Question:
Hello Jane, I don’t think we’ve met. My system is a corporation of about 8 different parts and about 4 fragments. We call ourselves alc because that’s the initials of the name I was given at birth and most of the parts have names that begin with some of those letters. When I say we are a corporation I mean that all the parts know each other and when any decision is made (even what to wear) we consult each other and vote on it and make choices as a group. For the internet we choose the name Butterfly Puzzle System because that’s a name we all like. You asked about what to tell insurance companies and other people. Since I’m on medicaid I can’t answer the questions about insurance. I had insurance once which paid well but it was almost all used up when my ex quit his job and the insurance was discontinued. The only thing I can say from that experience is that I wish I’d had some sort of a case manager who could have helped me use the money the wisest way. Quite a bit of money was spent on psych inpatient treatment and th*rapists who were not knowledgeable about MPD when I could have been treated in facilities and by people who were. I was new at this, however, and didn’t have information on the options and what might be done to help me. Now I don’t have the options even in instances where I know I could get more appropriate treatment. About what to tell insurance companies and professional people I will have to leave that to others. I have always been upfront and honest in these instances and for me that has helped to keep my stress level low. It also allowed me to find out a lot about other people by observing them in how they treat someone like me. They don’t understand multiple level functioning–that someone could be interacting with them and at the same time another portion of one’s being could be in the background observing the interactions the way you would observe the interactions of 2 external people. But back to what to tell these people. I can only say that I have known people who’ve been dx’d with Adult Adjustment Disorder or PTSD for some situations so that they would not have to have their true dx known. I don’t have enough info on when this is a good tool or not. With non-professional people I take a different tack. I make an effort to be as honest as I can because I want to be real with people and keep my life simple. However, I believe in discernment. I.e., I don’t believe in "casting your pearls before swine." If someone is safe and if my telling them about my life will be beneficial for me and them then I do it. If they don’t feel safe then I don’t share a lot about myself. Even tho I want to be honest, upfront, and real I don’t enjoy having people get to know me and if people seem particularly unsafe then I will allow them to believe anything they want about me without trying to correct any incorrect perceptions. I have at times allowed people to believe totally outlandish things about me and even fed that because I knew it would keep them from getting to really know me. I’m not saying this is a plus. I’m sure there are better survival tools and I’m learning them everyday from people who’ve worked hard at learning how to do life. I simply do whatever I need to and try to find ways to be as real as possable. I do have one friend tho who tells people, "I’m crazy. They pay me to be that way," (meaning her disability benefits). I just love it when she says that. My own goal is not to be paid to be crazy. Right now I am on disability. My long term goal is to become a taxpayer. I also want to become integrated but that process is different for me than I originally understood it. I’ve rambled on in ways that met my needs more than yours. Hope some of it helped. Hope someone can give you better answers to your questions. What I want to say mostly tho is that you’re not crazy. You just have a way of coping and dealing with life that is different from a number of other people. People with muscular dystrophy, or who come from Alaska, or who grow up in third world countries, or who are short, or who have heart disease, or who were born into wealthy families all have their own ways of looking at life and dealing with it also. There are people here on ASD who had similar experiences to you and who formulated ways of dealing with life that work in similar ways to the way you do. I hope you find much support here. I know there are many people here who give lovingly of their time, energy, and inspirational resources. I feel privileged to be a part of this group whenever I can be here. alc
Response:
access.att.net, I worry that if my non-t. drs knew about it, they’d think any medical problem or symptom I had was psychosomatic or part of the DID thing and they wouldn’t take me seriously or ever try to help me. Makes me angry to think this. My own little bit of paranioa for the day. 
Hi, Melissa, thanks for your post! My non-t doc is great. HE has some
psych background and is very kind and patient. I am worried that he will hav to send me for a referral someday, and if he doesn’t know about the dx, will not be able to run interference for me , if need be. I also worry about meeting up with those who think this is not real. Sometimes I don’t, but that’ doesn’t count, does it? :) My doc takes all symptoms seriously, sometimes even when I don’t. He’s a good man. Thanks for your thoughts on the matter. Jane – Hide quoted text — Show quoted text – Dear asders, I have been struggling with this huge des*re to tell someone about my dx, and what is happening in my life. I have no idea what I would say, because too much of this is so w*erd to me that I haven’t words for it. I know people think that something is wrong, because I am different, and I am not working, and I keep to myself mostly, which to them is not how I am. What you can help me with, is what you have experienced if you have told anyone. I read about people who don’t even tell their doctor about the dx, and about hiding it from employers and insurance companies. My doc’s nurse is a close neighbour, and my t wants to send him a report this week, the first since the dx. The insurcmpny is ordering a report for disability reasons. How much should these people know? What will happen when they find out the dx? This is really sc*ry. My t will show me the report and I can delete or add to it, but I’m torn between wanting to tell the world and get it over with, and not wanting anyone to know. Feeling like a fre*k Jane Jane, Last year a psy*hia*rist asked me what I would think if I saw him in a mall and he just walked by without saying hello. I said, I’d feel a little hurt. He said there may be another reason for doing such a thing…he said he may not have said hello because I could have been with friends/family. By saying hello, they may have asked me who he was and found out I was seeing a doctor. By not saying hello, he was giving me my privacy. He pointed out the stigm* of our kind of problems and how it is generally not accepted by the average person. I saw another doctor a few years ago that had to fill out some info for the ins.co. He kept it vague, as it was..again..my business. They just kept asking for more and more and more info. It is a difficult situation and it just seems to grow out of control. It frustrates the doctors as well. After this, I privately saw a t’pist for a few months, and paid him cash each visit. At the time, I just wanted some privacy. I don’t know what to tell you, except once it’s out, it’s out. It will be in your records for good. Only time will tell what it will mean for you later on. Perhaps someone else on here…living in same country, and already gone through this process, can give you better advice. The one thing I noticed that disturbs me is that your neighbour (the nurse) could get ahold of this info. It’s one thing to have it get out at work (one n*ghtm*re) another for your family to know (another n*ghtma*e) but to have your neighbours know on top of it could be a very bad situation. They may say the info is conf*dential, but it is human nature to gossip and this person (no matter how decent they may seem), may not be able to resist letting it slip to the wrong ppl. I know that feeling of needing to tell someone. It feels good to get it out. From my experience, try to keep it controlled…tell only those that need to know. As you have mentionned ppl around have noticed, there is no shame in saving face by making light of it…call it exhaustion or slight de*ress*on, something more acceptable and laugh it off in front of them. They’ll back off a bit. But, give them something like this…and their own curiosity gets tr*ggered off…and it grows out of control. I hope I’ve helped. Feel like I’ve had to cram 10 pgs into one. Hope it makes sense. You’re not a frea*, every other human being has a "flaw" if you will, you’re not alone. Jan
Response:
I worry that if my non-t. drs knew about it, they’d think any medical problem or symptom I had was psychosomatic or part of the DID thing and they wouldn’t take me seriously or ever try to help me. Makes me angry to think this. My own little bit of paranioa for the day. – Hide quoted text — Show quoted text – Dear asders, I have been struggling with this huge des*re to tell someone about my dx, and what is happening in my life. I have no idea what I would say, because too much of this is so w*erd to me that I haven’t words for it. I know people think that something is wrong, because I am different, and I am not working, and I keep to myself mostly, which to them is not how I am. What you can help me with, is what you have experienced if you have told anyone. I read about people who don’t even tell their doctor about the dx, and about hiding it from employers and insurance companies. My doc’s nurse is a close neighbour, and my t wants to send him a report this week, the first since the dx. The insurcmpny is ordering a report for disability reasons. How much should these people know? What will happen when they find out the dx? This is really sc*ry. My t will show me the report and I can delete or add to it, but I’m torn between wanting to tell the world and get it over with, and not wanting anyone to know. Feeling like a fre*k Jane Jane, Last year a psy*hia*rist asked me what I would think if I saw him in a mall and he just walked by without saying hello. I said, I’d feel a little hurt. He said there may be another reason for doing such a thing…he said he may not have said hello because I could have been with friends/family. By saying hello, they may have asked me who he was and found out I was seeing a doctor. By not saying hello, he was giving me my privacy. He pointed out the stigm* of our kind of problems and how it is generally not accepted by the average person. I saw another doctor a few years ago that had to fill out some info for the ins.co. He kept it vague, as it was..again..my business. They just kept asking for more and more and more info. It is a difficult situation and it just seems to grow out of control. It frustrates the doctors as well. After this, I privately saw a t’pist for a few months, and paid him cash each visit. At the time, I just wanted some privacy. I don’t know what to tell you, except once it’s out, it’s out. It will be in your records for good. Only time will tell what it will mean for you later on. Perhaps someone else on here…living in same country, and already gone through this process, can give you better advice. The one thing I noticed that disturbs me is that your neighbour (the nurse) could get ahold of this info. It’s one thing to have it get out at work (one n*ghtm*re) another for your family to know (another n*ghtma*e) but to have your neighbours know on top of it could be a very bad situation. They may say the info is conf*dential, but it is human nature to gossip and this person (no matter how decent they may seem), may not be able to resist letting it slip to the wrong ppl. I know that feeling of needing to tell someone. It feels good to get it out. From my experience, try to keep it controlled…tell only those that need to know. As you have mentionned ppl around have noticed, there is no shame in saving face by making light of it…call it exhaustion or slight de*ress*on, something more acceptable and laugh it off in front of them. They’ll back off a bit. But, give them something like this…and their own curiosity gets tr*ggered off…and it grows out of control. I hope I’ve helped. Feel like I’ve had to cram 10 pgs into one. Hope it makes sense. You’re not a frea*, every other human being has a "flaw" if you will, you’re not alone. Jan
Response:
Dear asders, I have been struggling with this huge des*re to tell someone about my dx, and what is happening in my life. I have no idea what I would say, because too much of this is so w*erd to me that I haven’t words for it. I know people think that something is wrong, because I am different, and I am not working, and I keep to myself mostly, which to them is not how I am. What you can help me with, is what you have experienced if you have told anyone. I read about people who don’t even tell their doctor about the dx, and about hiding it from employers and insurance companies. My doc’s nurse is a close neighbour, and my t wants to send him a report this week, the first since the dx. The insurcmpny is ordering a report for disability reasons. How much should these people know? What will happen when they find out the dx? This is really sc*ry. My t will show me the report and I can delete or add to it, but I’m torn between wanting to tell the world and get it over with, and not wanting anyone to know. Feeling like a fre*k Jane
Response:
Thank you to both of you for your replies to my post. I wrote a post to you, Butterfly, and my machine ate it. Then my brain was somewhere else, and I lost a bit of time. Now I can’t find your original post! :( At any rate, i appreciate the ideas you both wrote about. I saw the report that my t wrote, and it was very strange seeing all this in writing. There was nothing there that we hadn’t discussed, but the printed word made it seem so real. Final. Scary! He is concerned that the insurance company will ask for a second opinion, and he and I know that my alter who refuses to speak will show up and there will be a problem. I bounce between thinking that it shouldn’t matter what my "label" is, that I am still the same person, and not wanting anyone to know I’m DID, because they will run shreiking into the sunset never to return. I am afraid, Someonelse, exactly as you say, that my friends will treat me like a speciman, a curiosity, not the way they always have. of course, if I don’t stop hermitting in my house, I won’t have any friends left, so I won’t have that worry. I have decided that I have to trust my neighbour, and take comfort that there is serious mental illness in her family, so perhaps she will have the compassion to not gossip about what comes through my doctor’s mail. So the terrible news is out,to both the insurance people and to my doc. Now I will wait and see if anything awful happens. Thanks for your input to my dilemma. It did make my decision easier, knowing you two were there. Jane – Hide quoted text — Show quoted text – Dear asders, I have been struggling with this huge des*re to tell someone about my dx, and what is happening in my life. I have no idea what I would say, because too much of this is so w*erd to me that I haven’t words for it. I know people think that something is wrong, because I am different, and I am not working, and I keep to myself mostly, which to them is not how I am. What you can help me with, is what you have experienced if you have told anyone. I read about people who don’t even tell their doctor about the dx, and about hiding it from employers and insurance companies. My doc’s nurse is a close neighbour, and my t wants to send him a report this week, the first since the dx. The insurcmpny is ordering a report for disability reasons. How much should these people know? What will happen when they find out the dx? This is really sc*ry. My t will show me the report and I can delete or add to it, but I’m torn between wanting to tell the world and get it over with, and not wanting anyone to know. Feeling like a fre*k Jane I have talked w my T abt this and we decided that it is better not to tell insurance, cuz the company I am with is an HMO and they would insist that my primary care doctor write a letter explaining things to their Mental Health Dept who would then have to evaluate me and probably try and convince me that they have ppl who can work w DID. Since my T has gone through this w other clients she knows that the HMO really *doesnt* have anyone with any expertise which just meant it would waste everyone’s time and maybe hinder progress. Don’t know if that would happen for you but that was the advice from one T. I also knew someone who was a social worker doing utilization review of treatment and once something like that is on a record it can make folks very suspicious of treatment; the UR folks might ask to review more often what is happening in treatment and that kind of thing. Bleah. The non professional ppl I have told I have always felt very weird around afterward; kind of speciman-like. Now I am very very careful who I tell. I liked what ButterflyPuzzleSystem said abt this too. Hope this helpd. Someonelse " I am a poster girl with no poster I am 32 flavors and then some…" Ani Difranco
Response:
- Hide quoted text — Show quoted text – Dear asders, I have been struggling with this huge des*re to tell someone about my dx, and what is happening in my life. I have no idea what I would say, because too much of this is so w*erd to me that I haven’t words for it. I know people think that something is wrong, because I am different, and I am not working, and I keep to myself mostly, which to them is not how I am. What you can help me with, is what you have experienced if you have told anyone. I read about people who don’t even tell their doctor about the dx, and about hiding it from employers and insurance companies. My doc’s nurse is a close neighbour, and my t wants to send him a report this week, the first since the dx. The insurcmpny is ordering a report for disability reasons. How much should these people know? What will happen when they find out the dx? This is really sc*ry. My t will show me the report and I can delete or add to it, but I’m torn between wanting to tell the world and get it over with, and not wanting anyone to know. Feeling like a fre*k Jane
I have talked w my T abt this and we decided that it is better not to tell insurance, cuz the company I am with is an HMO and they would insist that my primary care doctor write a letter explaining things to their Mental Health Dept who would then have to evaluate me and probably try and convince me that they have ppl who can work w DID. Since my T has gone through this w other clients she knows that the HMO really *doesnt* have anyone with any expertise which just meant it would waste everyone’s time and maybe hinder progress. Don’t know if that would happen for you but that was the advice from one T. I also knew someone who was a social worker doing utilization review of treatment and once something like that is on a record it can make folks very suspicious of treatment; the UR folks might ask to review more often what is happening in treatment and that kind of thing. Bleah. The non professional ppl I have told I have always felt very weird around afterward; kind of speciman-like. Now I am very very careful who I tell. I liked what ButterflyPuzzleSystem said abt this too. Hope this helpd. Someonelse " I am a poster girl with no poster I am 32 flavors and then some…" Ani Difranco
Response:
dear jane, I did poorly with my non -T doctors when i told them. They treated us either like we were nuts, or like we were incompetent kids or like we were lieing to get attention. I told my docs because dissociatives have a tendency to minimize symptoms and got the idea to tell from a book called "the flock".It was a bad idea. best everyone, amy
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