PODCAST INTRO: Hey, beautiful soul, and welcome to Dear Body, I'm Listening, the podcast for women living with chronic pain, mysterious symptoms and invisible illness. I am your host, Donna Piper, movement therapist, pilates instructor and chronic illness navigator. The space is for the ones who've tried everything, felt dismissed and are still searching for answers. If you've ever felt like your body's speaking a language no one else understands, you are not crazy, and you are not alone. Here we go beyond diagnosis and let you know what diagnosis you try to seek. We talk about swelling, fatigue, brain fog, body shame, nothing is off the table. We explore healing through somatic spirituality, movement and truth telling, because healing isn't linear, and either are we.
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Donna Piper: Hey, beautiful soul, welcome back to Dear body, I'm listening. Today, we're starting a four part series on trauma and pain. This one is close to my heart, because it's both my love story and my professional work. Before I was teaching Pilates, before I was coaching women with chronic illness, and before I was coaching women with their relationship issues, I was a dance movement psychotherapist. My master's thesis focused on PTSD with Vietnam veterans, and I went on to work with trauma patients at Cornell interventions in Englewood, Illinois. I even flew to New York City right after 9/11 with a colleague. We spent 10 days at the Plaza doing trauma therapy with families and survivors from the terrorist attack on the second tower. That experience just reinforced how trauma is lived, also personally and collectively. And it doesn't just live in the mind, it shows up in the body. And that was what my training and dance movement psychotherapy was all about, how the body works.
I did extensive training on everything from in utero to living in the body, and all the different sorts of developmental tasks the body goes through, and also the psychological theories, everything from Freudian to cognitive behavior therapy, and everything in between. And it really is the key to help with releasing trauma and live in your body, your mind, your emotions. And nothing is separate. And I believe that from the beginning, and that's why 25 years ago I got into this field, and I specifically sought out that masters. So it was a three year program, including a thesis and a defense of your clinical work. So it just reinforced every time I used it and practiced it, that the way people sat, the way they breathe, everything in their movements held a story, told the story, and you didn't have to understand. There didn't have to be a mental understanding and intellectual understanding to release and heal trauma. Sometimes, it's even better not to talk about it is just to move your way through it. Because I knew early on that the body carried the secrets the mind couldn't always speak. But what I didn't know is how much my own body had been carrying.
So here's our real talk recap this week, and it's my truth. I've been living with pain since I was seven years old. That's when the migraine started. Imagine being a little girl who just wants to dance, to move, to play with her friends. And instead, some days, you were just curled up in the dark, head pounding so hard that you felt like you might explode. That was me. I learned to lie perfectly still. Have a cold compress on visualizations. This was the 70s when this started happening, late 70s, and there wasn't all the information we have now. There wasn't even medication for migraines, especially for little kids. So I got all the tests to see if it was cancer or whatever they thought at the time. But it was really migraines, and those migraines trained me early in having big pain tolerance. So when I couldn't go to school or I couldn't go do something, the pain was so bad. Many times, I had pushed through the pain, making me vomit. It was awful. I never wished migraine pain on anyone.
I also learned to tough it out to keep going and to push through. And I thought that that was strength, and that was my only option, really, if I wanted to continue to be mainly present in my life. Sometimes, I just had to push through it. If a test landed on a migraine day, I couldn't just skip it. Same with when I started working. I couldn't just call in all the time because I had a migraine, or I didn't think that I could, and I needed to learn to function within the pain. But that really gave me a very distorted sense of what pain is, and it really started to push me away from my own body sensations. And because this was all about survival, and it was that survival pattern, ignoring what my body was screaming became my default setting.
So years later when I started to have symptoms that are now classified as POTS, which I always knew that I had, my mother would have it, but it was never really enough when I went to the doctor to tell them my symptoms. Same with hypermobility and EDS. I went to tons of doctors as a kid and an adult, and no one ever correlated those two together. Same with mast cell activation syndrome. I always had a sensitive tummy, and I would have reactions to smells. So many different things that would happen, and still, no one that I saw had the knowledge to connect those things. And when my legs started aching, the weight never really left my legs even after all the dancing I did 8, 10 hours a day. Very clean eating that I always have done since my whole life, my body shape was never that of a typical dancer. And when my legs ached, or they had real feelings, or they would get bruised randomly, I just never thought about it. I just ignored it. And then when I would become exhausted after doing some of the smallest things, and when I felt like, oh, God, I just don't understand why I'm so crushingly tired. I really just thought about how life is. You do a lot, and then you crash.. I didn't question it. I assumed this was normal.
This was me looking back. The signs were everywhere. Hypermobility and joint pain was brushed off. Chronic Teague, I don't even know if they had it then. But definitely in my 20s and 30s, I'd heard of it. It was really just kind of brushed off as a rule, everything out, and I think it still is. Luckily, we just got a study done in Edinburgh that really says that, yes, chronic fatigue has a brain issue component where your body still believes it is sick, so it is shutting down your system in order to have you heal, even when the virus isn't present anymore. The gut pain and the bloating, they were really tied to my MCAS and lipedema, inflammation, constipation that I always had was really dysautonomia and chronic fatigue slowing my motility. I also had a pattern of strep throat as a child, which is now being linked to Epstein-Barr Virus, which is kind of similar to fibromyalgia.
Epstein Barr and chronic fatigue aren't the same thing, but they kind of live in the same little space. So who knows? The chronic strep throat could have been driving a lot of these things for me to get in a state where it really feels like I'm not able to function fully in my life. And because of the high pain tolerance, because I trained myself not to listen to push through, I missed the red flags. Honestly, half of the symptoms that I've just lived with, I never even really knew there were symptoms. I don't always recognize it. Even now, like, oh, that thing is associated with hypermobility, or I've done too much. So it's really a relearning, learning and an unlearning of everything that I thought I knew to really make sure that I'm aware that I'm treating all of my illnesses in a way that is going to benefit me, and where it's going to be helpful other than hindering. All of this is to say that until my body really, really broke. I gained all this weight in a short amount of time, and I couldn't function. And everything I did, it just never got better. Anything that I tried to do to help myself, it made it worse.
I had to face the truth that there's something I was missing. I got the answer finally after searching about the medical condition, but I also needed to, and I have been working on listening to the hard truth that my body just wasn't tired. It just wasn't these things that were happening to me. I was also carrying trauma from whenever it happened, but trauma of not being listened to, of pushing through emotional trauma, of having to pull back from friends, or not feeling like I'm accomplishing enough or failing. Especially in my marriage. Not being able to do the things that I want to do, take care of my house, cook, have these things. So feeling let down as a partner as well. So all of this has contributed to the trauma, and I have to really figure out if there's a significant traumatic event, or a significant distressing event? That's how I've always named trauma in my life.
And with my patient, it doesn't have to be a big thing that came down. There are people that definitely get abused sexually, physically, emotionally, they've had accidents. Or they've had something where you could see that, okay, that's a clear trauma. But a significant, distressing event is something that your body holds on to, and creates trauma. So it creates that sympathetic system. And if it never down regulates, so you have a nice regulation between parasympathetic and sympathetic, then your body's living in this traumatic state. And even though I have seen it with my clients, I've seen them change 100%. When I was looking at myself, I thought I was doing things that were self care. I worked with my own counselors and my own supervisors, and still, things were missed or not gone to the core.
And this is where my story takes a twist. Long before I had the words like lipedema, chronic fatigue, EDS, MCAS, POTS in my vocabulary, I went through and got my master's degree in dance movement therapy. Why? Because I knew deep down that the body was holding the secrets to healing. Even in my undergrad when I took dance as my major, because that's the thing I knew the least amount. One of my projects was to work with children and the children's behavioral services. So basically, they were in a foster care system, and they were older, and had some learning and physical issues. So we did a dance program just simply doing a jazz class, and to see how they can express themselves. And the results of that were just positive. That was my own little study of what I wanted to do before I really entered into the world of dance movement therapy, and that moving is medicine. There's something with moving that you don't need to know why or how it relates to your emotions or trauma. But really, just the fact of moving, even taking a dance class, which unfortunately my go to that space has not been where I could go because of the lipedema, the chronic fatigue, the severity of the POTS, and the severity of the MCAS and hypermobility.
As a child when I look back, I had already tried to think my way out of my feelings. I was very logical. If anyone's into astrology, I blame it for being the Aquarius moon. I have a lot of Aquarius and Sagittarius in my charts. But I was very smart, analytical, and a problem solver. So I really figured I could think my way out of things. But no matter how much I tried to logic my way out of pain, it never worked. My body was always carrying this truth, and I just either didn't know the signs. Or for whatever reason, this is my path now. So as I dove into movement psychotherapy and studied post traumatic stress disorder, spent years learning how trauma shows up in posture, breath, movement patterns, how it's released with those things as well, not necessarily having to put a story to them, but honoring the space that comes up even with you just breathe. And honestly, I'm very good at it. Very good at what I do. And I watched my clients with PTSD reclaim safety, release tension, and rewrite their stories through movement. And it's very powerful.
But here's what I didn't do. I didn't apply the same lens to myself fully, or I somehow hid it from myself, hoping that maybe my blind spots would come up with my other practitioners. It just didn't happen for me. And even though I looked at my migraines, my fatigue, swelling, gut pain, all of that, I didn't really look at it like I have a trauma story, and I haven't really figured out what that is, or how to start to heal that I need to find a different modality. Because sometimes when you know things, I have a lot of shame about things like, if I know so much, why haven't I been able to apply it to myself. And B, sometimes when you know some stuff, if your body's not really feeling safe enough to deal with it, you're gonna like, I think I'm sneakily, not intentionally. But really working away around all of these things, so that even if I did present with my counselors and my supervisors, I didn't present it in a way that was like, okay, I really need to work here, because I'm sure my body is protecting itself. So your body always protects yourself. So that's the thing with the sympathetic nervous system.
Emotionally, mentally, physically, your whole body is always just trying to keep you alive. So your body does things in order to do that, which I'm very grateful for. But now, I really need to connect those dots, and let the embarrassment just be a part of the story, not stopping me from looking deeper. And you know that embarrassment is like, how can I help other people heal their trauma, but not heal myself? And I do know the answer is that it doesn't. Healing happens with others. So even when I was a counselor and a psychotherapist, even with coaching, it's not so much the modality that you use. They've done studies about like, so what's the most effective modality to use and in therapy, just in general,. It's never like CBT is better than this, and that there's things that the insurance company will pay for. But it doesn't mean that the modalities are better. It's the practitioner, and it's the relationship with the person seeking help, and the person being the helper. Quote, unquote, it's that relationship that's the transference and the counter transference within that that actually does the healing more so than the modality.
So if you're out there with an invisible illness, with chronic fatigue, with any of these things, the tendency is to not want to be a burden to do more. And there's also a tendency to not talk about it. Feel like you don't fit into the medical system. You haven't been getting accurate diagnosis, you have been brushed off. So you talk less about that because of the shame, or with people well intentioned to try to give you tips on it that maybe you haven't thought of. But I'm sure if you have gone through this, you've run the whole gamut. Really, there's probably nothing that you haven't tried. So that also makes you want to pull back because you haven't found medical professionals or professionals to really help you. So that's another thing where you pull in, and I know I have through the years, not only because I thought I should know how to do this. But when I did reach out for help in the medical field, I was always brushed off that it was something else.
I'm sure you've heard it by now, trauma and trauma recovery, and trauma help is trauma informed. It's like trauma, trauma, trauma. We all have a series of things. No one goes through their childhood unscathed. Even with the best parents, we all have things that have given us a way where we feel we need to have behaviors and emotions unconsciously to defend ourselves and to keep ourselves alive. And what this does is lives in your tissue. So let's break this down. The connective tissue is the scaffolding of the body, their tendons, ligaments, cartilage, fat and fascia. And if you have lipedema, hypermobility issue, the whole spectrum from just being hyper mobile to hyper mobile syndrome disorder, or spectrum disorder, or EDS, and even with MCAS, that has a lot to do with your connective tissue disorders. Also, POTS is in there as well. And you can argue that because of those things, because they're all related, that chronic fatigue is in that same category. It's not always a direct connective tissue disorder, but most of these people have some of those things as well. So there is a loose connection. So there you go with all of that scaffolding.
Even if you don't have any emotions or any other things going on, the fact that your body is always trying to figure out how to work with connective tissue isn't normative, as they call it, so it doesn't respond. Your body's starting to fight and do some extra things to help yourself out just by breathing, moving, going to the bathroom, etcetera. And so fascia, it's a continuous web of connective tissue that wraps around every muscle, bone, nerve and organ. This was once dismissed as just packing material. We now know that fascia is alive. It has nerves, blood flow, and even immune cells. So both of those things together. And if you have any of these illnesses, these two are main components in trauma and healing, and they're also the things that are not the best. They're not normative. They behave differently than others, and then in bodies that don't have connective tissue disorders. So when trauma happens and doesn't get discharged, fascia reacts. It tightens, hardens and knots up, and that restriction can last for years, and even decades. And because fascia is full of atomic nerve fibers, the same nerve fibers that govern fight or flight, a tight fascia keeps telling your brain that you're not safe.
When we're not safe, our body responds to get our sympathetic nervous system up, ready and geared. That's mast cells on board. Those are immunity. So everything. Your whole body, unbeknownst to you, has been waging this war in this fight when maybe it's just something simple as you've over stretched your tendon and that led to a flare, which led to your body saying, hey, we don't feel safe. So the body really needs to feel safe for any trauma work, for anything to really happen. Actually, we think we can force our way through, but all that really does is create more defenses in a way. They're not negative. Your body just wants to survive. So when it feels unsafe, it's going to do whatever it needs to feel safe. And tight fascia, again, keeps telling your brain that you're not safe. That's why trauma survivors also feel stiff, braced or in chronic pain. So in general, with trauma, you don't have to have these specific things. They don't know exactly.
There's more research done in EDS and even POTS. There's more information coming out of the mass cell. There's limited research. There's more anecdotal, but major research that needs to happen with lipedema isn't really there, and same with chronic fatigue. So they all seem that there's a genetic predisposition. So even if you have EDS, then you have to have a genetic test. Maybe you don't have full blown EDS, but there's 13 subcategories, and then there's also a spectrum disorder, and there's also hypermobility. If you have any of these, you have some collagen issue, and so you have some connective tissue issue, you have some fashion issue. On some scale, whether it's 100 or two, your body is dealing with this unbeknownst to you just by being alive. When this tissue itself is signaling danger, fascia just doesn't wrap muscles, it wraps your organs. That's called visceral fascia. So when trauma or stress chokes that fascia, you get gut pain, bloating, constipation, diarrhea. You can also get things, in my case, where I have a central lymphatic issue. So of all the things I've done clearing all the limps and doing all this work, I technically should feel amazing now. There should be progress where, in my case, I still have had issues with my belly being swollen, so things are not moving as they should. It could just be a lot of fascia constriction around.
Get Leslyn Keith's book on the lymphatic system, and I'll link it down below if you want to know more about it. And follow or take courses with Dr. Perry Nickelston. I can always mess up his name, but I'll leave a link below. He has Stop Chasing Pain in his courses. He goes deeper into this. But basically, all of these things that I have are the gut pain, the bloating, and then the flaring are from MC/MCAS and the lipedema, inflammation and my central lymphatics not working and being clogged in my chest, also constipation, which I have for years, which adds to the bloating. That's a dysautonomia from the chronic fatigue, POTS and hypermobility, and that slows your guts mobility. Also, if you have any pelvic function disorder. So then, that also is a prolapse, either in your colon. If you're a woman, in your uterine area.
So as men, they could still have a prolapse, so there's all of that as well going on. And so mine is chronic. Obviously, I'm in my 50s, 54. I've had these for decades so it's not just brand new. So if you're younger and listening to this, hopefully, any of these symptoms click and be like, okay, I'm going to start figuring out what this is. Try to get a diagnosis and help right away so you don't have to suffer decades. Or it goes so long that you have more complications. Because of the sheer amount of time and the heavy sluggish exhaustion that comes from not just illness and having these viruses, but also my fascia screaming again. We're not safe. I talk about this a lot when I do one on one work. I have even been in relationships and forever. So that's kind of always like, safety first, really is a thing I teach. Now, I just have to figure out how it looks in my body. So when people say trauma is just in your head, or people have used their trauma, unfortunately, to get other people how to respond to them. But your trauma is your own, no matter how it comes to being. Whether it is something really horrific, like abuse, or if it's something that's distressed, once it's in your body, it is your responsibility to take care of it solely.
I have seen it time and time again with my patients or clients that healing, feeling safe and healing, it changes their demeanor, their outlook, and actually makes your system feel more alive. So when they say it's in your head, when they say this about your illness, no, your illness is also in your fascia, and trauma is in your fascia. And because we have illnesses that relate, correlate directly to connective tissue and fascia, there is some trauma in there. That doesn't mean that trauma is bad or it just means that, okay, there's again, safety. It is in your connective tissue. It's in your gut, your joints, your nervous system, your immune system.
And here's the really helpful part of all this, that it's just as trauma rewrites pain, healing can rewrite safety. So both things can happen. It's not that this is a life sentence. There's many things you can do in order to rewrite your pain and actually rewrite your story so you feel safe, and then your healing can begin. That doesn't mean that. I don't think it's going to take everything away. You have connective tissue. Your body has connective tissue issues, right? So you're always going to have to live with them, but you can substantially reduce your symptomology, and increase your well being. And the joy that life is supposed to have, you can start to have that when you also address this part of it. And sometimes, just even knowing that that's part of the response, trauma is built into it. So we're going to talk later on in the next few episodes about this, but just really getting that understanding is just from the jump. Your body has had to create extra precautions in order to be safe. I kind of went through my story, and also into the educational component of this at the same time.
Let's get into busting some myths. Let's bust this myth that healing happens alone. No. Healing doesn't happen in isolations. Us humans are wired for relationships. We need witnesses, mirrors and others to really kind of be like, okay, do I feel safe? I'm in the situation, and there's no danger. My system knows, and is retraining itself that this is safe. So even with everything we do, it's retraining to find safety. And yet, when you live with chronic illness, it's very easy to isolate. You do cancel plans because you have to, and you need to because you need rest. You don't feel good, and you don't want to explain yourself to people again, especially if people don't understand. Most people don't. They don't really understand tiredness, and they don't understand pain. Especially if you don't look like you're in pain, they don't understand that. So there's so many things that they don't understand with this, so it does get exhausting. You do usually have walls of defensiveness that get higher and higher until it just feels safer to be alone. But isolation isn't a cure. You do need to rest, but there is this component where you definitely need someone or community.
Even just listening to this podcast, and that's why I'm doing it, that you're really not alone. Everything that you're doing is valid, and that can just be like, okay, just knowing this information sometimes can make your whole system feel like, okay, I'm not on the outskirts. This is just me, and all these things that are happening to me are making me feel crazy. There's a ton of other women that are going through the same thing. We just need to create a system where you can get into, where you can be seen and heard, and given valid treatment options so your system feels even safer. And just like trauma rewrites pain, it also is the opposite. When you feel safe, embodied, and in a compassionate relationship really with yourself, you can rewrite your story for safety.
So let's end with a feel good flow today. That's just a simple fascial release together. So it's very easy. You just want to start in a comfortable position, and roll your shoulders slowly. Slowly back three times, then forward three times. Then shake your arms gently, like you're shaking off water, and let your wrists and fingers flop. Close your eyes if you can. Take a slow inhale. And as you exhale, imagine your fascia, that connective web softening like fabric being smoothed, and whisper to yourself, I am safe, I belong. And even if you get this mantra of, I'm safe and I belong, just think about it throughout the day. That is very powerful as well to keep telling your system when you are in a safe place that you are safe.
So here's the takeaway from part one, trauma doesn't just live in the memories. It lives in your tissues, in the fascia, in the connective tissue and the gut, and the way we brace ourselves, and also have pain or experience aching. And once you're aware of that, everything can change. This is why these things are happening. And then you can do some internal work to see what you need to do to feel safe. Because if trauma can be stored, it can also be released. And in part two, we're going to go deeper into the nervous system. How trauma rewires fight or flight? Why might your pain dial be stuck on high? And if today's episode resonated, share it with a friend who's been told their pain is all in their head. And don't forget to follow me at the Donna Piper for more ways to move, heal and belong in your body. Until next time. Remember that you're not broken, you're not lazy. There's nothing wrong with you. Your body has just been carrying stories, and these stories can be rewritten. So thank you.
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PODCAST OUTRO: If this episode made you feel even a little more seen, brought you a dose of clarity or pointed you toward your next step, please rate, review and share it with someone who's been quietly carrying the same questions. You can find some more resources, blog posts and healing tools over at donnapiper.com. Don't forget to subscribe so you never miss an episode. Until next time, Dear Body, I'm listening, and I am so glad you're here.
