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Diagnosed with Complex Trauma and a Dissociative Disorder, Emma and her system share what they learn along the way about complex trauma, dissociation (CPTSD, OSDD, DID, Dissociative Identity Disorder (Multiple Personality), etc.), and mental health. Educational, supportive, inclusive, and inspiring, System Speak documents her healing journey through the best and worst of life in recovery through insights, conversations, and collaborations.
Over: Welcome to the System Speak Podcast, a podcast about Dissociative Identity Disorder. If you are new to the podcast, we recommend starting at the beginning episodes and listen in order to hear our story and what we have learned through this endeavor. Current episodes may be more applicable to long time listeners and are likely to contain more advanced topics, emotional or other triggering content, and or reference earlier episodes that provide more context to what
Speaker 2:we are currently learning and experiencing. As always, please care
Speaker 1:for yourself during and after listening to the podcast. Thank you. Hello. Hi. How are you?
Speaker 3:I'm doing good. How are you?
Speaker 1:I'm good. Thank you for talking to us today. I was glad to meet you in Florida, and so it's fun to talk to a system that I've actually met.
Speaker 3:Yeah. No. I'm really excited. It was really awesome to see you. I'm really glad that you came.
Speaker 1:It was, a pretty powerful experience for the conference, but I know that it took us a while to actually connect because we were so scared. We had
Speaker 3:so much No. I understand. Like, my first conference, I was pretty terrified the whole time. But, I'm glad that you guys came anyway. We were able to meet.
Speaker 1:Well, go ahead just for the sake of the podcast and tell us about your system or yourself or whatever you want to do as far as an introduction.
Speaker 3:Sure. Hello. So I am Scarlett, the host of the Labyrinth system. We are a system of about 14, who has been diagnosed for about five years now.
Speaker 1:What was your process of getting a diagnosis?
Speaker 3:So, for us, we were identified as having DID at 15, which we were lucky to be identified so early. And then we were given a more official diagnosis at 16, I believe. And that was through the test called the SCID D. And we were given that test because our insurance wanted us to have a more official diagnosis in order to give us the treatment that we needed.
Speaker 1:Did that make a difference?
Speaker 3:For us, I mean, it was it made a difference. It was validating for sure, because the SCID D was a test that was given to, they they did quite a few studies on it. One of the studies they did, it was given to people with schizophrenia, people who were pretending to have DID, and people who had DID. It was shown to just diagnose the people with DID. So it was definitely validating for us.
Speaker 3:And it was all, like I said, it really helped us get the treatment that we needed with our insurance. And it was a very long process. It was about a six hour interview. So it was it was pretty exhausting. But like I said, it was definitely worth it.
Speaker 1:Oh, wow. Six hours. That's intense. So are you still in treatment now?
Speaker 3:Yes, we are. We actually are almost done with a intensive outpatient program that we've been doing. It was three days a week from nine to twelve and it was very, very helpful. And right now we're taking medication and we are looking for a trauma therapist in the area. It's our insurance.
Speaker 3:We've been having a little trouble finding a trauma therapist that's taking our insurance that works with people with DID that is taking new clients. But we're hoping to find somebody very soon.
Speaker 1:Oh, I know that that's a hard thing. We have to drive four hours to get to our therapist. So Yeah. It's It's brutal.
Speaker 3:It's definitely it's definitely a common experience for people with DID, which is really unfortunate. There definitely should be more resources and hopefully in the future as people understand DID better there will be.
Speaker 1:I hope so. How how would you explain without being I don't want to be overly intrusive, but without without over disclosing, how would you explain to listeners the difference between outpatient, intensive outpatient, and inpatient?
Speaker 3:So intensive outpatient is, a program that you go to that you can go home after you're done. There's actually three levels. There's inpatient, which is where you are hospitalized and you stay there at the hospital and you have a bed and you aren't able to leave. And then there is partial hospitalization and that program. Again, it depends on the facility that you go to, but for our facility, it was five days a week from nine to three and we were doing that.
Speaker 3:And then afterwards, you get to go home and on the weekends, you don't have to go in. And then intensive outpatient is the three days a week program. And basically the difference is, it's a lot more intensive therapy. The whole time you're there, you're doing therapy, like group therapy, versus inpatient, which is more about just the stabilization aspect. And you get to go home when you're not there doing the work.
Speaker 1:So you've been through the whole process?
Speaker 3:Yes, yeah, we were actually this past year starting in, I believe November, we were hospitalized and gone inpatient about five times. So we've been having a lot going on lately as far as our mental health. But now, thanks to a test called the GeneSight test, which tests your genetics to see which medications will work best for you. We are finally on medications that work for us, which is really amazing.
Speaker 1:That is amazing. That's a bit of a breakthrough for you all.
Speaker 3:Yeah, no, it's a huge breakthrough. We found out through this test we're very medication resistant. There's only two antidepressants out of the dozens that exist that actually work for us. We've been on medication since we were seven. So it's definitely, it's a huge, huge breakthrough.
Speaker 3:We're big advocates about the GeneSight test and teaching people about medication resistance now.
Speaker 1:That's amazing. I'll put a link in the blog to that as well so people can see more of what you're talking about.
Speaker 3:Yeah. Definitely.
Speaker 1:So how was DID presented to you? I don't mean internally, but from when you were getting diagnosed, how did they say this is what we think is going on and what it's called and what it means?
Speaker 3:So after our first ever hospitalization when we were 15, we started seeing a new therapist. And I believe within the first few sessions, she suspected that we had DID. But she didn't really present it to us as possibly having DID until session like eight or nine. And she asked she asked questions like, you know, how many people do you have inside of you and things like that. And it was the first time that we had gotten any kind of validation.
Speaker 3:And from a mental health level that we had dissociative identity disorder or something going on mental health wise. And so it was it was really exciting. And then she gave us some information on DID, as well as like, talking to our mom, and giving our mom some information on DID. And she, like I said, she was very she had seen several people with DID before. So she was very understanding of what DID looked like and what it was.
Speaker 3:And she it was definitely, at first, very validating for us. And then our host at the time went into a bit of a denial for a while, which made things I think you're not gonna find somebody with DID who hasn't really gone into a denial at some point. Right. But, yeah. Yeah.
Speaker 3:She went into a denial for a while, but eventually we were able to get things situated and start actual treatment for our DID.
Speaker 1:How did you get from learning about DID to starting this internet sensation?
Speaker 3:So I think for us it was definitely the experiences we had, even with like, especially with mental health professionals that encouraged us to want to educate people. Like, for example, there was one thing that really stuck out with us. After we are one of our suicide attempts, we were in the emergency room in the hospital. And the head psych doctor that was on call came into the room and he said, I see that you're diagnosed with DID. Is that when you forget who you are?
Speaker 3:Or is that when you pretend to be other people? And that, yeah, that really, especially because we were in such a vulnerable place at the time, that really stuck in our heads. And then we've had several other experiences like that and experiences like we had a friend who would continuously call alters characters and things like that. So just these experiences, we didn't want other people in the future to have to experience those types of experiences. If we could do anything to kind of help a little bit to raise the awareness and understanding surrounding DID and what it's like to live with DID, that's what we wanted to do.
Speaker 3:So that's kind of what led us to create our YouTube channel and do the advocacy that we do.
Speaker 1:It's really amazing. Did you have any idea when you started doing that, that so many people would start doing channels or come out of the woodwork like they have?
Speaker 3:No, actually, I'm so I'm really pleasantly surprised that that happened. Like, we when we started our channel, the only other person that was really doing DID advocacy was Jess from Multiplicity and Me, like on YouTube, at least, I mean. And so, we had no idea that people would start creating their own channels and then the Entropy system created a channel and then Jeremy and alternate perspective, and then people just continuously created channels and we're doing DID videos and educational videos. I think it's so important because DID presents so differently from person to person to have the amount of channels out there that are out there now. And I'm always really excited when somebody says they're going to start a channel.
Speaker 3:I think it's going a long way as far as normalizing DID and helping people understand DID.
Speaker 1:It's a powerful thing. It's a powerful thing that you all have done.
Speaker 3:Yeah, we are definitely and even now we have people coming up and being like, really want to start a channel. We want to start a YouTube channel and educate people. I think it's very empowering for the community as a whole. One of our main goals is to help people who in the future who get a DID diagnosis feel less alone and less afraid. And I think the more videos and the more posts and the more Instagram accounts that are out there, there's more of a chance for people who are just diagnosed to find them and see that they aren't alone.
Speaker 1:How do you maintain this positive outlook and the perspective that the community should be supporting each other instead of getting caught up in drama or politics of it all?
Speaker 3:So we've been in the community for since we've been diagnosed, so five, almost six years, and we've kind of done the drama thing, I guess. We just were tired of it. And we want to be able to support people and help anybody who's hurting or confused and help them feel a sense of community. I think, like we've already gone through trauma and pain and things like that. And I don't think that it's necessary for us to continue to hurt each other, especially because we all know what it feels like to be hurt.
Speaker 3:And yeah. So we've we've kind of we've done the drama thing, and we've decided we want to just focus on helping people and educating people and making people feel less alone.
Speaker 1:How do you respond to people who are unkind or or people who are not supportive or who choose to continue to misunderstand when you've been so vulnerable and open?
Speaker 3:It used to really bother us when we would get comments and things like that, know, calling us fake, things like just calling us crazy, things like that. But recently, we've kind of started saving all the there's so many more good comments than bad comments. And we recently started just or I guess a couple years ago, started saving all these good comments and all the nice things that people send to us and like somebody sent us their Christmas card which was amazing. And it was it was really cool and we fed people send us like gifts. And people do drawings of people in our system.
Speaker 3:And like that level of like kindness and compassion towards us just really blows away any and all of the the bad comments that we get, honestly.
Speaker 1:It's a powerful thing. That has surprised me in the experience with the podcast. The letters and the emails and the things that come are so special and so powerful. Not just because not because people are saying, oh, you did a good job, but because there's connection with actual people who are in the journey of healing with you. And there's something about the connection of the community and support that way that's really powerful.
Speaker 1:And when you have that connection of or that collection of the kind things people have say have said or the things that they have sent, and how it's changing their lives. There's something about that that gives courage somehow just to keep going in the everyday life, much less on trying to advocate or educate against such criticism. Oh, I
Speaker 3:I totally agree. I think that some of the most powerful things that people have sent us and commented are people who say, you know, you've helped me a lot. You've made me feel less alone. You've helped me understand myself and my DID and my alters, and you've helped my system be able to communicate better and things like that. The amount of people that say that we help them, it's it's overwhelming, but in a in a positive way, I would say.
Speaker 1:What are what are some of the best things that have come out of your experience on YouTube in a in a good way as far as educating and advocating?
Speaker 3:I think well, some of the best things is actually, like, we have our friends who would watch the videos and they would get a better understanding of DID through our videos. And even we've had other people we've met with DID who are now friends that actually live in the area. Because Orlando is a pretty big place for people with DID. I've met quite a few other people with DID here in Orlando. Think that that has a lot to do with an infinite mind.
Speaker 3:But yeah, we've had like friends who didn't really understand our D watch our videos and then come back and use correct terminology and use like, understanding. I think that that makes a big difference because if our friends are doing that, I can assume that other people's friends are doing that as well. And our hope is to help people understand DID better. One of one thing that we really like our goal is that somebody can come out as DID to their friends. And their friends are just like, oh, okay, cool.
Speaker 3:I'd love to meet your alters, just understand it. And somebody with DID doesn't have to defend themselves or completely explain everything. And that's a goal that we have for the future. And I think we there's a chance that we could get there, you know, with the amount of people doing advocacy and stuff.
Speaker 1:That's powerful. What have you learned that you didn't know before?
Speaker 3:I definitely a lot of times watching other people's channels, I have learned that I'm not alone in a lot of things I experienced. Like, for example, we have quite a few non human alters. And when we were first diagnosed, we weren't sure if that was a normal thing to have. But watching other people's videos about nonhuman alters and also having nonhuman alters has definitely helped us feel less anxious and less nervous about ourselves having so many non human alters in our system.
Speaker 1:Again, there's that sense of connection that comes from community.
Speaker 3:Yes, I totally agree. That's why the conference, the Healing Together conference is one of our favorite things. Because it's every year you go, it's like so powerful to have such a community gathered in one place and have people being in I like saying, like, being in the majority versus the minority. It's a really powerful thing.
Speaker 1:That was a special experience. I saw people learning there. I saw people taking notes and things. I saw people asking hard questions. I saw littles playing.
Speaker 1:I saw people being safe when they needed some self care, like a woman literally taking a time out on the floor and just everything and it not being a big deal to anyone, everyone just being respectful and there were so many good things in that way as far as the experience of the conference.
Speaker 3:Yeah, I totally agree. It's very nice. Like at one point, we we during the conference was around the time that we were struggling a lot, and dealing with our hospitalizations. And at one point, we just kind of had to go into a corner and just breathe and we were kind of crying and somebody came up to us and asked if they could sit with us and just kind of be there for us. And that was really powerful and, definitely made us feel less embarrassed, less alone, and, that somebody cared about us.
Speaker 3:And it was really it was really powerful.
Speaker 1:That's special. Even in that setting to just not be alone.
Speaker 3:Yeah, for sure. That's why we I mean, and it was our I believe it was our fourth conference, which is is really exciting. We actually were able to go our first year when we were 17, because Jamie had made an exception, because we were gonna we were about to turn 18. And it was it was one of our first times, like we had only met, I think, one other person with DID, the first time that we went to the conference in person, we had only met one other person with DID and it was amazing to meet so many other people that were understanding and knew in a lot of ways exactly what we were experiencing going through.
Speaker 1:What else do you think people still need to know about DID or about advocating for DID?
Speaker 3:One thing I think is really important to note is that for people who are hoping to be DID advocates and creating channels and everything like that, as far as working with the media, you know, especially like the media, like mainstream media, like we did a Cosmo article a while back, it's really important to have boundaries and set boundaries and make sure that the people that you are working with are willing to follow a certain amount of boundaries. Like, for example, we have a set list of boundaries saying things like, we don't want our words misconstrued. We don't want we our goal is to educate, not sensationalize. We will not talk about our trauma other than very vague details, or like very vague on what our trauma was, and things like that. And so having those guidelines is a really good way to make sure that you're protected and that your words aren't going to be misconstrued.
Speaker 3:Because working with the media, it can be hard, especially because a lot of people with DID have trouble saying no. And a lot of times, sometimes people in the media can be pushy. So I think it's really important to not sign any contracts with media as unless you're positive, then you've looked through it and even have, like, somebody who knows about law look through it. And make sure that you know exactly what their goal is in creating this article. Just if you get even if you get a bad vibe and you don't feel like it's gonna be a good fit, there's no shame in saying no.
Speaker 3:Because the last thing that we need is more sensationalization and especially at the expense of somebody who's just trying to educate and help people understand better.
Speaker 1:That's so true and really, really good advice.
Speaker 3:Yeah. I we're actually to do a video on that as well as present maybe at the next healing together conference on working with the media as somebody with DID because we want to help people who want to educate better understand how to set boundaries with the media and things like that.
Speaker 1:So you're going to be there again next year?
Speaker 3:Yes, yeah, we will definitely be there next year. Since we live in Orlando, it makes it a lot easier for us to be able to go. So we're going to be there next year. And then hopefully with any time in the future, we're going to be there. That's what we want to be able to do is continuously go because it's been such a good and helpful experience for us.
Speaker 1:I'm so glad. Oh thank you for talking to me. Is there anything else you wanted to share or tell us about DID?
Speaker 3:I just want to say that to any systems out there who are still learning about themselves and trying to understand their system and things like that, that you're not alone. And there is a community out here that wants to support you and wants to be there for you. And that I hope you continue to learn things about yourself and your system and find ways that you and your system can work together in life and work as a team.
Speaker 1:Thank you so much.
Speaker 3:Yeah, thank you so much. I'm so glad we were finally able to do this. Thank you. Yeah. Thank you.
Speaker 1:Thank you for listening. Your support of the podcast, the workbooks, and the community means so much to us as we try to create something together that's never been done before. Not like this. Connection brings healing, and you can join us on the community at www.systemspeakcommunity.com. We'll see you there.