Episode 30: Jules Journey with EDS
Jules Journey with EDS
Jules Murphy works as an executive assistant for Insight Global at Dignity Health. She has recently started documenting her journey online as an autistic woman with Ehlers Danlos Syndrome who is living life to the fullest while working and raising special needs children of her own. Her social media accounts are full of practical life tips and tricks for succeeding with special needs, real and authentic experiences in overcoming the challenges of being autistic and healing from complex PTSD, and how to raise special needs children when you have special needs of your own.
Social media and contact information:
TikTok @julesjourneywitheds
Facebook Jules Journey
Instagram Jules Murphy
Email julesjourneywitheds@gmail.com
Podcast Transcript:
Damaged Parents: [00:00:00] Welcome to the Relatively Damaged podcast by Damaged Parents where sick smashed and torn people come to learn. Maybe just, maybe we're all a little bit damaged. Someone once told me it's safe to assume 50% of the people I meet are struggling and feel wounded in some way. I would venture to say it's closer to 100%.
Every one of us is either currently struggling or has struggled with something that made us feel less than like we aren't good enough. We aren't capable. We are relatively damaged. And that's what we're here to talk about in my ongoing investigation of the damaged self. I want to better understand how others view their own challenges.
Maybe it's not so much about the damage, maybe it's about our perception and how we deal with it. There is a deep commitment to becoming who we are meant to be. How do you do that? How do you find balance after a damaging experience? My hero is the damaged person, the one who faces seemingly insurmountable odds to come out on the other side, whole those who stare directly into the face of adversity with unyielding persistence to discover their purpose.
These are the people who inspire me to be more fully me, not in spite of my trials, but because of them. Let's hear from another hero. Today's topic includes sensitive material, which may not be appropriate for children. This podcast is provided for informational purposes only and is not intended as advice. The opinions expressed here were strictly those of the person who gave them.
Today, we're going to talk with Jules Journey with EDS. She has many roles in her life, mother, sister, daughter, advocate, and more. We'll talk about how it took a long time to get a diagnosis that clearly made sense and doctors questioned her and how she found healing.
She is also one who gives voice to those who don't have one in today's world.
Let's talk
Welcome Jules to Relatively Damaged by Damaged Parents. Today, we have Jules Journey with EDS on. Thank you for being here.
Jules Journey with EDS: [00:02:11] thank you so much for the invite. I've been really excited looking forward to it.
Damaged Parents: [00:02:15] Yeah, I'm really honored. You know, I'm just going to blow this out of the water. I have known Jules. Gosh, 10, 15, 13.
Jules Journey with EDS: [00:02:24] been a long time.
Damaged Parents: [00:02:26] been a really long time.
Jules Journey with EDS: [00:02:27] long time, the kids were little,
Damaged Parents: [00:02:30] Very. Yeah.
yeah, definitely. And there are even some things about you that totally surprised me and struggles. I knew of some of your struggles and not others of them and. I'm just gonna say it because even my nephew, there are certain behaviors he struggles with. Asperger's the high functioning autism, and he has a certain look and I never saw that in you.
So I, I mean, I know that's a prejudgment. I know that's a bias and I'm thinking maybe that has also been part of your struggle in, understanding. What's happening with you and, what's going on in your life and your body.
Jules Journey with EDS: [00:03:12] I think that was a huge challenge because as a female, not only with Ehlers-Danlos, but autism. And having a history of trauma that goes back to childhood, you become very adept at hiding. Your challenges. And when you are on that high functioning part of the spectrum, you become very good at observing.
And so I spent a huge part of my childhood, watching people, mimicking, replaying conversations, scripting all of those things to try to hide the challenge and the struggle. So when I finally discovered what it was that I had been struggling with my whole life, I can't even tell you the number of people that said, there's no way.
There's you don't have Ehlers-Danlos you don't have autism. There's no way you could be. You're so smart. You've got straight A's, et cetera, et cetera. I had, these very invalidating comments and I said, no, it's because I mastered the art of hiding. How bad the challenge was. And I still to this day tend to want to minimize or hide it, out of fear, out of shame, out of worry about being judged.
And so it's something that, with my social media, my TikTok, I'm using those to force myself. To stop, hiding, to stop minimizing and to start being real and very vulnerable and very open about those challenges. Because as I've learned, there are so many people out there who are struggling the same way that I did.
And they're afraid to reach out because they don't think anybody will believe them. They don't think anybody will help or be able to even relate to the struggle. So I think Yeah, in learning how to hide it. And in hiding it, I actually did myself a huge disservice,
Damaged Parents: [00:04:55] How so.
Jules Journey with EDS: [00:04:56] One is that I. When you have a condition and you are afraid to accept and own it yourself, it becomes even more of a challenge. You make it, I think, harder for yourself to overcome than it really does need to be. And you also do a disservice to those around you. They're your loved ones who. Can't really help if they don't know how bad the challenge is.
I think it's really important not to hide and not to minimize, to be open, to be real about what the challenge is. And then I think too, then it, there's kind of that give and take where when we're open and we stop hiding and we fully accept and embrace it. Not only can we learn to love who we are. And to rise above those challenges, but we can inspire others.
We can connect with others, others can inspire us. And then together as a whole life becomes much more rich.
Damaged Parents: [00:05:50] Yeah. So wasn't it scary though? what was your fear level the first time you admitted or shared what was happening with you? I'm thinking scary because for me it's scary, right?
Jules Journey with EDS: [00:06:04] It was terrifying to me for myself. I think I was more scared to admit it to myself than I was to admit it to anyone out there. I mean, just to say to someone, Hey, I'm autistic or to say, I have Ehlers-Danlos and someone go, what in the world is that? And to say, Hey, that's a weird disease. It's kinda new.
But this is how it affects me. It was more scary for me to finally admit it to myself. Because then when you accept it, embrace it. When you name the beast, so to speak, then you are able, you realize what you can and what you can't control. And to have been in a situation where, because of my challenges and because of wanting to mask and wanting to hide that control part comes in.
When you admit it to yourself, you have to relinquish at some point, some of that control and realize, okay, This is something that I deal with. This is a genetic condition. This is not something that I can beat down that I can learn how to not have anymore. There's no magic pill. There's no herbal remedy.
There's nothing that I can do anymore to fix or pretend that this isn't my reality. So I, that was the scariest part.
Damaged Parents: [00:07:16] Yeah. So we're people who, first of all, they invalidated you, but was there also this conversation of, Oh, you can be fixed. There's gotta be a pill for that. Not with the autism, I think because of autism awareness, but with the Ehlers-Danlos and whatever. And I think you have some other struggles too, like was that part of those conversations?
Jules Journey with EDS: [00:07:36] typically the conversations that did where that did come up, those were people that hadn't known me. Long-term. People that were just maybe on my following social media pages or friends of friends, people who really were caring and wanted to help, but maybe didn't know the best way to help.
And so I had to kind of just take it with a grain of salt and say, thank you so much. I appreciate you caring enough. But the conversations that I had with those in my inner circle, those who knew me the longest, those became more of a well. Let me be a little more open and vulnerable with you.
Let me share with you what it was that I have been hiding for the past 40 some odd years. And when I did start opening up and I did start sharing the things that I had really. Hidden inside the challenges that I had faced, how, and just even though I was studying the curve in my high school biology class, there were days where I would throw the book and I would be sobbing in a heap on the floor because I had read the same paragraph 10 times and I couldn't absorb it.
And I was afraid that if I didn't absorb it and perfect it and learn it, that I couldn't continue setting the curve for the class. That facade or that mask would start to slide. It would start to crack and people would see the truth. But when I set the mask aside and I started really being vulnerable and saying, well, this was my challenge.
I had a lot of people going, Oh my gosh, you're right.
Damaged Parents: [00:08:55] But it's true. I mean, people don't know how to respond a lot of times.
Jules Journey with EDS: [00:09:00] Yeah. Like when I told my mom and my sisters, I was like, Hey, I'm I guess what I'm autistic. And guess what I have Ehlers-Danlos and guess what? I have all these other things then guess what? The PTSD that I thought I had is not PTSD. It's now complex PTSD and all of these things. And we started really opening up and having these conversations, it was kind of like, wow.
And then it was followed by almost. A period of silence, you know, it took them time to process it, which I can totally understand. It took me time to process it too. And then they would come back with, so tell me more, what is this? And that was really empowering in a lot of ways, because then for the first time I actually got to own it and to start telling people about it
Damaged Parents: [00:09:44] So did you tell that inner circle first?
Jules Journey with EDS: [00:09:47] I reached out to my mom and my sisters. Well, I told my kids first simply because a lot of the challenges that I deal with are genetic. And their dominant genetic traits. And so I knew that my kids, they needed to know it was a situation where when I was in the office with the geneticist and the results came back and she said, you are definitely somebody with Ehlers-Danlos, your numbers are very high.
Your scores are high, you definitely have it. And she said, you know, your kids have a 50% chance. Every single one of having this it's dominant gene, And I just, literally, I just broke down sobbing and I think she misunderstood. It could, because her next response was, I am so sorry. I am so sorry.
You've had to go through so many years of testing and feeling like a lab rat I am so sorry. It took you so long to finally find the answers 40 years to find the answers. I wiped the tears. I said, no, no, no, no, no. You don't understand. I am so glad. I am so grateful that I finally know what this is because now my kids get to find out instead of having to go through 40 years of this, and maybe I can take my journey and this whole process and use it to help somebody else out there.
Who's going through their 40 year journey. I let them know that there's hope. Just don't give up, just keep going. And that it's okay. So I said, these tears are not me thinking, why did I have to go through this? This, these are happy tears. These are tears of joy of finally knowing how to name the beast and now having an opportunity to go out and use it to go help somebody else and to hopefully, Create a situation where my kids have opportunities and supports and things that I didn't have, through that whole process.
Damaged Parents: [00:11:29] Yeah. And I'm thinking throughout that process, there were probably times where you felt, or maybe people said things in clinical settings where. You were going crazy. What was that like? And how do you, keep getting up when things like that are happening?
Jules Journey with EDS: [00:11:47] You have to cling to what you know. Not with something. My mom told me when I had gotten out of a pretty dangerous situation and I was going through the grief process and starting to go through some pretty intensive therapy for complex PTSD. She said, you know what? You've got to clean to what, you know, And those moments where your mind is shutting off things.
When people are questioning you, when you're starting to doubt yourself, you doubt your doubts and you cling to what you know. So there were times I would go to my doctor and I would say, this is going on. And she'd be like, you have fibromyalgia. What do you expect? And I would say, no, this is not the fibro, but there's something else.
And then to go back after years of that, And take the information from the geneticist and the genetic counselor and say, guess what? I figured out what it was. I now know those were things with Ehlers-Danlos and for her to go, wow, I'm learning something new. I think, you know, we've got to realize that when people doubt us, when people say it's all in your head, when people say you're crazy, when people say, well, what do you expect?
Duh, it's easy for that to eat away and chip away at our desire to even do anything about it. But if we claim to what we know. Then it gives us that courage to keep taking that next step and keep taking that next step and digging a little deeper to discover more about ourselves and what those challenges really are.
Damaged Parents: [00:13:13] It's so true. I think it's so important and so hard because I bet it may have taken so long because. Cause you did believe and doubt and question. If you knew your own body.
Jules Journey with EDS: [00:13:29] Yeah. And there were so many things over the years that came into play that made it even harder for me to. Cling to what I know. I knew, you know, w as a kid I would have little ticks or things. And I had my mom, even at one point said, what are you doing? What what's is there something wrong? And so all of a sudden, then you go, Oh, shoot.
You know, I, I better not do that again. And so you try to hide it or mask it. And then going through a period where you're beating yourself up so much that you then start to battle with an eating disorder. So then that further erodes, that thought process of clinging to the truth, because then you're dealing with not only this history of this undiagnosed autism and ticks and whatnot.
Then you're dealing with you know, the eating disorder and body dysmorphia and all of that. And then you end up in a 10 year, domestic violence situation. And you've been gaslit for so long that you then start to question even the reality of what. You know, your mind and your body are telling you.
So it was, it was quite a process of getting finally to a place where I could sort through the fog and I could realize, okay, this is my reality. And this is what is real, and this is what I'm going to cling to. And this is what I'm not going to let go of, because this is part of who I am and my challenge and my journey.
And I've already decided to own it. And I'm not going to push it under the rug anymore.
Damaged Parents: [00:14:53] So it sounds like it took some time for you to feel confident. So not only for so long, had you been hiding, then you get into a situation where. It sounds like almost a lifelong of questioning your beliefs and what you know about yourself in any situation.
Jules Journey with EDS: [00:15:10] Absolutely. You know, when I was going through the process of discovering the autism, one of the pieces was to ask my parents about my childhood and growing up. And I had this incredible conversation with my mom and she said, I remember as early as kindergarten and first grade you coming home sobbing saying, mommy, I don't want to go back.
I'm not like the other kids. There's something wrong with me. There's something different. I don't fit in and I don't want to go back. So yeah, I mean, it started very, very young me questioning, everything about myself.
Damaged Parents: [00:15:43] Okay. So for those that are listening, that don't understand what complex PTSD is, autism and Ehlers-Danlos. Can you just walk us through what those things are and how they impact you so that maybe other people can have an aha moment?
Jules Journey with EDS: [00:16:00] Yeah, I think to start off with, just to explain that there's something called co-morbidities and that is when there are conditions that are often found together. They're not always found together, but they're often found together. And for me it was finding one piece of the puzzle that fit with the next.
It was one piece that led to the next to the next to the next, until I finally had the full picture and went aha myself. So the first piece would be the Ehlers Danlos syndrome and it's a genetic condition. It's a connective tissue disorder that affects all of your connective tissues.
There are different subtypes. So it's kind of like a spectrum and how it affects each person. I have something called hyper mobile Ehlers-Danlos and what that means is my connective tissues are not supportive the way they're supposed to be. So if you think about the extreme end of the spectrum, the contortionist in the circus.
They have Ehlers-Danlos. That is the only way that they are possible to do what they do. And it's because most people, their connective tissues having normal range of motion, ours don't are ours. Go beyond that safe point to where then we are. Hyperextending joints. We can have something called pots or postural orthostatic tachycardia syndrome where our heart just starts going crazy for no reason.
So with the Ehlers-Danlos not only are the joints not stable, but our connective tissues. Can be unstable as well. And that can cause all kinds of other problems and complications.
Damaged Parents: [00:17:34] In the body, right.
Jules Journey with EDS: [00:17:36] right, you think about your connective tissues. It's not just your ligaments and tendons.
It's not just your joints. Your skin is a connective tissue. The outer linings of your organs are connective tissues. Connected tissue is one thing that holds it to another. So, For me. When you think about the joints, I lost the normal curve in my neck, so that causes all kinds of crazy things with cervicogenic, headaches, and migraines, and a lot of joint pain.
It's caused my heart to suddenly start going crazy. I'll have a heart rate of 140 for no reason. It's one of those things where then when the doctors go in to do the specific testing, they'll come back and say, your heart is structurally fine. Your heart is fine. It is working correctly. And they have no idea what caused that.
It could be something as easy as changing position. It could be an air pressure change in elevation change. The slightest change can. Render me incapacitated for a while. Like the vertigo hits, I can't drive. I can't stand up. Then the nausea takes over it's it's quite the ordeal. And then to be told it's noninflammatory and it's non-progressive, so it's always been this way and it will always be this way.
There's no way to improve it or fix it or correct. It, was a genetic mutation that affected the proteins that. Made all of my connective tissues. So there was a defect in it. And so this is the result is that I will have this for the rest of my life. So you learned to manage it, but yeah, it's, kinda crazy.
Damaged Parents: [00:19:08] So I know that you said it, it sounded like you were relieved when the doctor told you what was going on. Was that in relation to the autism or the Ehlers-Danlos
Jules Journey with EDS: [00:19:17] So for me, there was a mental health piece. And for me, then there was a physical health piece and the two I could see going hand in hand my whole life. So when I discovered that Ehlers Danlos, it was like, now my life makes sense. Now I know why people would say, why are you always getting hurt so bad when you're so coordinated?
And so agile, you know what? It doesn't make sense. So then the Ehlers-Danlos piece came in and I went, Oh, now that all makes sense. Now I know then you take the autism piece and that was the piece that made the rest of my life. Make sense. Now I know why I didn't have a lot of strong friendships growing up now.
I know why I felt so awkward all the time. Why I didn't. Fit in why certain things that seemed so simple to everybody else seems so hard to me. That's why I was able to notice things and put things together that nobody else saw or was able to. It was, you know, when you have all of these things growing up, you feel crazy.
You're like, Why do I miss the most basic things, but then I can make connections between the most complex ideas or situations and have people go, wow, you're really smart. But then to feel so dumb because I don't even get the most basic of concepts. It was that one piece that made everything go, Oh, Okay.
And it all fit together and made my whole life make sense. And then you talk about the complex PTSD and how, when you have something like autism, especially for women, it makes women far more vulnerable. The chances of them ending up being assaulted or in a violence. Situation type situation or dealing with eating disorders, et cetera, et cetera.
It greatly drastically increases the risk for women of having to deal with those things. Then it was like everything just fell in line. Everything made sense.
Damaged Parents: [00:21:12] Okay. So what does autism look like in you? Cause I know I I've loaded a bunch of questions early on. We got the alert. I think I have a really better understanding of Ehlers-Danlos, but I'm not certain about, you know, I have autism with my nephew and yet I think it probably presents differently in different people.
So what's your experience been? And what does that look like?
Jules Journey with EDS: [00:21:35] You're right. It does. It looks different. And in everybody, because there is a, they talk about the autism spectrum disorder. It really is a spectrum. And it's a spectrum of spectrums and that's what makes it so complicated. I think in one of my videos, I said, it's like playing where's Waldo on whatever Alice took that sent her to Wonderland.
That's how crazy and complex it is for some people to understand, because you've got the social piece and even within the social piece, there's a whole spectrum. Of how it can affect there is the mental, IQ or ability piece. And there's a full spectrum for me. The way it is affected me with the social part is that I struggle to understand social cues.
For example, I will notice the smallest little Twitch in the upper lip. Or even a slight eyebrow raise. I will notice the smallest slightest little difference in a facial expression, but I won't understand what that means. And so a lot of people assume that when I don't understand what I'm seeing, that I lack empathy, but that's not it at all.
I actually have so much that once somebody explains this is what that facial expression meant, this is what the person was thinking or feeling. Then it becomes this. Tsunami of emotion where I become overwhelmed because I become that. I feel that at a very deep, intense level and it can be very overwhelming to where then it just, my brain wants to shut down.
My feelings are overwhelmed and want to shut down. So with the social piece, I miss a lot of social cues, a close friend of mine when I finally opened up and said, I'm autistic. She was like, what? And I said, well, Yeah, I'm autistic. I struggle with, the social and some of these other things.
She goes, well, that makes sense. Now I know. She's like, I always wondered why every time we had get togethers at the house by you were always sitting off to the side. You were listening to the conversations you were present, but you weren't a part of it. I always wondered. She's like, now I know now I know why you sat off to the side.
It was because I didn't know what they were going to say. I didn't know how I was going to respond. I do a lot of scripting ahead of time. In fact, even though you and I have known each other forever in a day, I was dealing anxiety and panic before our interview, because I didn't know what exactly, what questions you were going to ask.
So I wasn't able to mentally and emotionally and physically script and prepare for this interview. And then sometimes when I do that, I overthink and then it's just one hot mess.
Damaged Parents: [00:24:04] I do. I overthink. So I totally get that.
Jules Journey with EDS: [00:24:07] Yeah, I do. And it's like being able to script is my lifeline it's to the point where I will cancel doctor's appointments.
Literally right before, because I start to have an anxiety attack because I don't know what's going to happen. I don't know what to say. I don't know what they're going to ask. It's this huge fear of, of not knowing how to handle it, going to the doctor. I'm like in my forties, it's not a new thing, but because I struggle so much with the social piece.
And not knowing, okay, what is appropriate? What is not? When I make eye contact with people, I am spending so much time in my head trying to figure out, okay, so how many seconds do I hold eye contact? Because I know I'm supposed to, I know if I don't look at them, they're going to be offended and I would never want to do anything to offend someone, but.
How long do I look before then I start to make them uncomfortable and feel like I'm some kind of crazy freak person who's staring them down. Eye contact is it, it feels like I'm looking through or into a person. And that feels like a very intimate thing. And I don't, want to do that. So I look off to the side.
I have a hard time making eye contact, but then, because I am so in my head about how long. To look at the person and then to look away. And then when I look at them, am I supposed to look at their eyes? Because then if I'm looking at their eyes, is that too deep, too much? Do I look at their nose? Do I look at their mouth?
Are they going to be weirded out that I'm looking at their mouth, but then I miss what they're saying? And then they ask a question. I'm like, I'm sorry, can you repeat that again?
Damaged Parents: [00:25:36] that would be really hard. And I think confusing too, because is there a right answer? I don't know. even for me, if I would have to think that much about a social connection, I just, that would be overwhelming.
Jules Journey with EDS: [00:25:52] It is it's overwhelming to the point where then I avoid so much, I would avoid. Going to any kind of social event. Even family gatherings were stressful for me. I had a lot of stomach issues as a kid. I think, I definitely think part of it was having celiac disease, which is another fun thing that I've dealt with since a kid.
But I think a lot of it was the anxiety piece of the impending social stressor that I literally stressed myself sick. And I remember lots of social gatherings, even church activities, where my parents were taking me home early because I had such a horrible, horrible stomach ache. Getting together with my aunts and uncles and cousins.
I would sit off to the side in the room with the adults. I mean, I have all these cousins my age and they're playing and doing all these fun things that I'm sitting in the room with the adults off to the side, listening, because. I'm too scared to go visit and hang out with my cousins because I don't even know what to do.
Like even playing pretend. That's another thing. We have a really hard time with imagination and pretend when it comes to art and music, I can be creative. Like you would not believe, but when it comes to imaginative play, Oh, I hated it. I had friends they'd want to play like princesses and unicorns and fairies and all this stuff and I'd be like, okay, how do I do this?
What do I say? Like even Barbies, I hated playing dolls and Barbies because I'd pick up the doll and I would spend all my time rearranging the furniture, putting on different outfits, changing the colors, but then when it came time to make the doll talk, I froze. I didn't know what to say. Like how do you make the Barbie walk?
How do you Move the arms. Like I just, I over-thought it and I would shut down and I just would avoid it because I didn't know what to do.
Damaged Parents: [00:27:40] That makes sense on a couple of different levels for me, because I think it would. When I hear you talking about your inability to recognize social cues, the kids would be rough and tumble. If you will busy, there's lots of running a lot going on at the same time. Whereas when you're sitting with adults as a child, usually there's not so much chaos.
Jules Journey with EDS: [00:28:05] And it's very simple, straightforward because my uncle was very much into finances. So then there was a stock talk and talk about finances and investing and business. That's very straightforward. And so it's easy for the autistic brain to grab a hold of that and process that. But when somebody asks us, and this is another piece of the autism and the way our brain thinks, for example, if somebody says, what do you think about that rose?
I don't know how to answer that. That seems like a very simple question. What do you think about the rose. Most people are going to say, you know, I like it, or, Oh, I don't even know. Most people are going to have an answer, but when somebody asks me that I'm thinking, okay, what, what do you mean? I spend so much time trying to understand the question.
Do you, are you asking me, what do I think about the color? Are you asking you? What do we think about the scent? The depth and color of the leaves, because I have something else called synesthesia and I'm able to see more colors than a normal person. So I'm, I look at the, even the leaves that I'm thinking, okay, I see multiple shades of green within this one plant.
So , are you asking me about that? Are you asking me, what do I think about that Rose in terms of, do I want one, would I plant one? Do I think about, you know, the, breed or the, this specific type of rose. Like, I don't understand the question. So by the time you've even finished asking me the question, I thought of 50 different ways that that question could go or meanings behind the question.
And I've thought of another hundred different ways to answer that and I'm stuck, frozen going. Okay. Which of those responses am I supposed to pick?
Damaged Parents: [00:29:37] In this moment.
Jules Journey with EDS: [00:29:37] Very overwhelming. Right? In this one moment, I spent a lot of time asking the people who are in my inner circle, who are with me when they ask me a simple question.
I said, okay, can you clarify, help me to understand the question? Are you asking me this, this, this, this, or this? And then a lot of times in disagreements or arguments that come up, that becomes an issue too, because someone will offer their opinion about something, you know, there's a problem, but by the time they offer their opinion, I'm giving my response.
It comes across. Like I have a closed mind that I'm, trying to force my thought or opinion. But in the reality of it is this I've already thought about. 20-30 different solutions to that problem. And in an instant, I've already seen all of the potentials of each of those solutions and where we might end up.
So I have deducted from all of that. This is probably our best route to go. So it's kind of funny. It's almost like the Avengers. Where Dr. Strange was like, no, I've seen all of it. And this is the only way we win. I feel like that a lot of times where people are looking at me going, like, you're telling me we need to do this, but you haven't even listened to me.
And so I get into a lot of trouble because it's not that I'm not listening. It's that I'm listening. But then my brain is processing 500 other things at the same time so that I can give the best, most accurate answer possible.
Damaged Parents: [00:30:59] Yeah. And I bet sometimes you probably solve a problem that maybe somebody didn't want solved. So your answer is the solution to the problem. Then maybe they just needed you to sit with them.
Jules Journey with EDS: [00:31:10] Yeah, I am learning. That's another thing I'm learning to be very clear. Not only do I ask for clarification on a question, which helps me in a huge way, but then to ask, okay. What do you need from me then? Cause I don't naturally understand that. Do you need me to listen? Do you need me to offer comfort? Do you need me to be a sounding board so that you can come up with the idea yourself?
Do you need me to offer some ideas or suggestions? So for me, I've had to learn how to ask for clarification on that question and then to respond right after with another question. Okay. So what do you need from me? How can I help you? Best. And then keep my mouth shut. So I don't, I don't like vomit 500 solutions and possible outcomes that my brain has already come up with.
Damaged Parents: [00:31:58] Oh my gosh. That's gotta be so challenging, especially when, I mean, my experience of you is that you genuinely love and care about the people around you. There's no doubt in my mind. So when you see them hurting to not say anything would be. Or give them the answer that you think you know, is best for them would be so hard.
Jules Journey with EDS: [00:32:20] The one thing that helps is me thinking about. And I know this sounds ironic and like, kind of cocky, but thinking about myself in those moments, because I am very empathetic and I, I love people like almost to a fault, love people so much that it's hard, but I have to think about, okay, so how do I learn best?
And a lot of times the answer is by grappling with whatever it is myself.
Damaged Parents: [00:32:49] Hold on. Did you just say grappling with whatever it is, whatever struggle did I pick up on that?
Jules Journey with EDS: [00:32:56] you definitely did. I think one of the. No parents wants to, for example, look at their kid struggling, right. But when you've got a baby or a toddler and they're learning to walk, if the parent holds onto their hands and guides them the entire time helps prevent them from falling. They don't learn to walk as well as if they have those challenges and they're fighting and they're grappling and they're learning how to pick themselves up every time they fall down and keep going, then they become these amazing little walkers and then suddenly you're going, Oh no, you know, now they're into it, everything.
But for me, it's those moments where I hit rock bottom. Then I really grappling with life's challenges and I'm really in that raw and vulnerable and difficult place that I learned the most in picking myself up and having an opportunity to clean to what I know to dust myself off, to straighten that crown and say, you know what, no matter how hellish this feels, no matter how hard this is.
I'm going to make it and to keep doing that. And so when I remember that it's in being allowed to struggle, that I learned the most, that I am able to take that step back and say, okay, how can I support you? And what do you need for me? Because ultimately that's what I need from others. When I'm going through that.
Damaged Parents: [00:34:15] Okay. So when you're in the midst of a struggle, I'm thinking you use those same questions, but you turn them on yourself.
Jules Journey with EDS: [00:34:22] Not I have, I have the tendency to throw my tantrums. When I get to that place, I want to kick and cry and sprain. I think a lot of us feel like that. Which is funny because I think as a kid, you look at adults and you think they got it all figured out, and then you get to be the adult. And you're like, I feel like the child, I have not gotten this figured out and I want to be that two year old on the floor right now, you know?
In, in being real with myself and saying, you know what, it's okay. I need that time. It's okay. It doesn't mean that there's something wrong with me or I'm a bad person, or I haven't got my crop together or, you know, I need help allowing yourself that time to inside, you know, internally of course not.
I'm not literally going to be on the floor. I mean, I have been on the floor crying, but.
Emotionally and mentally, right? Who have it? That's the thing. Like, we all have those moments where we are like in fetal position, on the floor, in bed, in the closet, you know, I've seen some women talking about, they're in the closet with a glass of wine and they're just like having that moment, we all get there, but to treat yourself with the same kindness and respect that you would treat your best friends.
Because if my best friend were going through with that and they were having that moment, I would let them have that moment and saying, okay, it's okay if I need that time to throw my emotional little tantrum to say, I hate this. I really hate this. And I don't like this and I don't want this anymore.
And then to let that subside to dust yourself off, regain your strength and go back at it go back into the battle.
I think if you don't take that time, you become battle weary. And then you lack the capacity to keep going.
Damaged Parents: [00:35:57] Yeah, you just reminded me of a quote I actually have right here. Uh, it's part of a quote, actually from a theater Rodas Roosevelt and says it's not the critic who counts. The credit belongs to the man who is actually in the arena whose face is marred by dust and sweat and blood. And it's there to remind me that I wouldn't be. Participating in the full extent of this human experience. If I didn't have moments like that, where. I felt like I was in the middle of an arena actually being watched. And I'm a total disasters mess, you know? I mean, that's just amazing. Okay. So we're rounding out almost. We're almost to the end. I would like a really good understanding if possible.
And I'm thinking the listeners might too on complex PTSD. What's different between. PTSD and complex or what makes it complex versus just, I guess, standard PTSD. I'm not certain how to ask that question.
Jules Journey with EDS: [00:36:58] Yeah. Yeah. It's, quite the, there's quite the difference. I guess to start off the best book that I read that helped me understand it was the body keeps score by Fissile Van der Kolk
anybody out there who's had a history of trauma and abuse. I highly highly recommend that book
Damaged Parents: [00:37:17] I'm going to put a caveat on that. I want to say the first 40% is extremely difficult to read. Not that it's not worth reading. It is extremely difficult and take your time. It's okay. It can also be triggering, just heads up
Jules Journey with EDS: [00:37:33] it can be extremely triggering. In fact, when I picked it up, there were days where I had to read one page and I had to set it down and then I had to go do something to put myself in a better place. Because in a lot of ways, it's kind of reopening some of those trauma wounds. And not that you want to do that on the fly or all the time, but it helped me and learning to understand what it was.
I went through the depth of what I went through and how profoundly it affected me. The difference between simple PTSD and complex PTSD is simple PTSD happens from a one-time event. For example, a bad car accident. You think about the Boston marathon bombing. That was an event. So if your PTSD arises from a, an event that's PTSD.
If it happens repeatedly over the course of a period of time, it becomes complex PTSD in the nature of how it affects you. I was in this book, he talks about how, for example, domestic violence survivors, the effect that, that trauma and that abuse has on them is the equivalent to a prisoner of war or a concentration camp survivor.
And when I first read that, I was like, no way. No way I didn't go through what they did, but when he starts to break it down, then I went, Oh my gosh, he's right. He's right. It has affected everything from the way I think about myself to the way I see the world to the way I see reality. And I, as I started learning how to separate the trauma.
From reality, it made the biggest difference. And so you are, absolutely right. That first section that was really hard, but when you stick with it, then you find the hope. I think that first part for me was very discouraging in realizing The effect that it had on me. And then you kind of start to think, Oh my goodness, that despair or that frustration kicks in, but then you get into that next piece where it talks about, but even though you can still, conquer those demons, you can still heal.
You can still have this full, rich, incredible, vibrant life, in spite of what you've been through. And these are the tools and the resources and the ways in which you can do that.
Damaged Parents: [00:39:49] Yeah, for me, it was really hard, not the traumas I experienced, but, it was really hard recognizing. All these other traumas were even possible, which is why it made it so hard to read because some of them were just mouth dropping devastating and, I couldn't believe it. I just could and so for me, I had to take time.
For that. But anyway, so you're saying that like a simple PTSD is, more like an event and it's not a trauma that consistently occurs over time. So because it consistently occurred over time, it becomes a complex drama, trauma, not drama.
So when you go to try and heal from something that's complex versus simple, I'm thinking there's different tools.
Jules Journey with EDS: [00:40:43] Yeah, there are. And as a lot of research has shown and discovered that simply talking about the trauma is not healing. In a lot of ways it can be retraumatizing. I think it's important for us to have those open, vulnerable conversations because people need to know that the trauma they've been through that it's okay.
And the way it's affected them, that that's normal and that's okay. When I first. Got out of that situation. I had a phone call with my aunt and she said, you know what? You need to know that what you're going through is normal. And you need to know what's coming because you're going to feel crazy.
You're growing up. Your brain is going to do some crazy, weird things to try to protect you because your brain loves you and wants to keep you safe. And this is what's going to happen. And I am so grateful. I had that conversation with her because had I not, I wouldn't have understood why my brain was doing what it was, why my body was reacting the way it was.
And so the tools and healing from complex PTSD, I mean, it's a process you think about it. Like it's gonna take time one because the trauma occurred over time. But it affects your body. And so you're going to have to learn how to do some body work, how to get back in touch with your body and what it's telling you.
And that is terrifying. That is terrifying for a lot of trauma survivors.
Damaged Parents: [00:42:00] Yeah. when you say getting back in touch with your body and what it's trying to tell you, are you talking about like the physical manifestation of the emotion and what the emotion feels like and how to interpret that? Or what are you talking about?
Jules Journey with EDS: [00:42:11] It could be that it could be something as simple as hunger. Even learning how to recognize hunger pains, because when you're in survival mode, you shut down so much. The pain of being in a trauma is almost suffocating at times, to where you disconnect mentally, emotionally, physically, you disconnect in so many ways just to try to survive that reconnecting with your body.
It's not only the emotional manifestations, but it can be something even as simple as, Oh, okay. I am starting to feel hungry now. I should eat to take care of my body because in the process of shutting that down, you sometimes have this tendency to want to even inflict more pain. You want to almost discipline your body.
For having those feelings, those sensations, you want to block it out because any feeling at that point is overwhelming. So when you're getting back, in touch with your body. It's okay. I feel tired. Why do I feel tired? Okay. I'm feeling a little emotionally out of sorts. Okay. My head is hurting.
Am I hungry tired. Stressed. Is this an emotional headache? Is this a physical headache? Okay. How do I recognize the hunger pains? It's a such a complex thing, but simple at the same time, you know, it's, getting in touch with every part of your body
Damaged Parents: [00:43:33] And trying to understand it.
Jules Journey with EDS: [00:43:35] It's takes time.
You gotta be patient with yourself as you're learning to do that. Yeah. There were times where I would, I realized I was holding my breath even, and I couldn't remember the last time I took a breath, but I was feeling lightheaded, and reminded myself. Okay. It's okay to breathe. Even just simple things as simple as breathing, being to, to recognize, okay, it's okay to breathe. I can breathe. Breathing is a good thing. Oxygen is kind of needed,
Damaged Parents: [00:44:00] Yeah. And I'm assuming that you have done a lot of that work so that you can understand yourself. And I'm thinking about re triggering. I mean, do you ever find yourself back in. Almost thinking you're in those moments, even though you're not, I don't know if that's the right way to word that. I'm just trying to understand if those feelings come back and all of a sudden, even though you're in a safe environment, maybe it's something triggered it and now it doesn't matter.
Who's around, they're going to receive the brunt of that experience because you. You don't recognize it until it's too late and just throwing ideas
Jules Journey with EDS: [00:44:38] Fun thing is I have complex PTSD triggers, trauma triggers. It's a situation where, you know, at the beginning of the healing process. Yeah, absolutely. That's going to happen. Something's going to trigger you. And a lot of times the triggers won't make sense and there'll be times where you won't even be able to figure out what the trigger was.
And then you just have this reaction. It's almost a subconscious thing that it just kind of happens. But as you start working through the process, you can get to a place where. You see the trigger? And it starts to affect you. And you're able to say, okay, wait a minute. I'm going to take a step back and I'm going to sit with this and I'm going to process it and I'm going to let it go.
My sister gave a really good example of what this looks like. She says, we grew up in Hawaii. We grew up near the ocean. She goes, when you take your board out into the water, the waves, they're going to hit you. Right. And some of those waves are going to get stronger and stronger. And if you stand in that water and you hold your board up and you're trying to block the waves because you don't want to be hit by them, it's going to knock you down every single time you're gonna get knocked flat.
She goes, Mel, you've got to learn to put the board down. She goes, when you put the board down, how do you, how do you survive the waves? Then? I said, well, you turn your body sideways. You dig your feet in the sand, you plant yourself, you turn your body sideways, you look at the waves and you just let them roll past.
And she goes, and then when it happens and I said, at the end of it, you're still standing. So as you work through this trauma healing process and you learn to do the body work and you start journaling and you start using that other part of your brain and you start writing it down, you get to a place where you feel safe enough that you can.
Not become the waves or the storm, but you can dig your feet in. You can find that place to be still. And there are still times where I will have to go find that in another room or in the backyard, or I will have to get in my car and go drive somewhere. That is soothing. For me because of the autism, anything repetitive as soothing.
So I'll put in earbuds and I'll go for a run and I'll have a song on as loud as I can get it on repeat or I'll go watch a waterfall. Cause it's that constant motion of water and sound. And I plant my feet. I turn my body and I let it roll past. You got to sit with it. You got to let it roll pass because as a complex trauma or a complex PTSD survivor, that is part of your life now.
It's like going through a massive traumatizing surgery. That scar will be there. You can't not have it there, right. It will always be there, but you can. You can use it and it becomes a strength. I know that's kind of an ironic thought that your biggest, hardest, most, heart-wrenching traumas, the things that broke you, that made you hurt in places you didn't even realize could hurt, could become the source of your greatest strength.
If you can learn to plant your feet and let it roll past, but it has, it has been an absolutely transformative, incredible experience.
Damaged Parents: [00:47:41] Yeah, that's a great visual tool. Okay. Three tips or tools that you want listeners to know or walk away with from listening to your story.
Jules Journey with EDS: [00:47:52] You know, it's funny you say that because the very first thing that came to my mind are my tattoos. And I tattooed these words onto my arm to remind me, and they are three words, truth, courage, and warrior. Because when I come to understand and accept the truth and own it and embrace it, then it gives me the courage to keep going.
So I can become the warrior. I was always meant to be.
Damaged Parents: [00:48:15] I love that. Thank you so much, Jules. I'm so glad I had you on the show today.
Jules Journey with EDS: [00:48:21] Thank you. I have, enjoyed the conversation. I love being able to share my story and connect with others and it's. And, you know, I just love you to pieces. It's been, it's been a wild ride and I have really, I really have come to appreciate those incredible people that have been a part of this journey in this process with me.
Damaged Parents: [00:48:40] Yeah. Hasn't it been?
Thank you for listening to this week's episode of Relatively Damaged by Damaged Parents. We really enjoyed talking to Jules Journey with EDS about how she spent a lot of time observing and learning how to participate in a world not made for her specific challenges. We especially liked when she taught us how we don't have to become the waves or the storm, but we can plant our feet and stand strong.
To unite with other damaged people, connect with us on Tik TOK. Look for damaged parents.
We'll be here next week still relatively damaged see you then.
