Transcript: Episode 77
77. Guest: The Labyrinth System
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[Short piano piece is played, lasting about 20 seconds]
***Interview Begins***
Interviewer: Bold Font
Interviewee: Standard Font
Hello!
Hi!
How are you?
I’m doing good. How are you?
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. [Laughs]
Yeah. I’m really excited. It was really awesome to see you. I’m really glad that you came.
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. [Laughs] We had so much anxiety.
Oh, I understand. Like my first conference, I was pretty terrified the whole time, but I’m glad that you guys came anyway, and we were able to meet.
Well, go ahead 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.
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.
What was your process of getting a diagnosis?
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.
Did that make a difference?
For us, it made a difference -- it was validating, for sure, because the SCID-D was a test that was given to -- 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, and it was shown to just diagnose the people with DID. So, it was definitely validating for us. And it was, 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 pretty exhausting. But like I said, it was definitely worth it.
Oh, wow. Six hours. That’s intense. So, are you still in treatment now?
Yes, we are. We actually are almost done with an intensive outpatient program that we’ve been doing. It was three days a week, from 9:00 to 12:00. It was very, very helpful. And right now we’re taking medication, and we are looking for a trauma therapist in the area that matches our insurance. We’re 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.
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.
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.
I hope so. How would you explain -- without being -- I don’t want to be overly intrusive. But without over disclosing, how would you explain to listeners the difference between outpatient, and intensive outpatient, and inpatient?
So, intensive outpatient is a program that you go to, that you can go home after you're done. So, 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’s 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 9:00 to 3:00, and we were doing that. 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.
So, you’ve been through the whole process?
Yes. yeah, we were actually -- this past year, starting in, I believe, November, we were hospitalized, and got 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.
That is amazing. That’s a bit of a breakthrough for you all.
Yeah, no, it’s a huge breakthrough. We are -- we found out through this test, we are 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. We’re big advocates about the GeneSight test, and teaching people about medication resistance now.
That’s amazing. I’ll put a link in the blog to that, so people can see more about what you’re talking about.
Yeah, definitely.
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?”
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 eight or nine. And she asked questions like, “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 from a mental health level, that we had Dissociative Identity Disorder, or something going on mental health wise. And so it was really exciting.
And then she gave us some information on DID, as well as 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. 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 awhile, which made things -- I think, you’re not going to find someone with DID who hasn’t really gone into a denial, at some point.
Right!
But yeah, she went into a denial for awhile, but eventually we were able to get things situated, and start actual treatment for our DID.
How did you get from learning about DID to starting this internet sensation? [Laughs]
[Laughs] So, I think, for us, it was definitely the experiences we had, even with, especially with mental health professionals, that encouraged us to want to educate people. For example, there was one thing that really stuck out with us. After 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 your diagnosed with DID. Is that when you forget who you are? Or is that when you pretend to be other people?”
Woah.
And that -- yeah. That really [laughs] -- 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 -- experiences like we had a friend who would continuously call Alters, “characters”, and things like that. And so, just these experiences, we didn’t want other people in the future to have to experience that - those types of experiences. And 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. So, that’s kind of what led us to create our YouTube channel, and do the advocacy that we do.
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?
No. Actually, I’m really pleasantly surprised that that happened. When we started our channel, the only other person that was really doing DID advocacy, was Jess, from Multiplicity and Me, 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, an Alternate Perspective, and people just continuously created channels, and were doing DID videos, and educational videos. And 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, I’m always really excited when somebody says they’re going to start a channel. I think it’s gone a long ways, as far as normalizing DID, and helping people understand DId.
It’s a powerful thing. It’s a powerful thing that you all have done.
Yeah, we are definitely -- and even now, we have people coming up and being like, “We really want to start a channel. We want to start a YouTube channel, and educate people.” And I think it’s very empowering for the community as a whole. One of our main goals is to help people, 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.
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?
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.
[Laughs]
[Laughs] And we just -- we’re 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 we’ve already gone through trauma, and pain, and things like that. 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. So yeah, we’ve done the drama thing, and we’ve decided we just want to focus on helping people, and educating people, and making people feel less alone.
How do you respond to people who are unkind, or people who are not supportive, or who choose to continue to misunderstand when you’ve been so vulnerable and open?
It used to really bother us when we would get comments, and things like that. You know, calling us fake, things like calling us crazy - things like that. But recently, we’ve kind of started saving -- there’s so many more good comments, than bad comments. And we’ve recently started -- or I guess a couple years ago, started saving all these good comments, and all the nice things that people send to us. Like somebody sent us their Christmas card, which was amazing. And it was really cool. And we’ve had people send us gifts. And people do drawings of people in our system. That level of kindness, and compassion towards us just really blows us away, than all of the bad comments that we get, honestly.
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 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. And when you have that connection -- or that collection of the kind things people 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 totally agree. I think that some of the most powerful things that people have sent us, and commented, are people who say, “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 overwhelming, but in a positive way, I would say.
What are some of the best things that have come out of your experience on YouTube, in a good way, as far as educating and advocating?
I think -- well, some of the best things is actually, 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, who have DID, who are now our friends, who 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. I think that that has a lot to do with an Infinite Mind.
But yeah, we’ve had friends who didn’t really understand our DID, watch our videos, and then come back, and use correct terminology, and use understanding. I think that that makes a big difference. Because if our friends are doing that, I can assume that other peoples’ friends are doing that as well. Our hope is to help people understand DID better.
One thing that we really -- our goal is that somebody can come out as DID to their friends, and their friends are just like, “Oh, okay. Cool. I’d love to meet your Alters.” Just understand it. And somebody with DID doesn’t have to defend themselves, or completely explain everything. That’s a goal that we have for the future. And I think there’s a chance that we could get there with the amount of people doing advocacy and stuff.
That’s powerful. What have you learned that you didn’t know before?
I definitely… a lot of times -- watching other peoples’ channels, have learned that I’m not alone in a lot of the things that I experience. For example, we have quite a few nonhuman Alters. And when we were first diagnosed, we weren’t sure if that was a normal thing to have. But watching other peoples’ videos about nonhuman Alters, and also having nonhuman Alters has definitely helped us feel less anxious, and less nervous about ourselves having so many nonhuman Alters in our system.
That’s, again, there’s that sense of connection that comes from community.
Yes, I totally agree. That’s why the conference, The Healing Together conference, is one of our favorite things. Because every year you go, it’s so powerful to have such a community gathered in one place, and have people being -- I like saying, being in the majority versus the minority. It’s a really powerful thing.
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. I saw people being safe when they needed self care - like a woman literally taking a timeout 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.
Yeah, I totally agree. It’s very nice. At one point, 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. And it was really powerful.
That’s special. Even in that setting, to just not be alone.
Yeah, for sure. That’s why -- I mean, I believe it was our fourth conference, which is really exciting. We, actually, were able to go our first year, when we were 17, because Jamie had made an exception, because were about to turn 18. And it was one of our first times -- we had only met one other person with DID the first time 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, and going through.
What else do you think people still need to know about DID, or about advocating for DID?
One thing, I think, is really important to know 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, especially the mainstream media -- 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. For example, we have a set list of boundaries saying things like we don’t want our words misconstrued. Our goal is to educate, not sensationalize. We will not talk about our trauma, other than very vague details, 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. Because working with the media, it can be hard, especially because a lot of people with DID have trouble saying “No.” And sometimes the people in the media can be pushy. So, I think it’s really important to not sign any contracts with media, unless you’re positive, and you’ve looked through it, and even have somebody who knows the law look through it. And make sure that you know exactly what their goal is in creating these articles. And just, even if you get a bad vibe, and you don’t feel like it’s going to be a good fit, there’s no shame in saying “No.” Because the last thing that we need is more sensationalization, and especially at the expense of somebody who’s trying to educate and trying to help people understand better.
That’s so true, and really, really good advice.
Yeah. 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.
So, you’re going to be there again next year?
Yeah. 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 to continuously go, because it’s been such a good, and helpful experience for us.
I’m so glad. Oh, thank you for talking to me. Is there anything else you wanted to share, or tell us about DID?
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.
Thank you so much!
Yeah, thank you so much! I’m so glad we were finally able to do this.
[Laughs] Thank you!
Yeah, thank you.
[Break]
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