Polyvagal Theory

Providing Some Relief and Healing

A Collaboration with Bethany McCraw and Laura Bernas

The lack of clarity about what will provide some relief from the myriad symptoms people face from Long Covid can be stressful. Some people spend thousands of dollars trying to figure out what’s wrong with them and what might help (see Ty’s story) and in the end things only get worse. Struggling through these symptoms with little relief has been even more stressful for many people than the constant dismissals from clinicians and even the constant relapses after things get slightly better. The inconsistency in how you feel and what might help you feel better continues to be a central question in the patient community as well as among clinicians. 

Polyvagal Theory has been mentioned by a number of Long Covid patients I’ve been speaking to. It’s not a new approach in psychiatry or psychology—and it’s certainly contested. I spoke with two women who have found extraordinary relief by reading about and engaging therapy based on Polyvagal Theory. So, in the spirit of phenomenology, I asked them to get together on a zoom call to discuss the research, experience, and observations they have about polyvagal theory.

Polyvagal Theory purports the autonomic nervous system is a central messenger and influencer throughout the body and mind. In this way, Dr. Steven Porges describes the “theory links the evolution of the autonomic nervous system to affective experience, emotional expression, facial gestures, vocal communication, and contingent social behavior.” Therefore, the theory posits: addressing autonomous vagal states to restore balance will have a rallying effect throughout the body and mind, improving multiple symptoms in different systems. In other words, Polyvagal Theory has the potential to provide some relief, perhaps even healing, for patients with these constellations of dynamic, complex chronic conditions. 

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What I find interesting the longer I engage with people living with dysregulated autonomic systems is the depth of embodied knowledge which emerges. In anthropology, we call what they are doing embodied research: a constant triangulation of scholarly reading, bodily experiencing, and reflecting on the interaction of nerves, pooled blood, racing heart, dizziness, fear, pain, hunger, and the myriad other symptoms which ebb and flow. 

One of the people I spoke with is Bethany McCraw. Bethany owned her own hip hairdressing studio in the first level of her home when she got COVID-19. She had to close her business, causing extraordinary isolation. Through multiple traumas, Bethany has been a true survivor for nearly four years now, studying the scientific literature, reading the grey literature, engaging in online patient communities, taking medically-offered zoom courses for programs to support CNS healing, and working one-on-one with a therapist specializing in Polyvagal Theory and nervous system disorders.  

I also spoke with Laura Bernas, an actress who has a background in neurophysiology and post-traumatic stress. Laura experienced protracted withdrawal syndrome and post-ssri sexual dysfunction from coming off of an antidepressant medication four years ago. Her resulting symptoms of autonomic, immune, and cognitive impairment, mirror many aspects of Long Covid, and have also been lumped with other complex chronic conditions such as ME/CFS and Chronic Lyme.

The following includes excerpts of my conversation with Bethany and Laura. I find their insights and experiences fascinating. I think many readers will benefit learning from their embodied knowledge in their healing journeys. I have modified the conversation in part for length.

Laura Bernas: More recently, as my health has gotten better from what it was three years ago, I have been really active attending conferences, and communicating more directly with people who are researching and advocating in these spaces, the majority of which is happening outside of the United States, which is obviously, very frustrating. It's great it’s happening at all, but also very frustrating it’s not here yet. My academic background is in performing, but also in neuroscience, cognition, and post-traumatic stress. Very early in my experience I learned about the largest forum for psychiatric withdrawal experiences in the US, which is called Surviving Antidepressants. It is a really incredible database of qualitative and quantitative information. Adele Framer, who runs it, is one of the leading experts on psychiatric medication withdrawal who works a lot with other leaders in this space-like Dr. Mark Horowitz for example, based in the UK.

One of the things talked about very widely is misdiagnosis with other autoimmune conditions, Lyme, ME/CFS, POTS.  When Long Covid appeared, very similar conversations began happening in terms of the similarities between these conditions, and then different theories everywhere you look. But how are they alike, really? And what are the key differences? These are really important questions. And I will say it is very frustrating that certain conditions get a lot more attention and research funding than others for political, social, and economic reasons. Long-Covid is at least seen as somewhat legitimate, whereas post-ssri conditions that are now being formally recognized globally, are still not in the US and debated as real (despite the sheer number of people reporting their experiences worldwide).

Bethany McCraw: I suspect I may have probably dealt with what you're dealing with at times in my life. I’ve had many instances of impairment after taking antidepressants, but also never had the words to describe it, because I've also been misdiagnosed all my life. I don't even know where to begin with my story. It's a lot. I’ll start with recent history: when I got Covid it was in March 2020, right when lockdown first happened. And it slammed me to the ground.

Because I got sick so early, nobody believed me about any of my symptoms. Let me back up a little further. It’s only by extreme luck and extreme chance, way back in January 2020, I was assigned to a pain clinic. I'm a breast cancer survivor, and I deal something called PMPS, Post Mastectomy Pain Syndrome. It's something you never hear about in relation to breast cancer. But 30% of all breast cancer patients suffer it. A third of people you never hear about get searing nerve pain after their mastectomies. It’s a cutting and burning sensation which has never lessened since my surgery in 2016. So the pain alone, is considered a nervous system disorder.  In January 2020, I was referred The Comprehensive Pain Clinic. They employed a holistic approach, offering both Western medicine and Eastern modalities. They had an acupuncturist. A naturopath. Surgeons. There was a bone guy. There was a nerve guy. Several different types of OT/PT practitioners. And also mental health support, tailored for pain patients.

My social worker who was assigned randomly just happened to be an expert in Polyvagal Theory and nervous system disorders. A physiologically-based nervous system specialist in a psychology-based field. So this comprehensive pain clinic team changed my life entirely. But only 3 months after I joined with them and started learning about all these things, Covid hit me hard. It further destroyed my nervous system, and I've never been the same since.

The pain clinic offered all these classes, and of course during the pandemic, they became online zoom classes. I spent nearly three years taking every online class I could manage, plus my social worker became my therapist for private counseling zoom sessions too. Classes on Polyvagal Theory. Classes on mindfulness. Classes on sleep hygiene and insomnia. Classes on pain and nerve function. Classes on cognition. More. Not being able to work, losing my business, having to shut down my whole life, and having no income, I finally qualified for Medicaid coverage. So for the first time ever in my adult life, I could pursue testing and diagnoses with insurance coverage. My social worker was the first person to ever diagnose me correctly, and recommended me to ask my doctors for the right tests. So all of a sudden all these results started coming in, not only physical and genetic studies, but behavioral studies also.

As it turns out, I was born with nervous system disorders. I'm autistic with ADHD. I’ve been dismissed, misdiagnosed, ignored, and gaslit my whole life before Covid. Now I have some understanding about all the different aspects of autoimmune disorders and central nervous system impairments, so many things about my life make sense now. I have an understanding of how burnout can contribute to outcomes like my breast cancer. Other things, too, like why no antidepressants ever worked for me!

I always had terrible side effects. I was on so many different antidepressant cocktails for decades. So many times, I’d be in such pain, or have an emotional outburst, or their therapies didn’t work. My doctors at the time would say things like, “Oh, well, you're just under stress”, or, “You're too young to have this kind of pain”. But another thing I understand now: nervous system disorders are also highly comorbid with connective tissue disorders.  Two years after being correctly diagnosed as autistic with ADHD, the same pain clinic confirmed: I am hypermobile. It’s called Ehlers Danlos Syndrome, or EDS. The hypermobility aspects of it are usually referred to as hEDS. It is an umbrella term for a whole kaleidoscope of connective tissue disorders and is considered also a spectrum due to the vast range of how different systems are affected in different people. No two have the same presentations, making it tricky to diagnose even though for some, there are genetic markers. I went my whole life having pain, issues, injuries, and no support, because doctors didn’t believe me, and I also couldn’t pay out of pocket to pursue the correct diagnoses and treatments. 

So the trifecta: BOOM: ASD/ADHD/hEDS. Any one of these conditions requires specific management and treatment options to be effective for relief. It’s been crushing to realize just how unsupported I’ve been until age 55, and 57 years old. These diagnoses changed EVERYTHING about my care: OT/PT is different. hEDS changes how you metabolize some medications. Many of my prescriptions changed overnight. It changed my communication styles and how I interact with others, now I understand how vagus nerve states work.

The grief is enormous. I’m not sure I can even find the words to describe how far-reaching the impact of more than 5 decades of misdiagnoses. So much PTSD. So much gaslighting. All nervous system disorders. So I've been trying to learn as much as I can about how to address and regulate myself, because the medical world beyond the comprehensive pain clinic is NOT helping me. Only now, I’m realizing, this “stress” I’m feeling is my overwhelmed nervous system attempting to regulate itself. Doctors are not going to heal me. Only my own nervous system is capable of healing itself. Supporting my CNS function is my only chance. At this point I feel like it may be too late. I’m older, extremely burnt out, and maybe too far gone to ever fully heal. I don't know it’s possible for me.

Polyvagal Theory is probably the one thing which has ever truly worked in my life, in terms of actual, concrete methods which help. Looking back over the course of my life, at all the times I was medicated for “depression”. I don't think I've ever actually been “depressed”. I think that I've merely always been neurodivergent with connective tissue disorders, dealing with medical PTSD/CPTSD, and been entirely misdiagnosed until very, very recently. It’s caused me enormous damage to have to navigate life this way, under the radar, and under the wrong assumptions. 

Laura Bernas: Bethany, I just want to acknowledge the totality of your experience is so profound. I want to thank you for having the courage to share because it is immense. One of the things that I have been thinking about is what it's like to experience the pace of medicine’s progress (and society’s thinking) in the moment. 

I would say, we're both people who are experiencing conditions the current medical paradigm (and US health system at large) is largely, absolutely in no way equipped to deal with. I agree- it’s cruel and enraging. Almost all of the pertinent information in regard to post-ssri conditions for example is coming out of Europe and we’ve barely begun addressing Long-Covid. With regards to post-ssri conditions, accurate information and guidance is so difficult to access in the US. These conditions are real. Protracted withdrawal and PSSD have been formally recognized outside of the US. Protracted withdrawal was recently added to SNOMED. England has the All Parliamentary Group for Prescribed Drug Dependence and the Lived Experience Advisory Panel for Prescribed Drug Dependence. Our experiences, at least overseas, are trying to be added to formal systems in some capacity. It’s only one step. But at least they recognize they exist-there is no debate. And yet, in my own country, we lag behind, and I am at the mercy of not just a stagnated pace, but a pace that doesn’t even want to be set. So where does that leave me? I have to advocate for myself, educate myself, connect myself to resources, which is in itself exhausting. And thank god I am previously educated in a way in which I actually know how to do all those things – reading scientific literature and having access to some financial support playing huge roles here. I think very often about all the people not equipped to do that (either educationally or financially) and how they are left to languish in their own suffering or traumatized as they are gaslit even further. The health system in the US is ableist to begin with – it is wholly unprepared to deal with complex, chronic, confusing, new neuro-immunological conditions (which the system also has no financial incentive to want to heal or radically address).

There's just been no movement on these issues and for-profit industry continues to dictate policy at the global level. Part of the main problem for me is the underlying philosophical, educational, material history of medicine, and its progression. We have this structure that has separated everything, even when we now have scientific information which demonstrates that in fact, these internals organ systems do not operate in silos. Nothing is happening inside of a vacuum, in the human body. All our systems are connected. But the medical system is structured separately, for separate systems; no doctors are talking to each other.  No docs even think about the whole picture. When I suggested to my docs all of my symptoms were related, because they came on all at the same time, I was laughed out of the room. No one took me seriously. I remember thinking, by the laws of physics, your response doesn't make sense. Cause, and effect. Connections throughout body and mind. The simplest ideas are usually the right ones. How are we not even using our most base human logic to interact with our own bodily systems?

Bethany McCraw: It's the cruelty of the for profit healthcare system. I'm reminded by what I do to help with the POTS symptoms. I typically get saline IV treatment once a week because it really reduces my dizziness and nausea. I sleep better. There's something about having my blood volume full. It gets all my electrolytes right, but without taxing my autonomic system to make my organs function as they should, by drinking water and sending it through all the correct channels. It takes pressure off. The vagus nerve function gets a little break from getting fluid volume high, electrolytes balanced, all without the internal pressure to do so itself. All my symptoms improve after saline, though it's temporary, and only lasts few days at best. 

The PMPS nerve pain extends to just above my elbows. They can’t place a BP cuff on my upper arm, or put the IV needle in easily because of it. Even though it’s in my charts, I have to remind them every single week I go in: “You can’t place the cuff, or the needle, this way on me.” It’s terribly apparent, they don’t understand anything about nervous system disorders. Let me give an example of what I mean: the nurse is telling me, “I need to put a hot pack on you to get the vein up.” I replied, please don't do that. It's gonna cause me further nervous system dysregulation. She said, “Well, it's only gonna be on that one spot”. Then I had to explain: Nerves go everywhere in the body! It’s all ONE PIECE. If a nurse in a cancer ward doesn't understand how our nerves connect all over, what chance do we have in understanding ourselves? It's all one piece.  

But healthcare workers and doctors don’t view it this way. If you have a broken vagus nerve, however, those pain signals can, and will, go everywhere. All over the body. It’s what “sensory processing issues” are. Your senses are systemwide. What affects one part, affects all the others. There is no separation within our systems. 

Another aspect of this disconnect is resentment. All of us resent the fact that I, as a hairdresser, have to educate my all doctors and carers, in real time. They resent it. I resent it. Nobody's happy to have to have a hairdresser explain nerve function to a chemo nurse! It feels very inappropriate. But if I don’t educate them, I am the one who gets hurt. I have to advocate fiercely. It’s maddening. 

Laura Bernas: Yeah. I was talking to my primary care doctor, who is also a naturopath because she is the only person who has actually been able to help me and get my health moving in a positive direction. I was considering maybe traveling to go get tested for autonomic/autoimmune mediated small fiber neuropathy, because it’s something being talked about as an underlying mechanism in post-ssri conditions.

Bethany McCraw: I've dealt with it for decades. Honestly, until I started speaking to you, I didn't even connect all the pieces. I thought, Oh, have I experienced this? Maybe I still am. I don't know. It's very interesting to consider.

Laura Bernas: There’s many people associated with the International Institute for Psychiatric Drug Withdrawal and the PSSD Network, for example, who are trying to coordinate funding into awareness and research to figure out mechanisms of action. And one of the things they're looking at (in addition to significant changes in gut microbiota) is small fiber neuropathy within the autonomic nervous system. I read through a lot of articles and a lot of information on multiple sites, trying to determine, would it be pertinent to get tested? There's a working group in Finland right now of neurologists who are primarily testing people with PSSD for small fiber neuropathy. But what is very interesting, and also unfortunate, is even though all of them are presenting with almost identical symptoms, only half are testing positive for small fiber neuropathy. But their determinations, based on the work they've been doing over the past year, is that most likely it's not a situation where the people who are testing negative don't have it. It's most likely false negatives, because the instruments available to test are so out of date, they aren’t accurate. Neuropathy in general is an incredibly complex field with small fiber neuropathy being even more complex and under-researched/under-funded, which leads to inadequate diagnostics for the problems at hand. There are all sorts of current debate on best treatment practices and discoveries of course are still ongoing, so as a person it’s always a debate of: is it actually worth it to go down this rabbit hole to try to figure out exactly what is going on, especially if I am going to be gaslit, condescended to, and potentially traumatized by the medical system all along the way.  

I asked my doctor-would this be pertinent? Having this info would not only be useful to have some concrete words to describe my situation, but it would also probably ease some of my stress. It would be so much easier to interact with all medical professionals because I could at least then give them some words that they understand. Words and terms which prove that I'm not an idiot, I'm not crazy, and I'm not just making things up. You can’t win in interactions with doctors: either you don’t sound articulate enough so you must be stupid or you have too much (actually accurate and intelligent) information so you must be crazy (and also there’s no way you, a person without a PhD or a medical degree, could possibly understand scientific literature…). We talked about this for a couple hours. It was a great conversation, and we really walked through it. She said something I thought to be a helpful and wise perspective which was to walk down the entire path of what might happen: you get seen by the right doctor, they actually will do investigative testing, they recommend treatments that you may not actually be able to get access to, etc. It is a grueling undertaking experiencing undiagnosed and/or rare disease for sure.

Bethany McCraw: I'm still having all these different symptoms. My leg is wasting on the right side. Nobody can say why. It's part of the MCAS. It's my system attacking my own tissues. It's the autoimmune disorders at play. But my testing mostly looks great. Because of this phrase though, I can send a picture of my leg and say, Look! You can see the bone under the skin. There's no meat around it anymore. I can feel my body killing my own tissues… It's fucking crazymaking, to be told, your tests are great! While literally watching and feeling, my tissues waste away, over months. It’s not happening for no reason! 

• When my docs say now: Oh, yeah, looking good, Bethany. 

• I now ask, so what is your deferential diagnosis for this? 

• And when they say I don’t know, then I say ‘You don't have a differential diagnosis?’

• Let's send me to someone who does? Because this is not coming from nowhere!

How can I be making this up? My fucking leg is going away. It’s now also starting on the left. But my docs aren’t curious in the least. I have to advocate for every inch of my care, my diagnoses, my treatments, everything. It’s so exhausting, on top of the illness.   

Laura Bernas: Are you interested in any sort of like therapeutic suggestions? I've studied a little bit on all kinds of things. 

Bethany McCraw: The email you sent about the DNA is super interesting. But honestly, once we get into such territory, it’s beyond me. I have a curious mind. I always want to know more, but there are some things I can’t ever understand fully. It’s an aspect of my neurodivergent presentations. Math and calculations make my brain hurt. DNA stuff falls into the math category for me. I have trouble processing information which is presented in mathematical codes like DNA is. My brain is wired for language, and I am hyperlexic, creating an imbalance known as dyscalculia. It’s like dyslexia, but for numbers and math, instead of for letters and language. DNA, I think, falls into a mathematical pattern. It's all these sequences. My mind starts to swim with that information. I can’t process it right, and it isn’t just I can’t do the math- trying to do so causes instant migraine pain. Now also with the long covid brain fog I have, it's hard for me to read extremely technical journals on this level. I need disability accommodations for this type of thing. Similar to someone who was born without legs and so needs help climbing stairs, I simply wasn’t born with the brain legs for math stairs. It’s another type of invisible disability, and also a spectrum too. It doesn’t relate to intelligence, and I am capable of memorization, which is how I got by so far in life with this disability being overlooked. I memorized enough math to do simple calculations like the arithmetic needed to pay bills and understand enough to do basic everyday math tasks. Memorization, and calculators. I carried them everywhere way before they were on our phones. But the real technical and scientific math-mind needed to study DNA? I’m not sure I can do it. 

Laura Bernas: I know of a former music therapist who is autistic, based in Australia, who completely changed her therapeutic practices. She's literally in the community, she primarily focuses on, the nervous system disorders in relation to autism. You should also seek—also based in Australia--women with ADHD, Sari Solden, SARI. And Michelle Frank.

Bethany McCraw: I have done some cursory searches. Looking for different sources for late diagnosed adults, it's quite challenging to find. Especially for women. Because autism is so under-diagnosed in women. 

Laura Bernas: I just had a thought. Bethany, have you ever done the safe and sound protocol, the listening protocol?

Bethany McCraw: I'm not sure.

Laura Bernas: Steven Porges developed this listening protocol that uses the frequency of the middle ear to send safety to the Vagus nerve. 

Bethany McCraw: Yeah, ok, yes, this is familiar now I think of it. This is partly why I make the EDM music I do. It stimulates the inner ear canal and shifts vagal states. Have you done it? How do you do this protocol? 

Laura Bernas: Yeah. I'm doing it right now. And it's quite helpful. 

Bethany McCraw: Yes, I find it helps a lot with is the vestibular balance issue, it helps with my POTS dizziness and also helps a lot with the dyspraxia and aphasia. Yes.

Laura Bernas: Have you ever looked into Neil Nathan, who is a doctor who focuses on MCAS? I haven't done a really comprehensive search. But I know other people that have used him and have had success. The other thing I’m finding quite interesting is the Perrin technique. Most of the practitioners are in England. But there is a global network around it. You can look on their site and find global practitioners. I know people who have recovered with their methods. It took time. It's not something that is a quick fix. One of the things I was reading about the average amount of time that someone does it is something like over 2 years. That video was really fascinating for me, because one of the things I've always thought, is there’s a commonality happening across all of these diseases.

All these different disease pathologies could be some form of neurotoxicity, and the neuroception of the brain as it should. And there's clearly some sort of activity on the nervous system itself, but the signaling ultimately up from the body, and down from the brain, is what is acting on all these things. It very much makes sense to me, all sorts of connective tissue disorders are involved in our affected systems. We also don't know much regarding fascia and how it gets affected here. It’s very under-studied. But all the newest fascia research now is showing, this is not just connective tissue. It's acting more like an organ system. It’s an internal sensory system which is sending information to the organs, and up to the brain. Fascia is deeply connected to the nervous system.

Bethany McCraw: Fascia acts almost the same as skin, but inside the body. We get information from our skin constantly! Our skin is our largest organ in the body and the fascia is the second one, but no one ever talks about it. 

Laura Bernas: Yes, there’s another woman I'm gonna mention, Jill Miller. She is probably one of the foremost experts on fascia, in the whole world at the moment. She's been doing this work a really long time. 

Bethany McCraw: I've been asking my doctors about fascia for 30, 40 years. Back in the day when I was well enough to work and perform and do all the things that I was supposed to, I could afford to get regular bodywork, and it really helped. Every single massage therapist, or acupuncturist, or anyone who ever did any bodywork on me always said, Oh, my gosh! You need fascia release! I would ask my doctors about it repeatedly, but they would say things like, “you're  too young to have these pain issues. You're too female to have these pain issues. You're too this, you're too that. Medical gaslighting. Since I didn't have any health insurance my entire adult life, from age 18 to age 55, every symptom, every pain, every aspect of my suffering, was dismissed, minimized, gaslit, or ignored. I had no idea how much iatrogenesis I’ve encountered all my life, until very recently. It’s staggering.  

Laura Bernas: Can we please, for the love of God, work together? It’s the bare, the very barest, minimum, and the bar for success. We should be heard at least at the bare minimum, to simply address quality of life, and then to next possibly find some sort of healing. If and when that's possible. It's a real thing.

It’s a piece a lot of people are not focusing on now, with Long Covid. It’s the fact, this is new for everybody. However, there are populations of people who actually have been living with these conditions for much longer. It’s now acknowledged by these communities, but for myself, almost no one in the US even acknowledges what I'm experiencing. No one will even acknowledge that this is happening. And again, not many incentives for, but many incentives against.  Political and economic, primarily, that are incentivizing people not to acknowledge this is happening. Psychiatry is another example. Please, US doctors, would you genuinely acknowledge the data that has come out of the UK?!

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Bethany McCraw: But CNS communication is a two-way street. Finding a doctor who actually says, and understands, Oh, your body has this condition that is affecting your mind. They don't see it this way. But this all gets back to: We are only one piece! The two are physiologically inseparable, body and mind. At its core we are just: a brain inside bones inside meat. All depends on the brain, made of pretty much the same meat encasing our bones. Our brain function depends on the nervous system. You cannot have health without a working nervous system. It's not very possible to be otherwise. Whether it's damage from medications, damage from a car accident, say if your spinal cord is severed; damage from PTSD, damage from undiagnosed neurodivergence, damage from unsupported, invisible, disabilities.

There are so many angles from which nervous system injury can come. Yet, especially in the case of women, and especially in the case of minorities and other intersectional types of socioeconomic demographic, it's all routinely minimized. It's all routinely minimized as psychosomatic, or hypochondriac. It’s doctors all routinely saying, “This is all in your head”.

Where is the doctor who will say, “Oh, you have a spinal cord injury! How is that making your mind feel?” It’s one of the biggest elephants in the room, along with the fascia and the connective tissue problems, all the “invisible” stuff which doesn't show up on regular scans. Because the right scans aren’t widely available. 

The way viruses damage a nervous system is not dissimilar to how trauma affects your nervous system, and thus affects every organ in your body. All your thoughts, all your emotions, all your processes.

Polyvagal Theory is all I have to give my system as much of a break as possible. Without rest, there is no healing.