ICU – “I SEE YOU” PODCAST
Vestibular Disorders Affect on Your Personal Relationships
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In the newest episode of the ICU – “I See You” podcast, guests Jen Warner and Joy Mohr join the hosts to discuss how having a vestibular disorder affects personal relationships. It can be hard to relate to another person’s experience. This is especially true for people struggling with vestibular impairment because the symptoms are invisible and unpredictable. But, these disorders affect not only the people who are afflicted but their families as well. This episode discusses how to educate others about our experience and communicate our needs.
This podcast is a co-production of the Vestibular Disorders Association (VeDA) and Unfixed Media.
ABOUT THE GUESTS
Melinda Reed worked as an Occupational Therapist for thirty five years mostly in pediatrics. She was very active all her life with activities like hiking, biking, running and kayaking. In 2016 she was painting a ceiling for the better part of a day, and the following day woke with a very stiff neck and resulting positional vertigo. She continues to have episodic dizziness as well as neck pain, however, she keeps busy doing the activities she did in the past despite the dizziness. 3 years ago, she retired as an Occupational Therapist, but is also an artist and writer, as well as a part time real estate agent.
Dr. Yonit Arthur, AuD (or “Dr. Yo”) is a board-certified audiologist, vestibular specialist, and mindbody coach who specializes in helping people with chronic, medically unexplained dizziness and other vestibular symptoms. As part of her commitment to helping as many people around the world as possible via free and low cost education, Dr. Yo has a YouTube channel and podcast called, The Steady Coach, and offers a completely free, comprehensive course to anyone suffering from chronic dizziness symptoms. You can learn more about her work on her website, https://thesteadycoach.com.
Hosts:
Cynthia Ryan, Executive Director of the Vestibular Disorders Association (VeDA) https://vestibular.org/
Kimberly Warner, Founder and Director of Unfixed Media https://unfixedmedia.com/
This podcast is a co-production of the Vestibular Disorders Association (VeDA) and Unfixed Media.
TRANSCRIPT
VeDA uses otter.ai to create machine-generated transcripts. This transcript may contain errors.
Cynthia Ryan
Welcome to the ICU Podcast where we explore the vestibular experience through conversations between patients and the health professionals who care for them.
Kimberly Warner – Unfixed Media
During this podcast, we invite patients to share their stories and healthcare professionals to ask questions, so they are equipped to better care for and truly see the invisible challenges faced by their patients. I’m Kimberly Warner. And
Cynthia Ryan
I’m Cynthia Ryan, and we are your hosts on this journey of discovery.
Kimberly Warner – Unfixed Media
Welcome, everyone to the ICU podcast. This is a really important episode we have for you today, we’re going to dive into how having a vestibular disorder affects personal relationships. And we all know that they do. We know that it can be hard to relate to another person’s experience. This is especially true for people struggling with vestibular impairment because a it’s invisible. B sometimes the symptoms come and go and see it’s really difficult to explain what it feels like. Above all we want understanding compassion, empathy from our loved ones, but instead we often feel isolated. Vestibular Disorders affect not only the people who are afflicted but their families as well. And part of our recovery process involves learning how to educate others about our experience and communicate our needs. So today we have two fabulous guests. I’m going to introduce our first guest, Joy Moore. Some of you may know her from life rebalance Chronicles Actually, her episode hasn’t come out yet, so nevermind, she will be coming out this year. Joy’s nightmare began in March 2018 After a family vacation on a cruise ship. After a week of being home. She knew something was wrong. When her land legs didn’t return and she was beyond exhausted. As a health care provider herself she researched the possibilities and started making appointments with Auntie’s neurologists. She had a list of working diagnosis for over a year and saw many specialists before she was able to get definitive answers. She was finally diagnosed with MdDS. During the first year, increasing stress led to the singular migraines, tinnitus hyperacusis. Her MdDS symptoms now wax and wane and on any given day, she falls somewhere on the MdDS PPP de Loup, depending on the weather and personal activities, welcome, Joy. We’re so happy to have you here with us.
Joy Mohr
Thank you.
Cynthia Ryan
And I would like to introduce Jennifer or Jen Warner, who is a clinical social worker and psychotherapist with advanced training and certification in trauma informed care, as well as holistic health and nutrition. She currently specializes in working with individuals living with Traumatic Stress related complex chronic illness, including but not limited to the stimuli disorders, migraine, Ehlers Danlos Syndrome, and dysautonomia, or pots. As a person who also lives with these conditions. Jen is committed to growing understanding of chronic illness as a trauma and the need for implementing trauma informed care within organizations that serve this population and their caregivers. Dennis licensed in Illinois, Washington, Oregon and New York State, and currently lives in Chicago with her wife, where she maintains a private psychotherapy and consulting practice and continues to see clients remotely across the United States. What an amazing resource for Stickler patients than welcome. Thank
Kimberly Warner – Unfixed Media
you. Oh, man. And by the way, Jen has an incredible Instagram channel. I’m just gonna plug it I freaking love your videos. They are so fun. But well informative, too. They’re such an incredible resource. So what’s the handle? Because people are going to ask
Jen Warner, LCSW
that’s incredibly sweet. It’s Jen. Wellness therapy. J. Wellness therapy. Yeah.
Kimberly Warner – Unfixed Media
And we’re not related. Unfortunately. Hi, Joe. I know.
Jen Warner, LCSW
This is a great name, isn’t it? It’s a good Warner
Kimberly Warner – Unfixed Media
Brothers. We could be the Warner. Okay, so actually, I’m gonna direct my first question, Joy. Let’s just like we always do. Let’s start off getting a little bit of your patient experience, your vestibular journey so that we can lay the groundwork for what we’re about to talk with. have family and friends involving them and educating them on this journey. Sure.
Joy Mohr
So the beginning was incredibly rough. Like high seas on a raft, stranded, all alone isolated, just rough. Fast forward five years through lots of ups and downs, ups and downs, kind of a roller coaster ride, I’m finally, in a better position or a better place, I’m feeling a lot better overall. So I feel like I’m closer to my old self, or my new old self. Relationships definitely in the beginning, were strained. I’m divorce. Now, in the beginning, I was still married. But communication was a huge component for why we ended up getting divorce. And a lot of family and friends, family especially didn’t understand why can’t I talk on the phone for long hours? Or whenever they call? Or if two people or two people would be talking to me from a car phone with the radio plane? And why could I not handle that, that was a really hard thing to educate family and friends on. Now, I’m doing a lot better relationships are better. My ex husband and I co parent well, with our two boys. I definitely have lost relationships through this journey. Some I have had to, like disconnect from knowing that they just didn’t serve my nervous system the right way. I know myself so much better going through this journey, learning about it studying. And realizing like I don’t need a big circle, I need solid, good people that can bring meaning to my life. So Wow. It’s it’s been an incredible journey.
Kimberly Warner – Unfixed Media
Wow, I just love what you just said about how certain people didn’t serve your nervous system. I mean, that’s, we can circle back on that. But that’s pretty. Yeah, that’s an incredible place to come to to finally know yourself well enough to know who it who is serving your nervous system and what that actually means.
Cynthia Ryan
Yeah, can be aware of that and to accept that that’s okay. Collective relationships. And, you know, I’ll share, you know, we’re coming at this, we all have an interesting, we all play a different role in this kind of relationship. You know, joy, actually all three of you, Jen, joy, Kimberly, you’re all patients in some way. And and I besides being you know, a, you’re the executive director of Vita. My mother has several vestibular problems. So I am a family member. And you know, even before working with theta, I had the experience of growing up with a mother who has manures disease and BPPV and vestibular migraine. And, and I know that, you know, when I was a teenager and seeing her going through, even when the the attacks were obvious, you know, when she had a vertigo attack that was obvious, and we could all have, you know, have empathy for her, but the in betweens were invisible to us. We didn’t know, we couldn’t. We couldn’t relate to how she was struggling in between. and And then I started working for Vita. And, and I started talking to vestibular patients, and we’re just like, you know, oh, that’s a mom, you know. And then I started talking to other vestibular patients, and I heard my mother’s story over and over and became real much more real to me. And yeah, we can. It’s, I have lots of other thoughts about that. But I also want to jump in here and ask you, Jen. So as I said, in addition to being a therapist, Jen, you also struggle with several invisible illnesses, how does that inform how you approach your clinical work, how you work with people to help them with whoever invisible illness to help them through their journey.
Jen Warner, LCSW
That’s That’s such a great question. And it was, you know, really intentional that I chose to direct my practice towards complex chronic illness. You know, prior This is my second career prior to doing this, I was a documentary, television producer and filmmaker and, and so when I decided to become a clinical social worker, I read after that my work really took me into interpersonal violence and trauma related to that. But as I was diagnosed with kind of one after another after another of these unusual complex conditions, it was like, what I kept, kept coming up against, and this was more than 15 years ago, was doctors sending me for so many tests and not knowing anything and friends being confused. And it was like, I’ve never heard of Ehlers Danlos I’ve never heard what is the word vestibular meaning, you know, there were so many questions, and I just found myself answering these things and either people saying to me, oh, but you look okay, I mean, all the standard things that are said to people with invisible illness. And I realized how after meeting a number of people and myself going through it, how actually traumatizing that can be over time. Because you know, you find yourself in this sort of Alice in Wonderland world of what’s really what’s going on, you know, you know what you’re going through, but for some reason, nobody else can see it. I like to reference Snuffleupagus from Sesame Street when many of us were young. And unfortunately, nobody in their 20s knows what I’m talking about. But when I was young, and maybe when you were young, that Snuffleupagus couldn’t be seen by anybody but Big Bird, I don’t know if anyone remembers that was like ridiculous. Snuffleupagus would be there. And then he’d leave and everyone would show up. And Baker would say, Oh, you just miss Snuffy. And they’d all be like, there’s no Snuffleupagus that Now thankfully, some child psychologist stepped in Sesame Street and said, this is very harmful to children. Let’s have everybody says Snuffy. That that’s what the experience was like. It’s like, you know what you’re going through. But no one else can see it. And no one else is validating it. And so it was just so important to me that I you know, I know what that’s like personally, but then being able to bring that into my practice. So I can say to any client, you know, joy, when you were just telling your story, I can totally relate to that, where it’s like, you know, suddenly you’re on a lovely cruise, and the next minute you get off and it’s like, what’s happened to me. And no one can understand that. And the changes, particularly with the stimuli or disorders that come at affect your entire life. So long, it
Cynthia Ryan
totally changed my relationship to Snuffleupagus, who I adored as a child
Kimberly Warner – Unfixed Media
you know, I love that you come from your experience, Jim is coming from a cellular knowing that to me, you know, is when it comes to invisible illness. I feel like it’s almost essential as a to seek out a therapist that gets that because it’s too hard to academically understand it. Otherwise, it really, really is. And I’m, you know, joy, I’m remembering in our interview for LRC. You even you work for a hospital that looked at you and I’ll let you finish the story because it’s horrific, but what did they think of you?
Joy Mohr
Um, they told me that I looked fine. I looked normal. They didn’t believe my diagnosis. They thought I made up mal de debarquement syndrome diagnosis. Ultimately, I was fired because they did not believe that I had a true diagnosis. Even though there’s, you know, ICD nine, and now 10 codes, and decades of research. It was ridiculous. But yeah,
Kimberly Warner – Unfixed Media
yeah. It’s maddening.
Jen Warner, LCSW
Yeah.
Kimberly Warner – Unfixed Media
That’s obviously one of the challenges you really face which was just the invisibility of it. Can you talk to me about some of the other challenges in your relationships that you’ve faced because of your disorder? So
Joy Mohr
like talking on the phone or making plans, whether it would be going to a kid’s event, like a sporting event or music event, or doing something with friends or even something with family? There were so many times that by the time that event would start which would normally be evening hours, I was exhausted. My brain was just done, the input from that day had zapped me and I was extremely exhausted, couldn’t take another sensory component and and had to bail or had to call and say I can’t do whatever it is that is planned or tell my children, I’m not going to be able to go to your concert or your sporting event and ask other parents, will you please take pictures for me, so I have it, I have a memory to look back on that I wasn’t there for it was very isolating, and depressing. And it just kind of pushed me into this deep dark ravine of sadness, loss. Slowly, I just like lost my I lost my career, my marriage, my community, my co workers, and then had to sell my home. Because I couldn’t take care of it, I was so exhausted and going up and down steps and just doing all of the day to day things that you need to do to maintain a home was exhausting. It was sad and lonely and isolating. And I don’t know how else to describe it, I guess.
Cynthia Ryan
It’s really hard. And, you know, something that comes to mind when you describe that and from from personal experience of mine is that even well meaning friends and family members? You know, they they want to understand, but they can’t. When, what if they haven’t experienced it? And I have, you know, my so my mother, who I mentioned has several vestibular problems. He she lives with one of my brothers and his wife and I was visiting one time. And you know, the, the you have a visitor you want to go do things and they’re like, oh, let’s go to this. It was a crystals museum or something like that. Let’s go to this crystal show. And my mom’s like, oh, no, I, you know, I’ve been there before, it’s too overwhelming for me, this, this, this environment, and they’re like, oh, no, we’ll just be there for a little while, it won’t be a big deal. And so we went and and I don’t have a diagnosable vestibular disorder, but I do have motion issues. And I just gotten off a plane, you know, so I just been traveling. And so here we are in this, in this setting, with a lot of people, a lot of noise, a lot of lights, you know, because of these lights shining on these crystals. And my mom very quickly became overwhelmed and could not, she’s like, I have to sit down and I was feeling the same way. I just became overwhelmed. I had this, you know, this sense of sensory over load. And so in that moment, I could empathize with what she was going through. But most people would just be like, you know, can’t see, can’t you just walk through? Can you can’t you just, you know, deal with it. And so you know, even even people who they want to understand, but it’s hard to understand when they’re not in that place. And Jen from your from your clinical work, you’ve probably, you know, worked with lots of people on their relationships. What’s kind of a theme that you see in terms of the challenges that people have in relationship in communicating about their chronic illness?
Jen Warner, LCSW
Well, I think joy, and I really want to acknowledge how beautifully you stated this joy, the grief, the loss, the grief. I mean, these are like deaths. They’re a loss of everything you’ve ever known. I mean, more than is important to you. So not only are you now unfamiliar with how your body is functioning, but you are losing people that you love, because they don’t understand you’re losing jobs, you’re losing your home, you’re losing connections, because of something that is impossible to I mean, it’s it is so hard to articulate to people what’s happening in these situations. So I think grief is a is a unifying theme here and that I use that we’re really intent should only because we tend to think of grief is like, who died. But it’s like, oh, who died, everything died. Everything in my life has died. I’m here on Earth, but I feel like I’ve died. My life has gone. And I that’s not hyperbole. And I think that many people I mean, I myself have felt that way too. But many of the people come and see me really feel that and, and, you know, because it’s like as Joyce said, suddenly, it’s been almost a blink of an eye. You’ve lost everything is you? Yeah. Yep. How do you articulate that to the world? Yeah. So that’s a unifying theme. But I think I may have gotten off of your questions.
Kimberly Warner – Unfixed Media
No, I think, perfect, just amazing to be able to provide that space for people because, you know, I grew up with a psychological mother. But when I was going through this, of course, I wasn’t thinking who died, and that I should be grieving. I knew I felt miserable. But I didn’t know why. And so for somebody for you to find the name it for a patient and say, This is great. To give them that space to breathe is probably like the first, you know, first tiny step towards allowing that experience to be part of who that your new self, your new identity. I don’t know if you’ve experienced that Jim, or people feel like a little leaf almost to go. I’m grieving. I hope this well.
Jen Warner, LCSW
Yeah. And yes, and I would say that, you know, to that same point, you know, when we think of post traumatic stress, right, everyone’s generally familiar with that. But the word post means that the trauma itself is over, and that you have a distance from it. In the case of our disorders, for instance, with the stimulator disorders, so many of these other conditions, it’s not over, it probably will never be over. So what you’re in is in a state of enduring traumatic stress. That’s a psychologist at Columbia, Donald Edmondson who coined that term enduring traumatic stress. And so you don’t actually end up with the privilege of grieving and moving forward, as if it’s like, well, that chapter is gone, because you’re living with it. So it’s like, I’m both grieving and having to coexist with my grief, because every day may bring something new, there could be some relief, or there could be something that feels like a new loss. So it is a really delicate balance, which is, you know, where therapy of this type or trauma therapy in particular, is, can be a beautiful space to hold this and because it’s, it’s ongoing, you know, and I think that, you know, we often we with grief, we had the, again, the privilege of having a point of, you know, acceptance and the, the, the original, you know, Elisabeth Kubler Ross way of thinking about it, and that it’s done. But what do you do when
Kimberly Warner – Unfixed Media
you’re grieving maybe every day? And during traumatic stress? Is that what us part of it?
Jen Warner, LCSW
That’s the framework from which I work. Dr. Edmondson was referring to cardiac kills, but I like to apply it to this work. So that’s I
Joy Mohr
definitely think it applies. I haven’t heard that term. I like that term. And it’s something that I feel like I could use with my patients, too. Yeah.
Kimberly Warner – Unfixed Media
Yeah. It provides a context that an understanding that is so necessary, because otherwise we’re thinking trauma, and they have to somehow get over this but which tomorrow morning, wake up. The same anxiety, it might have this, I mean, all of that is still very alive.
Jen Warner, LCSW
You said this, and Cynthia, you said this, too, about how with the stimulator disorders, there are layers. That could be melded department, which is a diagnosis that was applied to me at one point. But Cindy, you said your mom has Menieres BPPV and this tubular migraine, and it’s like and what is it today? How is the loss going to be experienced today? What’s going to come up today? Am I what else might I be losing? Today, even though I may have gained a new diagnosis, it really turns this word grief on its head. Yeah. You know, I’m remembering now you might have an interesting insight about this gym.
Kimberly Warner – Unfixed Media
I one of my early psychotherapeutic interventions was brain spotting, because what the and that’s, you know, a type of EMDR So it was working with the trauma. And for me, it was the trauma of the initial bicycle accident where I flipped through the air. And the theory was that somehow, my brain got stuck in the flip. And that’s why I was always dizzy. And so the brain spotting was always bringing me back to that initial trauma, hoping that somehow it was going to resolve it, and then I’d walk out and not dizzy anymore. And oh, my God, I spent 1000s of dollars on brain spotting, and I was just as dizzy as I was at the end, as it was, and it was never addressed, or the fact that I was dizzy, in the moment, you know, and walking out with the dizziness and then waking up with it’s just, it was, like you said, it wasn’t addressing the enduring aspect of it. So
Cynthia Ryan
one of the things like I kind of connected with when you were talking about that was the fact that, you know, here’s the physical part of recovery, whatever you’re recovering from, and I don’t know about anyone else, but I am the type of person who feels like I have to push through it, you know, I have to, I have to work, I have to be working on it all the time. So that I get better. And it’s, it’s this linear, this linear thing about pushing through it to get better. And there’s no just being in it. And when you’re dealing with, you know, your, your feelings, your emotional trauma, it’s the same thing you feel like you have to push through it to get better. So you don’t have these feelings. And so, that concept of you know, as we’ve everyone has mentioned, here, creating the space to be with your grief is such a relief, and release. And I can picture when I, I similarly had an accident that I went through a counseling for to, you know, to deal with the trauma of it. And, and that moment where I could realize I could just be in it and feel and forgive myself and and just let be with the emotions and let let that be okay. It was just this like, just this aha moment, this big relief. Yeah.
Kimberly Warner – Unfixed Media
Yeah. Well, and I imagine the some of the pushing through it is because going back to our relationship topic, which I totally forgot, we were on that topic. But, you know, we do it for others, we want to, you know, we want to get better because we feel like crap, but we also want to get through it in a speedy way. So that we’re not creating suffering for all the people in our lives, too. So joy I wanted that’s going back to relationships. We talked a little bit about a lot about the challenges in your relationships, what are some positive things that come came out of your relationships through this.
Joy Mohr
Um, so I have, I don’t have all the relationships that I had going into the cruise into this vestibular journey, but the relationships that I have now, some of them are the same old relationships, but then new relationships, and I’d say that they’re much more meaningful. And they don’t have to have an understanding of my conditions or that any given day I could be having a bad day. But I feel like the people that are still in my life for the new people in my life, hold that space for me. And don’t judge me. Don’t criticize me for having a bad day or having a vestibular flare up of some sort. You know, going back if there is an anxiety with it, of will I wake up with a migraine will I wake up and my ears are ringing so loudly that I feel like a NASCAR engine is next to my head. So it’s brought me more peace by having people that are understanding not necessarily understanding of what I’m physically going through, but just hold this space like that’s okay. You do you today rest, and we’ll get together another time. Versus the beginning when I was I was made to feel guilty by some people and I don’t think it was all intentional. But some of the wording made it feel intentional. Um, So just overall more meaningful relationships, I’m trying to cultivate more understanding with my children of others. I’m not as judgmental, it’s so easy to be judgmental of other people. And nobody ever knows what is all going on in that person’s life. Is there something physical, mental, emotional, there could be so many things going on. So just having some non judgmental sympathy, empathy, caring for other people. Yeah, yeah. And then with my patients, I allow them some time, if they’re going through something that’s tough, or if they have a rare condition, or an illness that not many people understand or that me as a health care provider may not even understand. Just giving them some space to vent that out, get whatever they need out, and letting them know, even if I don’t completely understand what they’re going through, I can hold space for them, and listen to them.
Cynthia Ryan
So it was interesting, how, you know, go through life, and we have relationships with people. And it’s sometimes not until something traumatic happens that we get to see the positive or negative effect that has on the people we have relationships within sometimes it is the opportunity for someone to shine by showing their empathy. You know, whether that’s a spouse, or, or a child. And that can be, you know, really a beautiful thing. Yeah. Jen, I know that you in your therapy, you use a multi pronged holistic approach. Can you talk about that, and what that means and how that helps people? I don’t want to say get better, faster, but just you know, in their overall achieve their overall goals, wellness goals.
Jen Warner, LCSW
Yeah, no, of course, I’m the gold standard, in quotes models for working with complex chronic conditions or working with this tubular disorders fall under the cognitive behavioral therapy umbrella. And that includes Act, which is Acceptance and Commitment Therapy, I utilize cognitive behavioral therapy, and I combine it with Somatic Experiencing work, and mindfulness work. Cymatics is such a huge part of the work that I do. But I like to also have something that’s going to work with the mind. So as I explained it to my clients, it’s like, you have your mind and your body are in a relationship, and they always happen and, but but in when complex, chronic illness starts to kick in, you have a relationship that’s really going south. And often it’s the mind that wants out of the marriage, you know, isn’t the body that necessarily wants to get divorced, the mind really does. So the mind tends to send lots and lots and lots of messaging. And that we you know, there’s there’s cognitive behavioral work that can be done with that the body is, is going through something that can’t be thought through, right, the body speaks in sensations, the mind speaks in words. So we you know, are kind of in this position of doing a sort of couples therapy, right, that’s like that’s how I like to refer to it in my work so we’re doing you know, some some work combining and understanding of how the body works, how the nervous system works, with cognitive behavioral approaches, because the mind loves it loves to talk about its own thoughts and want to help the mind also start to understand what’s going on in the body using the body’s language. So the body will take you know, we are we start using techniques that the body to speak and communicate what’s going on with it to the mind. So it’s like speaking two different languages and getting both your mind and your body on the same page. So I combined it in that way. And that’s something we’re not that’s somewhat unusual to kind of combine those things. People will say to me, Well, how do you combine CBT and Cymatics? That doesn’t, doesn’t really work and, and it does, but it’s definitely an art and a science. Okay. melding these two,
Joy Mohr
I can attest to that. I have worked with a health coach, who was a somatic experiencing while she was certified functional medicine, health coach, and studying somatic experience. And then I started studying somatic experiencing. And I want to say that’s what accelerated my healing process. And it’s going to be a forever healing process, because it’s a forever condition, condition. But yeah,
Kimberly Warner – Unfixed Media
absolutely. Curious. So, applying relationships to this gym would like, let’s say, someone comes in and says, I have MDPs, my husband doesn’t understand me, it’s really stressing our marriage. Would you bring him in to a session too? And do apply CBT and somatic experiencing together as a couple? Would you? You know, how would you work with that in a relationship sort of way?
Jen Warner, LCSW
Well, I tend to think that like every any, even couples that want to go into couples therapy should have their own individual therapists. And so I like to, unless a client wants to bring in their partner, their spouse or family member as a collateral where we can have like the original session, where it’s learning, some of these things are really focused on working with the client, because we’ve got lots of fun, you know, really stabilization work. So I should also add that in addition to somatic experiencing, and combining things like polyvagal work, right, and even to some degree, you know, internal family systems, there’s a lot to be done there. And it’s an almost enough to spend our time working on helping the person who is really often that people are thinner in a state of crisis when they arrive. So we really need to focus on learning about your nervous system, stabilizing your nervous system, so that you can then take what you’ve learned, and go and potentially speak to your spouse about it without becoming destabilize. You know, I if anyone’s going to come into a session, we have to have done quite a bit of foundation name before me
Kimberly Warner – Unfixed Media
that it makes a lot of sense, you’re right, and it’s making the shift in the patients, and then allowing them to show up probably more fully. Yep, or more a waiver of actually what’s all going on inside of them and being able to communicate that is huge. Once you apply that tight relation.
Cynthia Ryan
You know, if I can take a minute, and I think most people are familiar with the term, cognitive behavioral therapy, but there might be people out there listening who don’t know what Cymatics therapy is, can you describe that a little bit more.
Jen Warner, LCSW
So somatic therapy, the soma is the body. And so it’s working with, really, it’s working with the nervous system, and regulating, bringing in techniques to help regulate the nervous system. So a lot of people think of therapy is just being taught talk, talk, talk, talk, I’m just going to sit there and talk and then we’re going to talk. But somatic therapy is less, much less tolerant. It’s no talk. And it’s just working with what’s happening with the body in the moment, inviting the body to tell us what’s going on. And then working with the body in that space. Often, many of my clients, especially when they’re either in a flare or something else has happened, we will spend a considerable amount of time in a 60 minute session, just regulating the nervous system. And it’s not about getting.
Cynthia Ryan
So I know, for me, when I like I when I was in a counseling session, and I was I was describing something that was going on for me and I knew I was getting tense. And when I get tense, my shoulders do this. And I think the end, you know, my therapist was like, Okay, let’s, what’s your body doing? What’s your body telling you? And that was really revealing to me. And dealing with that really helped me to be able to then deal with the, you know, the things that I was talking about?
Jen Warner, LCSW
Yeah, cool, because it’s a two way street. And I know, I really don’t want to take up too much time with this. But you know, if your shoulders are up here, right, and you’re sitting there with a therapist who’s trained in Cymatics, as well. Now your mind at the same time that your shoulders are up here has a whole lot of stuff going on. Right, your mind is probably telling you lots of things about how uncomfortable you are, how unhappy you are, how things are not going right. And meanwhile, your body shows the shoulders are going up, up, up, up up, if we can invite conversation to the body, because the mind just wants to get in there and do all the talking like that person at a meeting who just like takes up all the oxygen in the room, we’re asking that person to maybe step out for a second. And we’re going to work with the body. So if we can get the body into a state of relaxation, the mind has to follow the body. So the body gets to speak first and somatic work versus the mind speaking, because the mind has this idea that it is the all powerful one. And it’s like, actually, the body is incredibly powerful. And so there’s a dynamic shift, and an appreciation and a respect for the whole person, but for the body that is doing so much, because when chronic illness happens, your mind immediately gets mad at this and just hates the body. And it’s like, the body’s still incredibly powerful. And it’s also the vehicle that is transporting you through the whole person through the world. So we have to learn how to deal with it first, which is a bit of a paradigm shift. So anyway, I
Kimberly Warner – Unfixed Media
wish we could get a show of hands from our audience of how many shoulders went down. Yeah, mine did.
Jen Warner, LCSW
We did an exercise
Kimberly Warner – Unfixed Media
of joy. These are some incredible tools that we can learn in therapy. And I want to know also if there’s anything else that you learned communication styles, relationship to things that helped facilitate your relationships going through this.
Joy Mohr
So the Matic work that I learned about started studying that helped me get to know me. And, and then that helped me figure out who’s healthy for me and maybe who’s not healthy for me. There are also a lot of there’s been a lot of growth, and realizing that not everybody will grow. Some people stay stuck or stagnant in their life. And they it’s black or white, there’s no gray. Learning how to identify who those people in my life are and then how to move forward with keeping them either in my life or maybe distancing myself. Um, I don’t know if I’m exactly answering your question. It’s,
Kimberly Warner – Unfixed Media
it’s actually fabulous. I love it, because it’s not what we typically. Yeah, a lot
Joy Mohr
of it has been around the somatic work that gin has mentioned and talked about. I’m, I’m a newbie, very newbie in that, but it’s been so therapeutic for me. And it’s helped me significantly I have done a lot of holistic and then applying that to Okay, who’s going to be a positive person in my life? And, and knowing that I need I need people who challenge me, but not people who maybe degree me or demean me but are accepting of me. And and vice versa. I need to be accepting of others too. And I want to say that I always have been but I’m sure that there’s been times where I haven’t but that has helped a lot moving forward getting to know the inside me a lot of internal work internal soul or and growth.
Jen Warner, LCSW
Yeah, lots of growth, lots of tears.
Cynthia Ryan
And something I I think is interesting there that is probably really obvious but I want to call it out is that you’re talking when When Kimberly asked about you know tips for dealing with new relationships, new went to what you could do yourself, you know working on yourself and how important Working on yourself is in your awareness and your interactions, what you’re doing to interact with your relationships, as opposed to saying, Well, everyone has to change to accommodate me. Right? I think the elders to do all the work. I mean, it is a two way street. You know, others have to, you know, others have a part in a relationship, but we also have a part to play as well, there.
Kimberly Warner – Unfixed Media
That’s yeah, so I love that one that’s more empowering. Because you can’t, you know, they may not so but what we can control is how you know, what we work on within ourselves. And then like you said, joy, some will fall away, and some will rise to the occasion. Yeah.
Cynthia Ryan
Can you share an example of someone that you’ve helped, that you’ve worked with? Who was really struggling with their relationships? And, you know, was there for them? Was there like, this aha moment where things clicked into place? Or was it more of a gradual process?
Jen Warner, LCSW
Yeah, I can’t I mean, it’s an with all of these things is because relationships are organic. It’s always evolving, right? So things clicking into place, they may click into place with some people, and then you’ll find that other people, you know, as you’re learning and growing, they’re learning and growing and changing. And but not, we’re not always growing and learning together. So you know, the person that I’m thinking about, and this is actually not just isolated to this person, the pandemic made things worse for a lot of people. And it actually brought a lot of things to a breaking point for a lot of folks in the chronic illness community. This person is young, they’re in their 20s. And they had been living with roommates. And they had been living with themselves and been living with chronic illness since they were a teenager. And suddenly, during the pandemic, their their other friends wanted to go out to protests and do all these things that this person could not do, because they’re immunocompromised, other things going on. And that caused this huge rift, that because it was like, well, it’s not safe for you to come home, and not, you know, and they’re like, well, we’ve been wearing masks, like, it’s still not safe. So this person, you know, again, they’re only about 25 ended up having to move out, which was devastating, you know, these were some of their closest friends since college. And they ended up having to move out alone in the middle of the pandemic didn’t have now a social support system, immediately available to them because of this, and was really, really hard. And what ended up coming up for them was a tremendous amount of what’s called an internalized aid. So when we think of the term ableism, it’s basically judging people based on their ability or their disability, or the presumption that people that all people can do the same types of activities with a lot of disregard for people whose disabilities run the gamut. And so internalized ableism is that turned on ourselves? So this person was just like, oh, you know, I mean, did I do something wrong, and I, maybe I should, maybe, maybe my illnesses aren’t real, they hit home, they were questioning so much about themselves. And the work that we ended up doing was pretty revelatory, because, you know, as it turned out, there was a tremendous amount of old shame that they had carried to both in their mind and in their body about their conditions, since they have been diagnosed as a teenager, a lot of shame around it. So in working through that, and challenging the experience of loneliness, right, which is not just something that when we think about and proceed with our mind, but we certainly feel loneliness with our bodies, and learning how to experience that without it, setting off layers, right, this person has a number of different things, including dysautonomia, and because of conditions, and the experience of being alone or in feeling lonely would often trigger their symptoms. So we really had to do a lot of nervous system work, but we ended up you know, also processing a lot of their old historic trauma. And they are doing so much better now. Then they’re living with their partner. And they’ve also realized, like, you know, as George was saying, to some people, you just don’t, they thought that they were along for the ride. He thought that you’d have them in your life forever, but it’s, it’s actually okay that you don’t, and it kind of, you know, it’s like it’s sad, and yet we can move forward and we’ll find and this person is also now finding a whole new community of people living with disabilities, and they feel so much more empowered because they don’t have to explain everything. So you is
Kimberly Warner – Unfixed Media
that’s a fabulous story. I’m really happy for her. I don’t think there’s, you know, those happy endings and being, quote unquote, it’s, it’s hard to imagine I probably felt like a death to her, as many of us and many other deaths that are accompanying the disorder, where it’s like, oh, great, now I’m moving my friends to. So. Yeah. Joy. Looking back, as this young woman will look back at some point to on her journey of living with her roommates, is there anything you would have done differently? In terms of communicating with your family and friends?
Joy Mohr
Um, I don’t think so. Um, I don’t think I had the insight or the, the capabilities at that time to try to communicate differently, like, everything just hit so hard, so fast. And like Jen had mentioned earlier, like I was just in crisis. It was crisis mode for quite a while. And when you’re in that revved up crisis, what has just happened and you’re watching everything, fall away from your life? It’s hard to have good coping skills, and good communication skills. I don’t think that I would have done anything different. Now. If it were to happen today, then yes, I would handle things differently.
Kimberly Warner – Unfixed Media
I love that answer. That is, you know, you’re absolutely right. I can remember a time when you’re so overwhelmed by all the sensations and the symptoms, it’s an impossible task to be like, oh, gosh, I really should, you know, speak more clearly, from my feelings in this moment. It’s as if you know, you’re operating like a child, a pre verbal infant. And I think that’s really honest for you to say that, and probably good for the audience to hear too, because then I think they won’t walk away from this going to be better. You know, and that’s the worst thing we could do for our nervous systems in those moments of crisis,
Cynthia Ryan
I think. Yeah. Well, I’m gonna want to ask you both this question. What would you say to someone who’s out there who feels like their family and friends will never understand what they’re going through? Joy Do you want to start?
Joy Mohr
I’m sure. So, patients, which anybody going through this journey at some point, they’re going to learn patience, but patience is definitely important. Family and friends, some will come around, some may not come around. And that’s okay. Everybody is at different stages or places in their life, have different capacities to show empathy or sympathy to one another. I think one of the things that helped me was when I first came across vida, and and started reading about similar patients with the same diagnosis as me are similar diagnoses, and that their stories almost fit mine. And realizing, okay, I’m not the only one that’s going through this. And, and all of these people were in different stages, too, and seeing that, okay, it is gonna get better. It’s getting better for this person. But they’ve been dealing with it for 510 years, and I’m in year one. So, patience is a big thing. Working with your nervous system is huge. And once I stumbled across that everything changed. And it just made things so much easier. I hope I answered it. I feel like I got a little tangental
Cynthia Ryan
No, I think that’s something that we don’t think about in this journey. is working with our nervous system and I’m also human student, you know, connecting with theta and getting validation for how you were feeling. And that that, again, that’s kind of working with your nervous system, it brings your anxiety level down to know that you’re not alone in this, that there are other people out there who are part of the larger vestibular community who who understand. And for anyone listening, Vita has support groups, support group information on our website, if you’re looking for peer support. And also we actually have a page, it’s the stimulator.org, backslash F, as in Frank s, as in Sam. And as in Nancy, that’s family support network, that is a page that you can direct your friends and family to, so they can learn about what you’re going through. And what that what some of the things there’s, there’s like an article on there that a patient wrote, that’s like, these are the things that I need from you, you know, so that it’s, especially if you’re in a place where you can’t communicate that sometimes it’s helpful to have a resource to have them and say, Here, please read this. So, yeah, thank you for that. Then how about you? What would you say to people who feel like, Oh, my frozen family will never get me?
Jen Warner, LCSW
Yeah, I think the first thing I would say, and I certainly said before, is that it’s, it’s not your job to convince people that you’re sick. So it’s it. And that’s very hard initially, because it’s like, well, I need support, I need these people around me. And, yes, we need we need support. But at the same time, it’s, it’s just you don’t have to convince anybody of your illness. Now, people, this is this can get really complicated. But I think, you know, starting there, and joy was saying, nervous system work. So connecting with a therapist connecting with communities that are can relate to your illness. Start there. So if you have people in your life are like, I don’t understand what this word vestibular, it’s like, well, yeah, here’s this is wonderful, here’s a website, you can go read about it. But beyond that, it isn’t your job. Connect with and start finding communities that do understand it, connect with a therapist, or even group therapy, where you can learn some of these somatic skills. Because, you know, somatic work at its core is about restoring a sense of safety in your body. And when we have had scary things happen, dramatic things happen. Our body does not feel safe internally, we just don’t feel safe. Even if there’s nothing going on around us, we just don’t have that sense of what’s called felt safety. Somatic work will help to restore that sense of filled safety. And that is going to make it easier to do everything. Because when we come out of a state of fight, flight or freeze, right? Everything starts to function better, we think better, we feel a little bit better, and we can make better decisions. So it’s no it is the ultimate in being on the aeroplane playing rock with the mask on first. It’s very, you know, it’s like got to take care of you. First, we can hand off resources, that’s great. But that’s the least of your worries. Other people are the least of your worries at that, you know, especially initially. So
Kimberly Warner – Unfixed Media
this is my absolute favorite episode. It was I don’t know about you, Cynthia, but it was just like, it really took a new path from what the typical, how do we work on our relationships with chronic illness. And I really appreciate the insights that both of you brought, you know, there’s that there’s, I had to google it, because I know there’s 1000 quotes like that, but I found one, it’s like how you love yourself is how you teach others to love you. And this is the foundation of a relationship. So yes, there’s lots of tools and there’s things we can send them and we can bring them to our doctor’s appointments and all those practical things. But you’re right, it has to start with working with ourselves and our nervous systems and our sense of safety. So thank you. Thank you.
Joy Mohr
Yeah, thank you.
Cynthia Ryan
Thank you for sharing. And thank you for being part of our vestibular community. Thanks for tuning in to ICU this month. We
Kimberly Warner – Unfixed Media
hope this conversation sparked a new understanding of the vestibular journey. And for all of our patients out there, leaves you feeling just a little more heard. And a little more seen. I see