physical trigger points are my stomach region and being touched in general. should I happen to switch into an alter please stop the exam and explain what is happening. I am open to answering any questions you may have.

that right there said all the treatment provider needed to know on the first appointment.

[toesquasher]

Thanks so much for replying!! I wasn't sure if anyone would.
I intend to fax it to his office as soon as possible since my appointment is on the 17th of this month. My hope is he'll read it prior to seeing me.
I am grateful for your suggestions. being succinct has always been hard for me as I am a talker, but I will try and condense things. I've never been able to summarize things well, but I'm getting better....
I hadn't thought of the aftermath of the appointment. Very glad you brought it up. I'll be sure and add a little info so the doctor does not worry too much about me. I usually switch back to myself after the doctor leaves, so should not have a problem.........but it's good to be prepared.
Thanks again for the feedback!!!!!!!!!!

Good job. I've got a notebook of facts written out because when I get into a talk situation, I got too many voices flying that I get side tracked. I want to walk in there and say, "Nice t meet you, but shut up till I'm done" with a smile.

[Ocean5]

Before my first meeting with therapist/physiatrist her office had sent over all these forms and questionnaires to fill out. When I sat down I told her I hoped she could read my handwriting. She said she understood enough of it, and wished more of her patients were so honest and in-depth.

That being said their time is limited, and I wish I had dropped it off a couple days before. But thinking back to day I went to see her - I woke-up in panic and confused. I circled something, and asked if this was DID. Very hard move for me...since I normally don't trust people.