Latest / System Speak: Complex Trauma and Dissociation / Guest: Beauty After Bruises

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Guest: Beauty After Bruises · System Speak: Complex Trauma and Dissociation

0:00
Speaker 1: Hello, and and thank you, actually. I'm just super excited to be here with with miss Emma, and this is Anne with Beauty After Bruises. And our organization is situated in a little town, teeny tiny town in Pennsylvania. That's where most of our board members and and collective support persons are geographically located, or at least when we first started, they were that branching out quite a bit. And my role here is multifaceted in that I'm I'm certainly a cofounder, but also work on the survivor outreach side of things as the liaison between the survivors and the grant committee, between survivors of trauma and their therapists, or who it is that they're trying to become at working with as far as their therapist or an inpatient facility.
0:46
So I'm I'm kind of the person in the middle who's just really helping to guide that person who needs assistance at finding whatever it is that's going to help them in their journey. And that's that's a little bit about who I am in my very specific role here at Beauty After Bruises. So thank you for having me.
1:03
Speaker 2: And hi. My name is Lexi. I am also someone with a bit of a role at Beauty After Bruises. So I am also a cofounder, but my particular job in the areas that that I have some skills, so to speak, is to head up the side of trauma education, a lot of research, and providing tools for survivors from coping skills and articles and kind of the the research and data side of things, but also particularly where it collides with lived experience. And I have my own personal experience in this field as a survivor as well as a teacher.
1:48
So I tend to try to focus on things for, where those two things meet in the middle as well as having personal experience with kind of navigating the system in terms of treatment, in terms of, inpatient, in terms of therapy, all the different modalities and things like that. So kind of, wedding the two and that's kind of most of what I do over there in addition to a few other things, particularly social media and website and all those kind of things too.
2:17
Speaker 3: Thank you so much for joining us today. Share with me what you can about or share with me what beauty after bruises is, what you're doing, and what how did it get started? What's your story?
2:32
Speaker 1: That is a good question. It it really kind of came together quite accidentally. There there was no original intention to have a charity. And and this is Anne, and and we had a a family member who is I I don't wanna identify the family member, but we we had a family member, who really struggled for a long time with multiple different things throughout life that that just that to us as a family were really hard to understand. We we found lots of brick walls, that we ran into everywhere that this this particular family member sort of went for help.
3:08
And in a very, very short version of a very long story, many years down the road of bouncing from therapist to therapist and bouncing from program to program, we eventually had someone say, well, your loved one has what would they were calling complex PTSD. And then that eventually evolved into your loved one has dissociative identity disorder. And it was the kind of experience where there were just more there were more questions than there were ever answers. And and there was more frustration than there was ever happiness and success. Most of the therapists had and and that's not to belittle them, but they really had no idea what they were doing.
3:48
And, admittedly, they would say, you know, this is new to me. I don't know what I'm doing. This is such a rare experience. And and it got to where we kind of all got tired of hearing about how rare it was and just wanted somebody to say, I get it. I can help.
4:00
And it took a long time before that all all came together where someone was able to help this family member and and really get them back on their feet and and start allowing them to live what we thought might look like a normal life at some point. And along with that, there was also the frustration of trying to find financial support, trying to convince insurance companies to pay, fighting every imaginable thing you can have in front of you, needing to reach out to congresspersons and senators and just really argue from places you never thought you would have. It became a full time job, not just for the survivor. Obviously, they were living a full time job of surviving, but we were also doing our own full time job of trying to figure out how to keep that keep them safe in in regard to making sure that everything they needed was provided. And over the course of time, things got to be much more reasonably okay.
4:56
And then it came time for that one last inpatient stay. And and we had really just as a family, I mean, it it it notes a a large family. So, you know, everybody was combining together, working together, and we just ran out of ways to make it happen. There was one more time when the insurance company was saying no. There was one more time where the senator was fighting.
5:15
There was one more time where we didn't have the funds and we were reaching out to everyone. And, you know, the more everything was mortgaged already. There was nothing else to tap into. And a friend said, you know, you as this is a there are lot of us as friends who are business people. Why don't we do some fundraising?
5:30
Why don't we see what we can do? And, ultimately, that turned out to be the best thing we we had done in as far as fundraising goes to get those funds together and meet the needs of our loved one. And many months later, it kind of occurred to all of us, those of us who pitched in and made it happen, so to speak. And and when I say those of us, I'm talking about a collective number of individuals within a community, and and kind of talking just one day about how hard it was and how unfair it was that someone who was desperately searching for help and could not find it no matter how hard they tried even when they had a team of people behind them. And then and the idea of kind of birth itself, you know, how how unfair is this, and someone needs to step in.
6:10
Someone needs to do something. And we thought, well, why not do a charity? Why not make it possible? And as easy as that sounds at first, go, okay. Well, we can raise funds.
6:19
We can we can do this. But then we realized that we, as the fundraisers and as the money side of things, we don't have any lived experience with this. So we really couldn't we didn't have that additional component of connecting with the community. And when I say the community, I mean the community of survivors. And we really didn't even have a a great way to connect with therapists because we didn't understand what they were going through.
6:40
So we we had the fundraising side down, but what we didn't have was the more important component was how to how to really work with the survivors. And lo and behold, we kind of we got to know Lexi, and we realized that she is she was the person we needed to be that that cofounder and really get things off the ground and be the person that could reach out to our survivors and educate us as the the fundraising side of the board members on, tell us what this is like. Talk us through this because we don't know, and we don't wanna we don't wanna do it wrong. This is too and we certainly don't wanna be dismissive like everyone was when when our family member was going through this. So talk us through the right things.
7:19
And it's been a tremendous and wonderful journey and and a tremendous and wonderful learning curve as well. So that's kind of how we got started. And I don't know if you wanna throw something in there
7:30
Speaker 2: or you Yeah. Okay. Yeah. From my side of things, I kinda came at this from a couple different angles. So I knew that folks in the area were really interested in kind of creating a larger initiative.
7:45
I kinda heard things here and there. And, of course, this is something that I'm really passionate about. It's something that I have a ton of lived experience with and had ran into all so many of the obstacles that they were so badly hoping to mitigate for other people. And I had experience of seeing plenty of people in treatment and people I cared about run into these same things. I had run into all of these kind of things before.
8:10
So I already, just from a emotional standpoint, really wanted to help make a difference here. And even I didn't really necessarily know how to do that. I have the education, the knowledge, and the experience, but I don't have any of the rest of this either. So it was kind of like a perfect marriage of of both skill sets. But also so, like, initially, I was just like, oh, yeah.
8:32
I'm sure. I'll definitely help out. I'll I'll help make sure you get some verbiage correct. So I'm I'm pretty particular about a lot of these things. I I tend to not well, I tend to be pretty picky with the way that people are particularly educated around DID, but all trauma.
8:49
Like, I'm I'm very particular about things like that. And so there is a a big personal, urge in me to make sure that this is done correctly, and and thoughtfully, but particularly with a lot of care. And so already from that point of view, I knew I at least wanted
9:06
Speaker 1: to offer that much. And then it
9:08
Speaker 2: didn't take very long at all once I kind of put my foot in that door. I'm like, oh, no. I wanna do way, way, way, way more than this, and I wanna get involved in this and start start from the beginning and really build this into to something bigger and something more important. I think also I had had the experience of too often, you know, organizations that really focus on trauma, but particularly if they even try to veer into dissociation, they tend to be one of two things. They tend to either be folks without any lived experience who just really don't know quite necessarily what they're talking about.
9:42
They might have taken some, like, very generic things from maybe the DSM or some other article they read and then just kind of repeat them and don't really have, like, a fundamental understanding of it. So then when people do inquire or ask questions or survivors interact, there's a there's a big gap there. There's a big gap in understanding, and that's already kind of a hard thing from a survivor point of view when you're reaching out for help and the person on the other end doesn't really understand what you're communicating or what you need or how hard this is. Or it's the opposite where it's incredibly survivor led, and even that kinda has one of two two experiences. It tends to either be one of the major survivor success stories where someone with this has just somehow found this perfect, mixture of ways to be well and be competent and get everything together and then just, like, go tackle the world.
10:35
And that is an incredible thing and is incredibly possible, but it is also not common. So it can kind of be a bit alienating sometimes and and and the the charity initiative or the hope getting side of it can sometimes feel a bit too unrealistic from a survivor point of view. We're like, well, that's great that you could do that, but most of us can't kind of thing and can sometimes be alienating. Or it's also just missing something. There's something there's something missing.
11:01
They've got a lot of the heart and a lot of the education, a lot of the outreach, but it doesn't really go much further than awareness. So, we had the perfect, wedding of worlds here, and then it became very important and, like, really important for my my healing on my own just as, like, kind of a a final nice closing piece there to kind of really give back and take all of the things that I have learned everywhere, both from personal experience, but also academically, and fill another void, both from the survivor side of just really understanding what it's like to be where you're at and to be in those different crisis points or just to be looking for resources and not know what to do and not have access to treatment and how to just emotionally navigate that, as well as help our, organization, understand how to interact with survivors, think about them, understand them if somebody reaches out either in crisis or just in a great place in their life. What's the most thoughtful and caring and loving way to interact and to also not make things worse or accidentally trigger all these things.
12:09
Like, it's just a really delicate thing to do and requires a really unique kind of education that you can't get from a book. And so to kind of be valuable there, but then also interact with folks myself and, help fill some of those those gaps that they need. And, yeah, I don't know. It's a it's a wide expansive thing, but it really, was a lot of things that I wanted to offer and had had already been kind of offering in my own way in, communities of survivors anyway. It's kind of a role I naturally tended to take on anyway, but now I had a a really functional way to channel that all in and make a difference for way more people, in a really concentrated way.
12:51
So it kind of all came together in that way.
12:54
Speaker 3: I think you have both spoken to something that is so often, too often, too often a shared experience among survivors and in the DID community where we struggle so much to find out what is going on. We struggle to find the right treatment for what is going on. We struggle once we have a name for it and what is dissociation, what is trauma, what does this mean, what you know, all of that piece of things and then trying to fund the care to stay alive. And even that can be such a triggering thing because when we talk about trauma, we're talking about not something that is wrong with us, which is how it can feel, but what was done to us or what happened to us and and that that those experiences of trauma. And so it's like one more way sometimes that we're having to clean up the mess again and to get well we have to come up with all these resources or find where to go and how to pay for it and what resources do we have or not have.
14:05
And navigating all of that can be so overwhelming. And I like, I I I don't know I seriously don't know a survivor who hasn't struggled with that.
14:16
Speaker 2: And that that's kind
14:17
Speaker 1: of one of the biggest emails that we receive or whether it's an email or reach out through Facebook or something else is and it's very often a very simple statement. You know? This is my name. I just discovered I have a fill in the blank complex PTSD, OSDD, DID, and and I don't know what to do. I don't know how to move forward, and I'm not sure I'm gonna be okay.
14:40
It's just a very simple statement, but it's it's terrifying. And and and you know just in reading it that that person is going through something extreme right now because they really don't know. And I know one time, you know, not not too long ago, Lexi was actually telling me about what we were calling the trifecta of trauma, and it really had to do with that. And we hear that all the time that it's, you already bad enough. I've experienced it.
15:03
Now I have to figure out what to do with it, and then I have to figure out how to pay for it. And it's just trauma on top of trauma on top of trauma, and none of it fair. None of it okay. But if you wanna survive, you have to do it. You have to dig in.
15:18
And sometimes just knowing that there is someone out there, no matter how far away they are, even if they're on the other end of a screen, just knowing that someone out is out there and and says, okay. Here's where we're going to start, and then we're gonna move forward one step at a time. We're gonna take baby steps till we get there, but you will run. You will. It's just gonna take some time.
15:36
Speaker 3: I think that's so powerful. And the story that you shared was so special about how the community sort of wrapped around that family member that you were talking about. And and I don't want to pry into that at all just out of respect, but but that vision of regardless of what all of those challenges were like for you in real life personally, that story of wrapping yourselves around that person and being present in safety. Like, it just speaks of attunement and of relational healing and of strengthening through community and all of the ways that are so, so powerful. That's just such a beautiful story.
16:19
Speaker 1: It wasn't like everybody was on board. There were certainly within our own family. Were, you know, mean, a family's got extended family that are much larger than we we often sometimes think. And it's not like everybody was bored. There were some who would have probably just assumed never spoken of it again.
16:37
I think that might even be putting it mildly. There were people within the community that if you mentioned even something minor, minor meaning, you know, how we might be experiencing an eating disorder. They would kind of look at you like, oh my goodness. You must have the plague. You know?
16:51
It's it's like you told them you had COVID. They wanted to run the other direction. Now keep in mind, this is regardless, it may be twenty years ago, but but that hasn't changed a whole heck of a lot since then. So there were certainly plenty who who kinda hit their tails and turned and and and ran the other direction. But there were there were there were at least enough people who came together and said, no.
17:12
This is important, and I I don't understand it. I don't need to. I see that that there's somebody needs help. And, ultimately, part of growing in your own survivorship is to understand that sometimes the people we thought we needed to count on or we thought we could count on are the people we can't count on at all. And we have to start kind of anew and learn how to find better people and how to align with better people in our lives.
17:38
And that that in itself is a is a big step. And sometimes, you you just you do have to be slightly brave enough to reach out to someone and say, I need help and take it one step at a time. Again, learning to allow that to to begin to grow, that trust to begin to grow. It should not be given simply and and immediately, but it it does take time. So, yes, it it was it was beautiful to know that the community the parts of the community that came together that they did, and it did make a difference.
18:05
It it was, we could even see in our own family member that when when the fundraising started, their own wellness grew exponentially, and they could see that this isn't just me. This isn't just the people who have to care. This is people who didn't have to care. And it did make a difference. It's and it still does to this day.
18:23
And I think that's true for all survivors to know, you know what? I do matter to someone out there. It may not be the people I wished it mattered to, but I do matter. And I don't know. I think that's a a profound thing in its own way.
18:37
Speaker 2: I also want to weigh in real quick on that on that thought. Like, I think one thing that I I'm I'm having a tough time putting my thoughts into words necessarily, but I think one thing that's really helpful in in outreach of any kind, whether it's a charity or family members or friends or just somebody showing up for you. It doesn't even necessarily have to be the people that you wanted it to or that you expected to be there. But particularly when they help you get treatment, like, that's an extra extra layer of of assistance. I think sometimes, and I don't think it should be surprising or something that anybody is terribly alarmed by, I think sometimes the initial relief when someone shows up to help is purely from a survival basis first of, oh, thank goodness.
19:26
I am I'm I'm I'm okay for this moment. I'm gonna get the things that I need. And that initial, rush of of relief and comfort and wellness and the ability to thrive really comes can sometimes just come from the the relief of survival of, okay. Okay. I did this.
19:46
I'm I'm gonna be okay. Somebody help me get this thing, and I'm relieved, and I am I am progressing, and I'm doing all of these things. But it's not as so it's not as if the the heartfelt care and compassion was just missed on that survivor. It's not like they just didn't see it. And I think sometimes people who help think that they didn't see it or or worried they don't or don't feel that immediate gratification of, like, but I did this thing for you, and I really helped.
20:14
And no one seems to recognize that I really helped when no one else did. I think it's just that we have to come back to that. Like, I got put on a post it note for a brief time where it's like, I saw it. I felt it. It really mattered to me.
20:27
But, a, I
20:28
Speaker 1: couldn't take it in at the
20:29
Speaker 2: time because I just wasn't well enough to take in kindness. I didn't think I deserved it. I may have been filled with incredible messages of guilt or shame or embarrassment for speaking my needs or just fear that the that someone's gonna pull the rug out from under me or just this litany of concerns. And so but you still get access to sometimes treatment or even just something else, even if it's not that. But that's the initial rush of of of calm or progress or growth.
20:57
But, typically, most folks will come back to that awareness of, oh, that's right. These these these people or this friend or this, anybody showed up for me, and wow. Was that a big healing difference? And I can finally take that in now. It that might take years.
21:12
It honestly might, And don't be surprised if that's the case. That doesn't mean that your gesture wasn't really important. It just means that for whatever for whatever reason, where they were at in that time couldn't fully take it in or trust it or embrace it. But they were still getting well, and they'll probably come back to it later and feel pretty grateful or feel that extra step of healing later when they can turn around and go, wow. Okay.
21:36
I did have people on my side. What a relief.
21:39
Speaker 1: I didn't think that there would be anybody, but there were there were people, and
21:42
Speaker 2: I'm really grateful for that.
21:43
Speaker 3: I so appreciate you saying that because learning to tolerate the good can absolutely be as challenging as processing some of the hard stuff. And I know on the podcast, we've talked about how last year we had our first birthday party and just a few, like, two or three safe people, people we knew are good and safe, showed up for our birthday and, like, took us to lunch and we went for a walk and then they went home. Like, it was super simple. It was so safe and it was so simple and they did it so well, but it literally took us the entire year to process that.
22:24
Speaker 2: I believe it.
22:25
Speaker 3: How would a clinician know that you were a resource and what you could do to help them?
22:31
Speaker 1: What most of them tell me is that they start their own Google search or their own web search of some sort and say, I've I've run out of ideas. I don't know what to do, so I just sort of started typing things in. And I don't know if it's a bad thing or a good thing. It's good for us, but it's bad for to me, it's a bad thing in that there there just aren't very many things when you hit Google and you type in complex PTSD or dissociative identity disorder. There aren't very many things that pop up in terms of help or assistance.
23:02
And so I think, unfortunately, because of that, we're just right there. We're we're kind of front page news. So very often, they find us there. More often, though, will be one of their clients will come in and say, I was searching the Internet, and I found this. What do you think?
23:21
Can you can you follow-up on it and make sure that I'm not getting myself into a rabbit hole that's, you know, that I've I've walked into a really bad organization. Can you can you give them a call and see what you think? So we from from the clinician standpoint, it typically comes from one of those two avenues. Either they themselves were saying, I don't know what to do. I think my client needs a higher level of care, or I think I need to learn more, I don't know where to go.
23:44
Or their client said to them, can you look into this for me? And and so that from the client standpoint, that or I'm sorry. From the clinician standpoint, those are typically how people find out about us. We are also members of the ISSTD. And so, occasionally, there will be people from ISSTD who will just hear about us through the through their almost like a vicarious experience and and reach out that way as well.
24:09
But that's much more limited right now.
24:11
Speaker 3: What about a survivor? What what is it that you help them with that they could look on your website or contact you if they needed help?
24:21
Speaker 2: I'll speak to that. So, of course, one of the primary tiers that tends to lead a lot
24:25
Speaker 1: of folks to us is
24:26
Speaker 2: if they quite literally can't pay for treatment. They're looking for support. They're looking for financial support. That tends to be one thing. And that sometimes ends up being through the grapevine, or because their own clinician told them or was looking for resources for them or something.
24:41
There's a lot of ways that people stumble into that because it's such a massive stumbling block that just about all of us, at least in The US, tend to run into, trying to pay for it. So that's that's, of course, the the primary tier for a lot of folks just because nothing else really exists. That is in that sense, we really are the only ones kind of doing that in this focused way. But broader than that, I think one of the main things that tends to lead a lot of folks to us is either they're concerned or they're aware that they have trauma or they have association or they have these really unmanaged symptoms and starting to Google around or look for how to explain what's happening or look for familiarity or community or somebody who can put into words what they're going through. But I think honestly, more often than not least in my experience and the people who interact with me often is sometimes they'll find so I often put together a lot of, different articles and, coping skills from grounding one zero one, self care tools, self, distraction tools, like lots of things like that, how to help manage flashbacks, like very, psycho ed kind of things, but also from a survivor's perspective.
25:54
And they're often very lengthy and detailed. And so someone might come for that, and they might not even be aware that they have trauma. They might just be looking from a very more generalized and broad mental health perspective and just like, oh, I was needing some coping skills for my my emotions or, these nightmares I keep having or something like that. And I ran into this. And then after I ran into the this, I kept I I just kept looking on the site.
26:22
And then before I knew it as I was reading, this is all describing me. And so sometimes they tend to discover for themselves even, somewhat accidentally, sometimes because they had a hunch that maybe this thing that they have possibly minimized or invalidated in themselves for a while is a real thing and a valid thing and a really complicated and nuanced thing. So that tends to be one of the the other ways that people tend to run into our materials. And to be fair, a lot of the things that we do tend to offer, at least at the moment, the resources tend to be tools that can honestly help anybody. They're not always necessarily so specific to trauma.
27:06
They're written from that perspective and are definitely aimed to be helpful in that way.
27:10
Speaker 3: And can you speak at all just about the experience of being a support person and what is hard about that, what is good about that, just in general terms of what you've seen, experienced, what hope you can offer?
27:25
Speaker 1: I I think there's actually a lot of hope that I wish there were sometimes I wish there were books that were were truly written from a a a very helpful perspective. Many of the books that are written, I I don't like it all. In fact, I can't say that there are any that I've read that I I truly like. But largely because they come at things from a very negative experience. And it it is challenging.
27:49
I'm I'm I mean, I don't wanna, you know, color code it. It it's it's challenging to watch someone that you love fighting for their life every day and not know if they're gonna make it. And not because they don't want to, but because the symptoms are just so in themselves, they are so challenging for for a survivor that sometimes you know that at any moment something could go wrong. And that that is always hard. And then it wouldn't matter what what illness was that someone's facing.
28:19
That's that's just the truth. It wouldn't matter what it was. So in in many ways, it's exactly the the same as as watching someone fight a medical issue. It it's painful. The other hard part is that so many places that, you know, your own survivor's going, they they don't know how to explain things to you.
28:38
And as a support person, particularly if it's if you're a family member or an extended family member, it's kind of has to be. And I and I understand that now. I did not initially understand that it has to be assumed that you might be a you might be a part of the problem. You might be one of the perpetrators, or at least the therapist has to assume that you might be. And that was really hard to come to terms with to have someone constantly constantly sort of looking at you with with extreme scrutiny.
29:05
And and I understand and appreciate it now, but at the time, I did not to have people kind of cast doubt your way. But you it's it's just one of the steps. It's just something you have to you have to kinda hold your head up and go, no. And if I know I'm real, I know I wanna help. I know I'm doing the right things, and so I just have to keep trying.
29:23
And and, eventually, that that clinician, that therapist, that doctor, that psychiatrist, they're going to see that that I'm I'm the real deal. And so you have to be patient, not only with your survivor, but with the community itself. You you also have to to kind of just keep turning the pages because sometimes the person you love cannot. They they might have a day where everything looked really great, and then another day where nothing looks good, where every symptom is is out. And and interestingly, one of one of the therapists, and and I I don't even remember who or where along along the many years, said, you know, the truth is on the days that things look really great, that's probably when things are actually very bad.
30:02
And they're doing a very good job of covering it all up. And it's the days that things look really bad that that means they're addressing all the things they need to address, and it's just a really hard day. And it took a while for that to sink in for everyone in our family because, you know, a holiday would come or something. They go, oh, our family member's doing such a great job today. And then we'd have to remind each other.
30:23
Well, that actually means they're really struggling today. That if it looks really good, it's probably really bad. And then tomorrow, when everything falls apart, we'll go, okay. At least now we know that our loved one is is doing what they can to work through all the things that they need to. So there again, it's just a huge learning curve.
30:40
And at least today, as opposed to twenty years ago, there is a little bit more science behind all of the information that's out there, whereas, you know, fifteen to twenty years ago, a lot of it was just theory. And, fortunately, some of those theories have at least been proved through science to have been accurate. Thank goodness. But many of them were proved not to be. And so now we we do have a little bit more working knowledge for those who are interested in learning about it.
31:07
There's more working knowledge than there was before, which does make it a slight bit easier as a support person to kind of read up and understand and know how to be a little bit supportive. But you really I mean, I don't wanna say you can't be hands on, but you really shouldn't be. It's an. It's not yours. And when I we can step back and say, tell me what you need, and I'll do what I can.
31:31
But they still have to take the journey on their own. We we can't we can't make that different for them, and we can't take it on ourselves. All all of those things sound hard, but they're they're really not when you when you sit back and go, okay. This is no different than anything else. You just have to to be literally a support person.
31:47
I'm I'm not fixing it for you. I'm not responsible to do that, and I can't let myself feel bad if it's not going the way I think it should for you. I just have to let you do what you need to do at the pace you can do it and be here to help in whatever way I can, and that's really it. That's all I can do.
32:02
Speaker 3: That was so powerful. And I feel like you put words to things that even I have been wrestling with, you know, since the birthday party, for example, and and not knowing how to explain that. And those good days where partly, like, let's have everything in order so that we can fall apart and partly let's have everything in order so you're not worried about me and because I care about you and partly let's have everything in order and a great day so that I'm not hurting you and also all of this going on in the background. And you just you just really describe that in ways from a different perspective, from the outside perspective that I had not been able to put into words because I'm so focused trying to put my own stuff into words. And so I really appreciate that very much.
32:56
Speaker 2: I was just gonna really quickly add that, like, what you were just saying there about the the battle to find your own words or how to communicate these things to each other, particularly when as a survivor, it's, like, it's hard enough to keep all your ducks in a row in general just to, like, be okay and and safe and make sure that everything's organized. But I feel like also one of the other big barriers both as a support person and on the survivor side is finding that language. Like, it's just very, very challenging to explain the experience. And I've I've witnessed it from kind of honestly both sides after after long enough. Once you're in this world long enough, be being a survivor on one hand, but then having new friends or new people that you you meet, and some of them are at the beginning and and struggling more.
33:42
Or they're maybe even off the beginning and just struggling a lot. And so becoming that support person for them, and they might struggle differently than you struggle. And trying to find that language of how to communicate that is is hard sometimes, particularly when resources for support folks tend to really focus on the, like, minutiae of criteria and science and and terms that they don't understand that are just like, here's this symptomology that you can expect to see, but it's all very high brow or very, intellectualized or just very kind of distant and not really explained. But what does that mean in practice? What does that look like in a in a body, in a day, in a in a and what's the variation from one survivor to the next?
34:28
I don't really know. I I'm having a hard time understanding what those words even mean. And the same thing on the flip side from a survivor. They're often learning these things in a point of crisis or disrepair or a time that they're struggling and don't really have the time to, quote, unquote, go back to school and get educated. Like, that's like I'm not in the place to do that right now.
34:48
My my frontal lobes and my, like, brain not ready to do that. Like, I'm in this pure survival mode. I don't have it I don't have the ability right now to to take in intellectual information. So sometimes there's a gap there, and the ability to understand one's own experience is often missing or just at least lacking either from an educational point of view or also because survivors tend to dissociate away from our bodies and our emotions and labeling those things in general is really, really hard even if we do have the language and the education on it. It's just it's really hard to put those things together.
35:27
So then trying to then do that and explain it to a support person and and find that barrier, that there's just such a barrier there. And, hopefully, one of the other big reasons that I wanted to
35:39
Speaker 1: do what I do and take on
35:40
Speaker 2: the role I do is to try to provide some of that language, to try to humanize some of these experiences and break down different criteria or break down different kinds of struggling or or ways to help someone who's struggling or help yourself in a way. Like, once you can understand what's happening in yourself a little bit better, it it makes applying tools a lot easier. But if you can also put it out the information out there, well, then any support person could also run into it and go, oh, wait. Okay. Now I understand what I'm seeing, and I understand why.
36:12
I I know it's not my fault or that this is different or that they're not, you know, faking or doing this for attention or some of the other really negative stigmas and stereotypes we get put on us sometimes. But this has, like, a really good basis, and there's a reason for it, but, I know how to work with it more. If I know that that's where it's coming from, well, then I know that maybe these interventions or this kind of support might be way more helpful or healthy even than than this automatic knee jerk response that I thought was gonna actually be the most helpful. I realized I may have accidentally just made this a whole lot worse, and I really didn't mean to. But that language barrier and that explanation of this is what I'm experiencing and, of course, the no.
36:51
I'm not trying to say that the things that I put up are gonna, like, apply to everybody. Not not like that, but just, like, again, a general shared language or experience or or way to bridge that gap for kind of everybody. I think, a, it makes a difference, but b, above all, was really sorely lacking in this space, and we need so much more of it, so much more of it. And I think that's where we'll bridge a lot of those divides for a lot of people, survivors, their supporters, their clinicians, all the endless list of spokes that come out from this whole thing.
37:22
Speaker 3: Lexi, what has that been like for you to move from your lived experience to being able to use those experiences for good as you have?
37:31
Speaker 2: Great question. It has been incredibly rewarding. I think I didn't really expect that it would be. I think so in my personal journey of being in therapy or in group settings or inpatient settings and, like, creating a a network of other folks like me, already, was kind of a bit of a natural thing that I tended to do on my own anyway. Just like in a in a close proximity of the people that I was with, it just it I got lucky that somehow things made sense or clicked or I could realize, okay.
38:09
This is what they're saying, but I can see where it is not making sense to you, and I'm gonna help Bruce. So that was just kind of a natural ability that I had, but I don't think I really got the same rewarding experience of, okay. This really just made a difference for somebody. It was just a if anything, I think, honestly, some of it was bred from frustration on my point. I'd watched these conversations happen, and I was just frustrated intellectually.
38:31
And I was like, woah. We're on different pages here. We need to help you get from a to z and what like, let's do that. And then was missing the the rewarding piece. And now to get a chance to be more stable in my place, but also do it on a much larger scale and see the impact and use that has there's no other word for it other than rewarding.
38:51
But I think also, and this might get a little maybe a little taboo for some folks, but this is my personal experience and it's entirely okay if this doesn't resonate for for you, or anybody else. I think one of the things in my own personal journey independent from all this that was really hard with sometimes hearing folks say thing like, everything happens for a reason or you're you're never put through anything you can't handle or these kind of things. I felt like those personal messages for me felt very, cruel and, like, the most unloving thing that could happen to a person or that I was basically only put here to suffer so that I could turn around and then help other people who were also made to suffer, which all seemed so unfair to me. Like, it just kinda wounded my spirit a lot to think of it that way. And so when I would turn around and help people and make a difference in their life, people would sometimes, at least in my personal life, would say, well, see, that's why you had to go through it so you could help them.
39:49
And that just felt so wrong and abrasive. Like, it really stung me in that way. But something about doing things in this way by my own choice, my own volition in a big way and the way that I wanna do it helped me create meaning from something I shouldn't have had to go through. That's completely unfair, but I was somehow able to give it meaning. That's not why it happened, but I turned it into purpose.
40:15
Speaker 1: I I gave it a
40:16
Speaker 2: thing of it. Well, if this was gonna happen anyway, if this was just gonna have to be this, I I have the choice now to give it meaning, give it purpose, give myself and my life purpose and meaning in that way. And that's definitely not it has to be the path for everybody. It just somehow worked for me. It spoke to that that hole in my chest that somehow did wanna help in this way.
40:36
I did wanna make a difference, but I needed it to be kind of on my terms and in my what my framework for understanding that concept and being like, okay. I have this. I could just move on and leave it all behind, but that will also make me feel empty and unwhole when when there is so much I can do with this. So I'm gonna give it a meaning. I'm gonna give it a purpose.
40:55
I'm gonna give my life and and and my all my experiences. I'm just gonna do something with them, and I can't otherwise, I'm just wasting it. And then what was all that for? That just makes it even more senseless and more cruel and unfair that I had to go through if it's also then just not gonna be for it. Like, that just feels even worse.
41:10
So why don't I go ahead and and put it put it to use? And I don't know. It helped in not just a literal sense in helping other people and healing that, but also just in my own therapy and journey and desire to keep going. It feels like I have a a bit more of a purpose and a meaning, and I wanna make my own days count and matter and things. And I hadn't really ever had quite that level before, so it helped.
41:36
It it definitely also helps supply a lot of hope and warmth and comfort on the days where it is sorely lacking. It helps in that regard too. Really good at, by the way. I
41:48
Speaker 3: think that that's so powerful what you said because there's truth in that. Because when people say this is why you went through everything, it gives the credit for the good that we have brought out of it and the meaning we have tried to make. It gives the credit back to our abusers. And that's so triggering for me. And so it makes me crazy when people say those things.
42:08
So I'm with you on that. And I love though the deciding for myself to use it for good in my own way and making meaning out of it in a way that's powerful for me. We have chosen to write a book so Anne will send it and you can see if there's any hope in it or not.
42:31
Speaker 1: Excellent. I'm sure there's quite a bit of no doubt in my mind. Absolutely.
42:36
Speaker 3: Oh, my goodness. I just I also wanted to say thank you for joining us for the DID awareness day panel that we did. That's how I we had connected through that, and and I so appreciate you all being there. What was that experience like for you?
42:52
Speaker 1: Depends on which one of us you ask. I I think in many ways, it it was it was cathartic for me because we really did, you know, some like I said, probably seven years ago when we when this all kind of just slowly birthed itself, it did we never imagined never imagined that we would have any sort of national impact. We I don't think we even honestly thought we would impact the state of Pennsylvania, let alone the nation or begin to reach out globally. That wasn't on the the spectrum of thought. We just wanted to help someone.
43:27
Could what if we help a family? What if we help and then it grew into what if we help two families or three or six or 10? And each year, the number just exponentiated. So to be invited with such incredibly esteemed and and wonderful survivors such as yourself and and Kathy in Australia and Jamie in Florida. Such esteemed women who've worked so hard and are so incredibly successful.
43:53
It it was just it felt wonderful to know we did it and we did it right. We did it slowly. We grew cautiously and slowly rather than kind of go too quickly and grow too so fast that it all just fell apart. So it it for me, it felt great because we did it, And and I really didn't know if we would. So so I I that was my experience.
44:14
I I think Lexi's might have been a little different than my own. So but but I'm sure it was still good. But Yeah. Yeah.
44:22
Speaker 2: I can obviously weigh in on that. I wouldn't no. Nothing about it was negative. Nothing like that. I just for me, I mean, similarly, this is this was a really big deal.
44:33
A lot of it was never done before with people I really deeply respect and admire and have looked up to, not just recently but for a very long time. And to kind of be in amongst that almost as a peer was incredibly wonderful but incredibly intimidating. I unsurprisingly, as as the survivor that I am, tend to be someone who prefers to blend into the background and go unseen. And if I can make a difference very under the table and through the back door and maybe no one even knows it's me, cool. If you take credit for what I did, cool.
45:09
I don't really care. As long as it helps people and we don't know who it came from, that's okay with me. I don't need that. That tends to be kind of my personality. But, also, it was really important to me.
45:21
Like, I wanted to be I I completely elected to to be a part of it because it really, really matters to me. It's really important. And I also know I wanna get a little more comfortable with that so that I can make a bigger difference for folks. It was a wonderful experience, a big honor, and I think will make a lot of, change for a lot of folks, both survivors, clinicians, therapists, doctors, family, like, again, the endless list of people who will really benefit from that and that was a big deal. It was just incredibly nerve wracking.
45:51
I'm not exactly the best speaker. I am a far better writer than I am speaker so it was a little overwhelming then and none too different than right now. But But I'm doing okay. So we'll we'll take it.
46:06
Speaker 3: I think I think it was a big deal. It was a big deal culturally. It was a big deal for ISSTD. It was a big deal for us survivors to sort of come together on the same panel. And I loved that our panel was not just lived experience, but resources from and by and with lived experience.
46:28
I think that was absolutely perfect. I loved that so much. For me, it was a big deal. I remember sitting in the committee meeting when we were talking about possibly doing this and it started getting put together and who did we want to invite to be on there. And and we're kind of having this conversation in a meeting and I'm advocating but trying not to be pushy because I wanna keep I wanna be able to keep helping.
46:52
And if I push too much, then I can't you know, I don't wanna get kicked out or something because I say one too many things. And then they then they turn to me and say that I can moderate it because of the podcast. And I'm like, no. No. No.
47:06
No. No. This is not the same as a podcast.
47:11
Speaker 1: And Right. Yeah. Not my goal.
47:13
Speaker 3: Yeah. Personally, for me, it was a big deal. I I there's there's the pragmatic piece that a podcast I can edit before I release it to the world, And this was a live thing that we did. And so I was so nervous and so shaky, and it was a big deal. And then also, not the only piece of my story, but one piece of my story is being a survivor of child sexual abuse materials.
47:39
And so being on camera was a really big deal for me, and I don't think that I could have done it without the pandemic pushing me into Zoom for the last year. And I thought of all of the ways that I was not ready for that and yet all the people that sort of supported me all the way so that as I sort of moved slowly my chair closer to the camera during these meetings that by this time I'm sitting here and I'm trying to start, you know, texting me as it's time to start. And I'm just still sitting there thinking I'm on camera. I can't do this. But I could, and we did it.
48:19
And Lexi was there talking, and and Anne was there, and Jamie was there, and Kathy was there. And I thought we have just created this space of powerful and empowering women, and look at what healing is happening in here just by receiving questions and sharing our stories and answering them. And the people that attended were from all kinds of stories and all kinds of backgrounds and all kinds of different people. And to feel that in that room, even if it was virtual, was just, it was such a special experience and it made me feel so connected not just with all of you but with gratitude somehow, with a recognition for in that moment, none of us were alone. And I just felt like that was so powerful.
49:15
Speaker 1: It was. It was. And even from my own perspective, when when the cameras closed down and we kinda closed the tops to our laptop to sit there and go, you know, how many years of wondering, will my loved one ever be able to live a normal life? Will they ever be able to work? Will they ever be able to go to school, have a family?
49:33
All of those things. And then to sit there and go, oh my goodness. There were at least, you know, between Alexi, yourself, Jamie, and Kathy, right there were four of the most well put together women on the planet, let alone with DIV. So for for someone who's watching, not not just the survivors, but even the clinicians, that was an incredible affirmation that this is this isn't just something that you get and you don't recover. You you can you can live exactly the same life anybody else is living.
50:05
It's not easy to get there. It's not always pretty, but you you can and you will. If you're able to find the resources you need and you're able to do the work you need to do, it is more than just possible. In fact, it is probable. And that's exciting.
50:19
That that was that was kind of like the icing on the cake for a lot of the survivors and the clinicians, at least from what I'm hearing in feedback there. They were both impressed going, oh my goodness. That is a clinician reminds me I have to try harder because this person has a life to live, and it's my job to get them there. And as a survivor, it it helped them to go, you know what? I have a life to live, and and it's my job to throw myself into this so I
50:41
Speaker 2: can get there. Yeah. Absolutely. And I was just gonna add on to that. Like, it was I well, one of the things that I took away so much was also the same feeling of, like, we are in here we are in this together.
50:52
No matter how nervous we might be or our own personal hiccups or things like that, there is support here. And even if we were all really nervous up front, the the the deep exhale that I think we all felt after we initially presented and things kind of became more conversational, was like, okay. We're in this together. Everyone's okay. It's alright.
51:13
Feeling that safety, which is just such a foreign feeling to so many people, and to do that in front of so many people in a in a situation that really does not lend itself to the feeling of safety, to feel that in such a way and to kinda almost feel that others are feeling that was also just really powerful. But I think also, I actually really appreciated that there were kind of gradients of of of lived experience. Like, though there's a lot of secure, powerful, and well put together things, you know, all our people and whatnot, like, that is accurate, but also there was still a level of discomfort. We were still all very authentic that this is still hard. And, yes, we're things are we're still putting putting things together and and speaking coherently.
52:02
But behind all this might still be some some struggle or really anything or even just the variety of I still need to be anonymous and that, you you know, the the just I don't know. Like, the the there's just so many layers and different things. So there was still the realistic perspective of there will be gradients in between, but also here's an here's a demonstration of of where things could be the level of success or however you define that or life or or or what you're what you could be capable of. But, also, the entire time, we're still talking about all the barriers in the way that keep people from getting there. So if you don't feel that way, if you don't identify with the few of us that were on stream, if that feels completely intangible and, like, an absolute impossibility to you, we weren't being unrealistic with, like, that is an understandable feeling.
52:53
Because right now, though that is possible with the condition, it's not always necessarily possible in terms of what's available right now. And we're not gonna forget that, and we're not gonna lose sight of it, and we're all still working through it on our own and trying to make that a possibility for everybody else who hasn't gotten there. That's literally why we're here is to help make that a possibility for everyone else because you can look around and see it is possible. Now let's go through all the steps to make it possible for everybody. And that to me was also really powerful.
53:21
Speaker 3: I think that's so important. And I loved the respect that we had amongst each other of this is where I am. This is where you are. This is what I need. This is what you need.
53:31
And sort of the layers of consent involved in that process and putting on the panel, I just I really, really appreciated that. I loved the self care and the boundaries of I need this and I need this. And I needed I for me and my story, and I can say this because I've already talked about it on the podcast. I I was okay with the progress of being on camera this time, which was my first time to do that, but I could not have them tag me on social media. I have I have social media that I'm starting with the podcast and kind of easing into that but but I couldn't have them just only using my name because I have an abuser who still has a Google alert out on me and it causes problems.
54:16
And so just the you know, everyone had different needs and different not just progress in therapy, but here's what is comfortable to me and what is safe to me and the limits I think of I think of Jamie sharing on the panel. Just she was telling her story and then like in less than a whole sentence, she was like, and we did not choose integration and that's okay for us. And then she just kept going. Like, this is the piece I wanna share with you, but here are the boundaries around it. And all of that was just reflecting both the struggle and the safety that comes from healing and connection and caring for ourselves and each other.
54:53
And it was just so beautiful.
54:55
Speaker 1: Absolutely. Just tremendous amounts of hope on on our from our end that we do we do see a small change. It is small, and it needs it needs to improve, but we do see it. We see that there are and as much as I I'm I'm older, so I I sometimes get caught up in that old lady thought of, you know, the Internet's a terrible place. It should never have started.
55:16
But then there's you know, the reasonable side of me comes and says, no. It's made a huge difference. It it's made such an incredible, wonderful impact in many ways that that there are many people who, you know, is, again, as little as twenty years ago, would never have even identified the fact that they had experienced abuse. Whereas now, people are beginning to understand it earlier in life. They're beginning to understand that something isn't right, and I can look for an answer, and I can find someone else who's been through something like me.
55:42
And before you know it, they start to put pieces together. That's exciting to me to see that people are learning about things earlier perhaps in the journey than waiting until they're 40 or 50 or or older to come to an understanding of of what their life held as a you a young person. And then even with clinicians, there is a a bigger understanding that they do need to learn more, that you can't just go to those you know, typically, in at least here in The US, it's two years of, you know, extended learning. The first two is kind of the basics. Everybody gets the same courses.
56:12
And then those last two, you get a little bit more into your profession. But even that isn't enough. You need to learn more to understand complex trauma. You need to un and even more to understand dissociation and dissociative identity disorders and how to help someone, genuinely help them, not just identify it, but genuinely help them. It it's increasing.
56:34
The science is increasing.
56:49
Genuinely science is increasing. The understanding is increasing. The understanding that there is more need is increasing. It may take a little bit of time, and I sure hope that it happens during the lifetime that I'm still here on this planet. I hope I get to see it before I leave where there is more access and understanding and accessibility to everything that everybody needs. So I I I feel more hopeful than I ever did, and I do think we can make it happen. And I sure wanna see it before I go, so I'm gonna work real hard. So yeah. And I think there are other people who are working real hard for it too.
57:07
So that's just something I wanna share before we go that I'm I'm I'm still very, very hopeful and feel real good about where things are heading. I would not have said that ten years ago. And I think from my side
57:20
Speaker 2: well, first, of course, tremendous gratitude, to you and everyone else who's made these kind of things available, but particularly for you right now in in asking us to have this opportunity to speak and and let others know, but also just for the work that you're doing on your own. I think for so much of the progress, while a lot of it is educational and re research based and providing folks with information, I think there's also been tremendous progress in survivors feeling a little bit more comfortable to at least try to to put themselves out there and and be known and and let people learn from them. And that takes so much strength and bravery when the world has not quite caught up to where we're hoping to get it to. And so so much respect and gratitude to folks like yourself, to literally anyone out there who is trying, whether it's just in their family or their community or online or anywhere that I see that. I respect it.
58:16
It's incredibly moving to me. And anyone who ever tries to reach out to us and ask for help, that is such a huge step. And if I rewound the clock and I imagine when I was at my greatest speed for that, I don't think I would have been able to do it. I don't think I would have been able to reach out to somebody else for help and ask them. Not like that.
58:34
And I just know where I was was at in the time. That would have been way too terrifying. So anybody who does that, I see the strength that that takes in spades. That's just incredible to me, and you deserve it. And, absolutely, you deserve no less.
58:50
It should have been available to you a long time ago without needing someone else. And that's just that has been a thing a a really moving thing for me to witness, and I hope I can I hope we can encourage other people to continue trying to reach out for help to safe people, the people that you trust? I I can also speak from experience that I think if I had run into an organization like ours, like, if I had just seen it online, I'll wholly admit, I don't think I would believe it or entirely trusted either. I mean, there are a lot of bad actors out there, people who claim to be aware and helpful but really aren't or or at least they're not quite confident or on the level that you need them to be. And so if you're mistrustful or doubtful or or need to just, pay attention for a little while while longer or just kinda feel it out, totally understandable.
59:36
I don't blame you. In fact, please do that. Please take that time to feel comfortable within yourself, to gauge for yourself if this feels safe or is a a healthy connection for you to make. And if you decide not, that is incredibly okay. And this exercise in boundaries and respect and pacing that everyone is demonstrating both in the awareness side of things, but also in the sharing side of things is vital, and it needs to stay intact.
1:00:02
Those are the best qualities we could have, and I just love that. I love that, and I hope it stays there. And I hope we continue to respect each other wherever they're at in their journey, and whatever that looks like. And I hope that us, of course, as an organization can use to do that. I'm sure that we will, but I hope that we continue to do that.
1:00:20
But, also, thank you again for encouraging the same in your audience and really, really driving home how important that is and valuable it is to do things at your own pace with the correct boundaries, safely, intelligently, and with your care in mind with what's best for you.
1:00:37
Speaker 3: Lexi, I was just sharing my experience. I did not mean at all to to any kind of microaggression there about you not being on camera. I didn't even think about that when I was sharing, so I apologize for that insensitivity.
1:00:49
Speaker 2: Highly okay. I thought it was really important. And I also think that that was really important for you to say because everyone's in a different place. And that's that was actually more exemplary of that fact that that was a challenge for you, and yet you did it. And I needed what was right for me and I did it.
1:01:03
And that was actually really important to both can be very different and both are equally as okay as a progression.
1:01:09
Speaker 3: I really appreciated our conversation because I think it's important.
1:01:13
Speaker 1: Take your time.
1:01:14
Speaker 2: Thank you. Absolutely.
1:01:15
Speaker 3: Okay. Thank you so much for talking with me.
1:01:18
Speaker 1: You are welcome. You try to have a good night and and a a great rest of 2021. Thank
1:01:25
Speaker 3: you. Thank you for joining us for System Speak, a podcast about dissociative identity disorder. This podcast is available on any podcast player and on systemspeak.org. If you would like to know more of our story, our memoir, If Tears Were Prayers, is now available at systemspeakbooks.com. Thank you for listening.