PTSD and CPTSD with Rachel Bilksi, PTSD UK

Our guest is Rachel Bilski from the charity PTSD UK. PTSD stands for Post Traumatic Stress Disorder and is typically associated with veterans. However, it isn't only veterans who can develop it – And Complex Post Traumatic Stress Disorder, CPTSD, is less well known and, therefore, can take longer to diagnose.

Rachel's lived experiences of CPTSD contribute to her work as a lecturer and supervisor for the Minded Institute for Yoga Therapy Training Institute.  We put your questions to Rachel during this conversation and learned about the differences and nuances between PTSD and CPTSD.

We look into the complexities of emotional flashbacks and the varied manifestations of symptoms that can profoundly impact daily life.
 
If you are experiencing any issues discussed in this podcast, please contact your healthcare practitioner.

For support

• PTSD UK
• Paul's blog (RE "brave")
• Rachel Bilski's blog (emotional flashbacks)
• Down to Earth Yoga Therapy

Hosted by Chantal Boyle and Paul Shriever, Hidden Disabilities Sunflower.
 
If you enjoyed this podcast, please leave a rating and review.

Find out more about the Sunflower by visiting the website hdsunflower.com

Music by "The Emerald Ruby" Emerald Ruby Bandcamp and Emerald Ruby website

Transcript

PTSD and CPTSD with Rachel Bilski, PTSD UK

Speaker Key:

CB      Chantal Boyle

PS       Paul Shriever

RB       Rachel Bilski

00:00:00

Welcome to The Sunflower Conversations, where we explore the Hidden Disabilities Sunflower and its role in supporting people with hidden disabilities.

00:00:09

CB      

Thanks for joining us today on the Sunflower Conversations. Your host, well, me, Chantal, and my colleague, Paul Shriever. Hi, Paul. How are you today?

PS       

Very well, Chantal. Thanks for inviting me, guys. It's good to be here.

CB      

Our guest is Rachel Bilski, who works for the charity, PTSD UK. Rachel is also a lecturer and supervisor for the Minded Institute for Yoga Therapy Training. We'll find out a little bit more about what that actually means. Rachel has lived experience of CPTSD, and joins us to explain the differences between the two. So, we have had a lot of interest from the Sunflower community.      

We put a post out to ask our audience, what would you like to know? And so, we're going to be covering off those questions as we journey through our conversation today. So, thanks to everybody who submitted a question. Many people have heard of PTSD, which stands for post-traumatic stress disorder, which is, I think, typically associated with veterans. However, it isn't only veterans who can develop it. 

And complex post-traumatic stress disorder, which I believe is less well known, and therefore, can take longer to diagnose. But Rachel is our expert, who joins us today, and she is going to help answer the questions, and dispel some myths, and give us some tips and pointers. So, thanks for joining us, Rachel. How are you today?

00:01:39

RB       

Thank you so much for having me on. I'm really excited to be here. And I love that you've kicked us off with the myths and the misunderstandings surrounding the condition, because this really is such a passion of mine, to dispel these myths that it only affects veterans. It's a very common thing, so I'm really glad that that's the tone, in which we're starting this conversation today.

CB      

I guess we should perhaps just also talk about your experience. I listed off a few things that you do. You don't only work for PTSD UK, and I know that the various professions in which you're working, all contribute to your success in what you're doing for PTSD UK. So, would you mind just explaining to us briefly what you lecture in, and what is the Minded Institute for Yoga Therapy?

RB       

Yes. The Minded Institute is one of the world's leading yoga therapy training institutes, and yoga therapy is an emerging health profession, in which we apply yoga practices, yoga and mindfulness practices, to physical and mental health conditions. And possibly the most prominent difference between, let's say, a yoga teacher and the yoga therapist, is precisely the level of training required.

00:03:05

So, to become a yoga therapist, it's usually a two-to-three-year master's level diploma. And this is so that you have a really solid understanding of neurophysiological mechanisms behind certain conditions, psychotherapeutic skills. There's a whole lot included beyond just the teaching and sharing of yoga practices. So, generally, people coming in at that level are already either yoga teachers or healthcare professionals. 

And it's really just taking that understanding to a new level, so that we can work in multidisciplinary teams with other types of healthcare professionals. So, I've been doing yoga therapy for a while, and I'm really blessed now to be lecturing and supervising, and guiding other yoga therapists through that training process.

CB      

That sounds like such a fulfilling passion that's developed into a great career.

RB       

Yes, absolutely. And what's fascinating is really my own journey through it, in that I had misdiagnosed CPTSD. I thought it was anxiety and depression for ten years. And interestingly, where therapy, so all different forms of psychotherapy, CBT, and also, medication, did not help me with my anxiety and depression. So, it was really chronic, and going on for a very long time. 

And it wasn't until I found yoga by a happy accident, I certainly wasn't hanging around in yoga circles back when I found it, and I was quite cynical and sceptical of the practice. And yoga and mindfulness, specifically, actually, really, really helped me to create the sense of safety and regulation in myself that allowed me to shift out of these really debilitating symptoms, I later discovered was actually CPTSD. 

00:05:03       

And what's been very interesting for me, in my line of work, is that the further I go, the more I understand, both in myself, and academically, the more I realise that yoga is actually a really, really powerful treatment for PTSD and CPTSD.

CB      

You are listening to the Sunflower Conversations with Chantal. To learn more about the Sunflower, visit our website. Details are in the show notes.

PS       

Rachel, can I just jump in there? Is this something you stumbled across, doing yoga? What made you, because clearly, that is something that has worked out as being a real help and aid, and an answer to you. And I'm interested to know, how did you come across that? Was it recommended? Was it something that you just thought, I'm going to try it, and then you found out that it was something that really helped you?

RB       

So, ten years ago, to be honest, I was so desperate, by that point, with my symptoms, I could not manage them. Nothing I tried helped me at all. I got to the point where I thought I was broken, and there was just no chance of fixing what was going on with me. And in absolute desperation, like, truly in a very, very dark place, I was writing, almost like you would at New Year, a list of things to do, to make yourself feel better. 

00:06:26

And they would have been taken from magazines or TV shows, or something, because I certainly wasn't in contact with anybody doing any of these practices. And meditation was on one of those lists, in an almost cheesy, cliché way. Try meditation. People talk about it, it might help. I went to a meditation class in Brixton in London. Hated every single second of it. I thought, I'm never going back here. I had one eye open, judging all the people around me. 

And interestingly, I got home, and just something shifted. It wasn't this big, dramatic thing. It wasn't some life changing moment. But I think I'd been numb for a long time, until that point, and I just started to feel a little something. And it was just enough for me to be curious enough to download a new app called Headspace, which I truly believe saved my life. 

And I just did ten minutes a day of mindfulness for a long time, I was quite consistent with it, and that started to shift things for me. To a point where I was then a little bit more open, and maybe a little bit less cynical, about other such similar practices. But about a year after this, I was on a trip, I think it was a solo trip to Southeast Asia, and I thought that I was going to be partying with strangers, and all of this, and I just got really sick on the way. I got tonsillitis. 

So, it was a very, very practical, logistical reason why, when I landed in Bangkok, instead of going to the islands, or whatever it was I’d panned to do, I thought, I need to get better first. And I've heard about yoga retreats, and maybe that's a good place for me to go and restore myself. Maybe I'll learn something more about this meditation thing. 

00:08:16

And again, I went in very closed minded, very judgemental, didn't expect very much. But after that first practice and first class, I cried my eyes out for a long time, and I felt a lot of stuff come up to the surface. I didn't understand it then, the teacher that guided me didn't understand it then, but there was a lot unfolding in me during that first week. And then I shifted from my original plan to just attending retreats. 

It took many, many years for me to understand that yoga had been the thing that started to bring me out of what was, at that point, a decade of really, really deep suffering.

PS       

It's really interesting to think that it's something that you've worked out. That's the bit that I find interesting, that you can't… I don't know, I have this idea of I’ll go and see somebody, and hopefully, they'll give me a solution. Actually, in life, sometimes we have to find it out ourselves, don't we? And sometimes, that is through trial and error. So, we will try something, and it won't work, and then we'll try something else. 

And actually, it's not one thing that fits all. It can be something that actually works specifically with you, and clearly, yoga is something that has really helped you.

00:09:30

RB

I love what you’ve just said there, because this highlights the power of yoga therapy, to me, that in yoga therapy, we look at the individual, and all of the different layers of their experience, and we apply practices based on that. So, it's definitely not a one size fits all approach at all. It's looking at the whole matrix of what has affected that person, and what has caused the confluence of symptoms, or whatever they're presenting with. I was very lucky, I think, to have found it in the way that I did.

CB      

Let's talk about what is PTSD, and what is CPTSD? Let's get to the heart of what it is and why this has helped you.

RB       

PTSD, post-traumatic stress disorder, is a condition that some people develop in response to a traumatic event. So, after witnessing or experiencing something traumatic. And traumatic events tend to be defined as something that overwhelms our capacity to cope and respond to something that is life threatening, usually, or very, very serious. A serious injury or a threat to life. 

And this can cause feelings of not being safe. Feelings of what we call hypervigilance, where we're looking for danger, constantly scanning for danger. And it can really affect our sense of control. So, it feels like life is out of control, like we have no control. It's estimated that about 50% of people, and I actually think these estimates are quite low, personally, but 50% of people experience something, some kind of trauma in their lifetime, so a traumatic event. 

It's part of the nature of being human, the human condition. So, I think experiencing trauma is very common. But it's estimated around 20% of people, and, again, I think, a low estimate there, but 20% of people who experience a traumatic event, then go on to develop PTSD as a clinical condition. 

00:11:41

And this is where the symptoms, or the difficulties that one experiences in the initial aftermath of a traumatic event, such as re-experiencing the event through flashbacks and nightmares, difficulty sleeping, difficulty regulating the nervous system, feeling very akin to feeling anxious and panicky, and also, having upsetting memories, feeling on edge, all of these things, if those symptoms don't fade away within a few weeks to months after a traumatic event, then that's usually when PTSD will be diagnosed, if it becomes debilitating to daily life. 

And I think the important thing to note, to tie it back to the beginning of this conversation, is that PTSD was only recognised in 1980, and the context of that was research involving Vietnam War veterans. And so, in the collective mind, there's this connection between the Vietnam War and veterans, and PTSD, as a condition. 

And it being something, therefore, that only veterans, or people that have been through war experience, and actually, there's even a deeper history there, that PTSD used to be called shell shock, that it was, again, something that was associated with people who had been through war.

PS

Was it always after? It's not during, because the trauma is when you're in it, right? So, those soldiers, when they were in Vietnam, they were going through that. It's when you come home, when it's done.

00:13:21

RB       

That’s a great question. I would argue that a lot of people are going through a lot of the symptoms during the trauma, absolutely. And if it's an ongoing or prolonged trauma, then yes, I think it's very common for you to be experiencing the symptoms during that, I think post, in that, it's very difficult, if you're in a prolonged, traumatic situation, it would be very difficult to stand back enough from that to register that what you're going through is problematic. 

I think, when you're in survival mode, it's almost like a normal reaction. The symptoms are a normal reaction to an abnormal situation. So, it's when they start to affect you outside of that traumatic event in your day-to-day life, that they become what you might term disordered. So, PTSD is, more often than not, not always, but more often than not, associated with a single traumatic event.

Whereas complex PTSD is where there is exposure to more chronic, or prolonged trauma. And this delineation really explains the more complex reactions, and the more complex nature, of course, of the trauma that caused them.

CB      

Okay. That's really good, because that was a question that was coming through a lot from the community, as well, what is the difference? So, just to reiterate. So, post-traumatic stress disorder is from one single event, usually. But the complex is where there has been repeated trauma and then that's what puts in the complexities of it.

00:15:11

RB       

Generally, yes. Single event trauma tends to be more associated with PTSD, whereas if it's repeated, long-lasting, continuous, then that's more likely to be CPTSD. But there are also some differences in the presentation. So, it's not just the causes, but the symptoms, as well. So, both conditions are defined by the re-experiencing that I was talking about, memories, flashbacks, difficulty sleeping, as well, very common. 

Avoiding situations that are reminders of the traumatic event, hypervigilance or nervous system dysregulation, and feeling really fearful and unsafe around people and experiences in life. And there might also be some negative changes in beliefs or emotions that come along with all of that, as well, quite understandably. I think both conditions make you feel intensely afraid and unsafe. I think that's a really characteristic symptom. 

But with CPTSD, we have these three additional clusters of symptoms. We have difficulty with emotion regulation, interpersonal difficulties, and an impaired sense of self-worth. And the fascinating thing about these three additional symptoms with complex PTSD is that they can look like personality traits, and so it's very, very common for them to be missed. 

And, in fact, CPTSD was only clinically recognised, and not even really widely recognised still, but technically recognised in 2018. It was the World Health Organization's International Classification of Diseases, I think it's the ICD 11, recognised complex PTSD as distinct from PTSD in 2018.

00:17:17

CB      

If you are concerned about any of the subjects discussed in the podcast, please follow up and seek support from your healthcare practitioner.

RB       

If you think that PTSD, itself, is as old as humans, I believe, I strongly believe. And there are actually references to stuff that sounds like PTSD in ancient Indian texts. The Bhagavad Gita, for example, has what I think is quite a clear definition of PTSD. And there are many, many examples throughout time, where people have referenced something that sounds like PTSD hundreds, thousands of years ago.

CB      

Of course, it stands to reason, right, because of the evolution of human beings and how we've interacted with each other since the beginning of time. It stands to reason. 

RB       

Through traumatic events forever and ever. And so, it's fascinating to me that we only recognised it in 1980. You compare that to other similar conditions, similarly prevalent conditions, like depression or anxiety, for example that have got a good, roughly 100 years of research and understanding behind them versus 1980, or even complex post-traumatic stress disorder is 2018. 

CB      

That’s so recent. 2018, gosh. 

PS       

Incredible.

CB      

So many people needing support.

RB       

Whilst it's recognised in the ICD 11, which is 2018, the last update to the DSM, the DSM 5, which is, generally, the manual on which diagnosis is currently based, certainly, here in the UK, and that was last updated in 2013. So, as far as the diagnostic process goes here, in the UK, the information is outdated. And so, really, what we're seeing, certainly through my work with PTSD UK, is that there it's potluck, basically, as to whether you get a clinician, whether you get a GP or a healthcare professional who knows about CPTSD. 

00:19:26

And this is why such a huge part of what we do is just quite simply raising awareness. We've got quite a long way to go with that, I think, and why I'm particularly grateful that you've created space for this conversation here, because many, many more of these conversations around this distinction between these two, very similar, but also, distinct conditions, needs to be made.

PS       

Was this something you were diagnosed with? Were you actually properly diagnosed with it by a doctor?

RB       

This is great a great, great question. So, yes, I was, but only almost 20 years after I first started experiencing symptoms.

PS       

That, again, for me, just highlights how everything is so nuanced, especially within the mind, and how things cross over. It’s, like, oh, have you got depression? Are you suffering from anxiety? It's something I've experienced. What's the difference? Well, I'm not quite sure. I feel very anxious, but then I feel very low. Is that linked to some trauma? Okay, well, you may have PTSD. It's how you define that and how somebody extracts that information and says it's that.

00:20:44

RB       

Coming to terms with the CPTSD diagnosis, for me, actually, it probably helps to go a little bit further back than that. As I said, I was diagnosed with depression and anxiety, and really tried so hard to treat those conditions, but I wasn't addressing the root cause, which was the trauma that I went through. And it wasn't until I was able to address that, that I started to make changes. 

And interestingly, it was a self-discovery that it was PTSD through reading a really seminal work on PTSD, called The Body Keeps the Score by Bessel van der Kolk. And when I read that book, again, I cried every single page, I cried because it was just a pure recognition, like a deep knowing that what I went through was traumatic, and what I subsequently experienced, the suffering that came after, was related to that trauma, and not separate from it. 

And not something wrong with me, it was something that happened to me. And I think what was interesting is that the therapeutic avenues I explored for a decade, truly different kinds of therapy, different therapists, nothing worked, because I was just regurgitating traumatic experience and memories, and being retriggered over and over again. 

CB      

So, you knew what the trauma was. You didn't have to regress, to find out why you were having these symptoms. You knew what it was, and just going over and over and over it again was adding to the complex trauma.

00:22:18

RB       

Well, this is the fascinating thing. We’re speaking in the early 2000s, more or less, so we've come a long way since then, in terms of recognition and understanding. But in many different therapy sessions with many different therapists, I was laying down what was very clearly a traumatic experience and a prolonged, ongoing, traumatic experience for me as a child, and not once did anyone mention trauma, PTSD. 

That that experience was maybe why I was having panic attacks, and why I was unable to get out of bed, and why life was so difficult, And so, really, as I said, it just it made me feel broken, like there was something wrong with me. 

CB      

How old were you when you started, Rachel, experiencing the symptoms of trauma?

RB       

Probably, it could have potentially been earlier, and I wouldn't have had the self-awareness to know, but I think I identify with the symptoms from about 11 years old. That's when I had my first panic attack. And panic attacks were very common for me between the age of 11 and about 21, 22.

CB      

Can you explain, for people that have never heard of the term panic attack, what that felt like for you?

RB       

You’re pretty convinced that you are going to die. Your heart rate increases, breath rate increases. You find it very difficult to breathe. You start to hyperventilate. The walls close in, and your rational, logical brain is completely and utterly inaccessible. It just feels like everything is a threat. And it's a symptom. It can be a symptom of anxiety. And so there's crossover there. 

00:23:56

But also, now I understand, PTSD, I realise that actually, I was just retriggered many, many times, and was having this really intense re-experiencing situation, and I wasn't aware of what it was. And it wasn't until I was retriggered later, at a time in my life where I was feeling very well, very grounded, very stable, everything was good, then a trigger came out of nowhere, and I had this full blown response reaction. 

And it wasn't until the aftermath of that, that I ended up diagnosed with CPTSD, because it was very clear that this was an incongruent response to something that wasn't even traumatic, or particularly difficult. It was just a reminder of something from the past, coming up as though it was very, very present. And only in that process did I get diagnosed with CPTSD. 

And even then, the diagnosis really was I saw psychiatrist, and they said, this certainly sounds like complex PTSD, because they were aware of it. But because the NHS is mostly guided by the DSM-5, which doesn't yet recognise CPTSD, it was more of an understanding than necessarily what we might call a formal diagnosis.

CB      

Can I just go back to the symptoms a bit? So, emotional regulation, interpersonal skills, and an impaired sense of self-worth. So, is that something that a person with CPTSD would feel every day? Or does it rise and fall, as the panic attacks maybe don't come every day, they rise and fall, as well? Is it an undulating experience with CPTSD, or is it an everyday experience?

00:25:49

RB       

I would say, as I've got older and wiser, and a little bit more regulated, it's much, much less prominent. But I think there are so many variables, that actually, it's impossible to give, again, impossible to give a one size fits all answer to that. I think, for a lot of people, it will affect them every single day. It depends on how much support you have, and how much awareness you have, and so many different things that might affect that. 

I think, for me, the trickiest thing with CPTSD versus PTSD is that I very much identified with having flashbacks a long time ago. In the immediate aftermath of traumatic events, I would certainly have nightmares and very visual re-experiencing. And so, because when I was reading up about PTSD, many years later, I was no longer experiencing that kind of re-experiencing, I thought, it's done. It's in the past. That's something I identify with, but I no longer have. 

What I've since learnt is that actually, probably throughout my life, in a way I never used to be aware of, I've definitely had what is understood to be emotional flashbacks. And this is more commonly associated with CPTSD. And this might be where this is where we have a re-experiencing, in terms of the intense emotions and the nervous system dysregulation associated with that traumatic event. 

00:27:29

So, the feelings that you’ve had during the trauma can come up in the present moment in response to something where it's not really appropriate. Something small, or something innocuous, can trigger this really full blown emotional response, and then this heightened nervous system state in tandem with that. And it’s a kind of regression. It can be quick, or it can last weeks, even. That, for me, I always thought that was a personality thing. 

I always thought, I just feel things intensely. There have been times where I've had to lock myself in a bathroom and weep, because of the intensity of this. It's like grief that suddenly appears out of nowhere, and makes no sense to whatever is unfolding in front of me, and that’s confusing. 

CB      

So, you could just be watching EastEnders, for example, and it can just bubble up.

RB       

Yes. For me, it's often with interpersonal stuff, which is, again, a very common thing with CPTSD. So, it could be that somebody’s tone of voice, or their facial expression, or something they've said can trigger a response that is, in my rational, logical, wise self, I understand that that's not a big deal. But then it's this part of me comes up very quickly, and it takes me back to childhood, and I don't even realise it. Now I do. Now I understand it. 

But for many, many years, I wouldn't understand how or why this was happening, and there would be this full blown response. And I never knew that had anything to do with trauma or PTSD, or CPTSD. I just thought, I feel things too intensely, and I need to hide that. 

00:29:17

PS       

Did diagnosis, in any way, help you come to terms with your condition?

RB       

100%, yes. Because it made me realise that this is something that is with me now. And by that, I don't mean that it's with me like a heavy burden that I carry every day, but it's something that helps me to be aware that it could come up again. That no matter how together my life is, life happens, and therefore, triggers might happen, and therefore, symptoms might happen. And for me, I've been able to be a lot more kind to myself about that. 

And through that kindness, through that almost spaciousness around it, I guess, rather than trying to repress it, or box it away, or something that's fixed or done, for me, there's this sense of it being ongoing, and something that makes me part of who I am.

PS       

Can I just ask something that's a little bit personal? Have you got friends and loved ones around you, who you could lean on?

RB       

Yes. And this has been a really big thing for me, and, again, where I'm blessed in the ability to articulate it, and talk about it, and communicate with others. And I think this is something that's very difficult for people with PTSD and CPTSD, because there's this overall sense of lack of safety. People, places, and situations not feeling safe. And it's also very confusing. CPTSD, in particular, is really characterised by confusion around what's happening and why. 

00:31:06

And so, the capacity to articulate what you're going through is challenging, in itself, before you've even considered whether or not the people you surround yourself with are accepting and non-judgmental, and able to have these conversations with you. So, I've been really, really lucky in that respect. And I do think that's a really important piece. And also, to speak to something else you just said. 

I think, in terms of the diagnosis and the label, if you like, for me, it's been a process of really owning that, and knowing that whilst I have CPTSD, that's one part of me. That doesn't define absolutely every single bit of who I am. And in owning the diagnosis, and turning towards it, rather than turning away from it, what has happened is that each time I feel myself get a little bit triggered, I remember quicker. 

I remember more quickly that this reaction, this response that's unfolding in me, is incongruent to what's in front of me. And therefore, I need to turn towards my tools, which for me, is very much about self-regulation. And this is why somatic approaches, I think, are so important, because it's more often than not, the body's signals that show us, or tell us, that there is something a little bit off, or that we might be heightened, for example. And it's that, that's the alarm bell for me. 

When I first start to realise, okay, I'm heightened here, or my emotions are a little bit incongruent here. And with the level of mindfulness, self-awareness, and self-regulation that I've developed, that process has become a lot easier to spot. I'm able to intercept, before it controls me.

00:32:54

CB      

I think that brings us quite nicely on to what does PTSD UK do to support patients? If somebody comes to you, how can you support them? What are you doing? Because one of the overwhelming questions that we've had is, can you completely recover from PTSD or CPTSD? And I'm picking up, from what you're saying, that you can learn to manage it better, and learn to manage the responses to it, so they're not maybe as extreme. But are there cases when people are free of it?

RB       

I'm smiling because there are so many different threads here. 

CB      

Sorry. 

RB       

No. It's brilliant. I think the importance of languaging, the importance of language. A lot of people are calling for it to be called post-traumatic stress injury, rather than disorder, in that it's something that happens to you, and then you have a normal response to something that's happened to you, and you can heal from that injury, and recover. Now, that's one perspective, and that's certainly helps a lot of people. 

And I think in the case of single event trauma, from what I've seen through the various windows of my work, I think that's absolutely the case. I think once you heal the injury, you can consider yourself recovered. The question, then, is, what happens if a trigger comes along out of nowhere, and that process starts all over again? 

00:34:21

Do you then turn inwards and blame yourself, and think, oh, I was never recovered, and this is with me forever, and be harsh on yourself about it?             Or do you see that as a new incidence of PTSD that you are recovering from? Or do you see it that you were never recovered in the first place, and your system is, perhaps, different than other people’s?    

Now, I don't have an answer on this, but in my own personal experience, I prefer the idea of being in recovery. But for others, the idea of being in recovery for their whole life is terrifying. Terrifying. Who would want these symptoms for life? Who would want to believe that something could come and trigger you out of nowhere? So, again, I think there are individual differences here.

CB      

Are there different scales, depending on the trauma someone has experienced? For example, someone who has experienced neglect and abuse in their childhood, would they be on a different scale spectrum to someone who had trauma from being in combat?

RB       

Whilst I appreciate the potential usefulness of some kind of scale, in terms of the spectrum of ways in which PTSD might present, I actually think that this notion of scaling trauma has held a lot of people back from accessing treatment and support, and thinking, my trauma is not big enough. I haven't been to war, and therefore, it can't be PTSD. 

And that couldn't be further from the truth, because it's all relative. Whether or not somebody develops PTSD is dependent on a really complicated matrix of their personal experience, their resilience, how their life is at the time, whether or not they received support after the traumatic incident. There are so many factors, I could go on. And so, someone might go through war and not develop PTSD. 

00:36:34

Whereas someone else might witness a road traffic accident, not even be in it, but just witness it, and suffer debilitating symptoms for months or years afterwards. And this is why I absolutely love the work of PTSD UK, because we offer support to everyone affected by PTSD, no matter the trauma that caused it. To access our services, you don't need to tell us what kind of trauma you've been through. You don't need to tell us whether it was a single event or chronic. 

You don't need to tell us whether you've been in war or not. But we just have this really, this, this openness to that. And I think the delineation between different groups. In some settings, it's really important, because peer support is important. So, for veterans, for example, speaking to other veterans that have been through that same experience, there are a lot of domestic violence groups, for example, or sexual assault. 

These groups are important, in that they provide peer support of other people who have been through the same experience, and that's invaluable. So, it's definitely not to say that delineating by type of trauma doesn't have its uses, but in a more generally speaking sense, particularly when we're talking about accessing treatment and support, I think understanding PTSD as one condition, and putting everybody together in that, is really important. 

00:38:05

I think I've gone around the houses, but it brings me to the question that you just asked, Chantal, about what we do. Right now, it’s a lot of information support. So, our website is really rich with information. We're often working in high-risk communities to raise awareness around the condition. We also offer support via email, so people can reach out to us, one-to-one, via email. But at the moment, we don't have things like support groups, peer support groups in person. 

CB

So, at the moment, it's online support. 

RB       

Yes. 

CB      

Do you have a helpline, as well?

RB       

No. So, this is the thing. So, the next stage for us, we're in the process of applying for funding, left, right, and centre. We've got support groups, project plan, we've got helplines in the pipeline.

CB      

It's actually quite shocking, to be honest. Because, as you said, this has been something that individuals have experienced since the beginning of time. And when you think about the state of our society, and the, let's face it, frankly, terrible things that people have to experience and endure, for one reason or another, the fact that your charity is under-resourced, it's a crime, really, isn't it? There should be a lot of investment in supporting people who have had traumatic experiences.

RB       

All of our funds have come from the generosity of supporters and fundraisers. We receive no government subsidies, no regular funding of any kind. We're now shifting towards thinking much bigger ourselves, but we have, quite simply, been limited as to what we can do by very, very simple, logistical facts. And we're working towards shifting and changing that. I don't know if you've seen, but Jacqui, our CEO, was recently awarded an MBE for services to people with PTSD. And it's the very first of its kind. 

00:40:15

PS       

I’ve been reading about that. 

RB       

And with that, there's been a huge jump in awareness of who we are and what we do and the fact that we exist. So, I think we're on the cusp of some pretty exponential growth and big shifts for us, as an organisation.

CB      

Well, anybody listening to this, do check out the PTSD UK website, and see the information that they have got that can support you. And if you don't have PTSD, and you would like to make a donation, then I'm sure there is a donation button on the website. It's really, really important for everything that Rachel has been going through and discussing with us so far. 

We have got a few questions, more that we really want to cover. I am passionate about language used around trauma. Words and phrases can be very powerful. Does PTSD UK have an opinion on this? Perhaps phrases or words commonly used that they feel are detrimental to healing CPTSD, both conditions?

RB       

For me, yes. The languaging and the subtleties around the languaging that we use around PTSD is vital. But I think what's equally important are the misconceptions that people with PTSD are dangerous, or that they can be aggressive, or cause violent outbursts. There are even popular TV shows that that show military veterans as having these aggressive outbursts, and then that gets associated with PTSD. 

00:42:01

And so, I think it's the misconceptions around what PTSD is, who it can affect, and therefore, how we speak about it, how we reference it, that is important to me.

CB      

That's really crucial, because representation, we talk about that a lot in the podcast, don’t we, Paul? Where if you don't see yourself represented in the true light on the television, particularly around mental health, which is always perceived negatively in films, TV programmes, if somebody is experiencing difficulties with their mental health. 

You need to see the realities, actually, that it’s not always to create the dramatic storyline, which these things are used for. Actually, let's see the reality of what that can be like for an individual. So, I think that's really good to talk about representation.

RB       

More and more people are coming to us to review scripts. 

CB      

Are they? Now, that is good. 

RB       

Yes. We've informed BBC, ITV, even Warner Brothers, a Warner Brothers film. So, thankfully, people are starting to wake up a little bit to representation around PTSD, and languaging, as well. People asking us really interesting questions about the way that we speak about PTSD. So, I'm really glad that somebody raised this, because I think it's a really important debate.

00:43:30

CB      

So, does PTSD or CPTSD change how the brain functions, compared with those who don't have either of those conditions?

RB       

Yes, absolutely. We see big changes to the brain. So, some of the symptoms, actually, of PTSD are specifically caused by these differences in the brain. And probably, I've thought long and hard about how to simplify the neuroscientific understanding of PTSD. And one of the most helpful things for me has been to acknowledge this brain structure called the amygdala, which I like to think of as a smoke detector. 

Now, everybody has this smoke detector that tells you when there's a threat. And it kicks off this cascade of physiological reactions that help you to deal with that threat. So, it's a really useful brain structure. It's a really useful part of the nervous system. But what happens in PTSD and CPTSD is that the amygdala can become overactive. And this is where we see the symptoms of hypervigilance. 

So, with that smoke detector analogy, I like to think of it as putting the smoke detector above the toaster. So, something as simple as making toast is going to make that smoke detector go off. And that understanding, for me, has been really, really helpful. Another important point is that we have this amygdala, this threat detector, shall we say. 

00:44:06

And then we also have the prefrontal cortex, which is the rational, logical part of the brain. The part of the brain that allows us to think clearly and appraise the situation in that rational way. Now, the prefrontal cortex and the amygdala have an inverse relationship, which means that when this structure, the amygdala, is overactive, and it's seeing threat everywhere, this structure is underactive, and is unable to engage in rational, logical thought. 

And one of the interesting things about mindfulness, and I think why mindfulness was so powerful for me, is that this really bolsters and strengthens the functioning of the prefrontal cortex. 

CB      

Okay, great. 

RB       

So, when we do that, naturally, the amygdala pipes down a little bit. This is a massive oversimplification here, but it means that we can start to engage those more rational, logical appraisals of situations, rather than everything being perceived as a threat. I was actually in Asia recently, and I was doing some client work in yoga therapy, and I came up with a new example that really helped me to communicate this, in that I don't know if you've ever been to Asia, and you can relate the same, a tuk-tuk to a car. 

But if you're in Asia, there are tuk-tuks, often flying around. And a little bit more difficult to see flying around the corner than perhaps a car might be. And if you step out into the road, and at tuk-tuk comes, the likelihood is that you're going to get that jolt of adrenaline, cortisol like threat, and you feel it. You get that increase in muscle tension, your heart rate or breath rate might increase. 

00:46:43

PS       

Adrenaline. 

RB       

Yes, exactly. But then the tuk-tuk passes, and maybe you're in a conversation with someone, you realise the threat is gone, you carry on the conversation, and you carry on crossing the road, and you get to safety, and you're fine. Now, that's the average response, right? The nervous system kicks in, does what it needs to do, and then calms itself, once the danger has passed.

RB       

In someone that's that has PTSD or CPTSD, or in someone that is feeling somewhat triggered, definitely, what you'll find is that the tuk-tuk comes, you experience this reaction, and then you can't calm yourself down. That explains something very, very complex, I think, in a somewhat simple way, hopefully.

CB      

Well, I think this is the point of what we're doing here. It's trying to give everyone, including us, some understanding and insight into what it’s like and what it feels like, to enable us to semi put our feet in somebody else's shoes, to then actually be able to build up that understanding, empathy, and support environment and network. So, I think that's a great analogy. Can see PTSD because by several forms of trauma, or just the same, one repeated?

RB       

It can be several forms of trauma, definitely. It doesn't have to be the same one repeated. It's any prolonged exposure to traumatic events. And that might be a lot of different things that collide in a certain time period, as well. So, yes.

00:48:15

CB      

How can you support and help a family, friend, member, or anyone, a colleague, who has PTSD or CPTSD?

RB       

The symptoms of PTSD can be really difficult to live with, not just for the person experiencing them, but for people around them. Because you can see these dramatic changes in somebody that can be a bit scary, or upsetting, or overwhelming. If somebody goes from being the person that you know and love, to immediately, for example, in the case of CPTSD, experiencing sudden grief out of nowhere. 

Or if they suddenly start to re-experience a traumatic memory, then their system can go on high alert, and suddenly nothing and no one is safe, including loved ones. So, it's a really difficult thing. At times, it can be. It's not always, of course. But I think, as we've already touched on, it's difficult to articulate. And so, creating that openness around communication, and holding space for people to explain how they're feeling without judgement, and without trying to have all the answers. 

I think just listening, communication and really listening. Listening in a very active way, where you're not trying to figure out how to solve it, or what you're going to say, or what your part is, but just hearing what the other person is saying, I think, is really important. So, I think building that communication at times where the person with PTSD or CPTSD is feeling safe, and grounded, and regulated in themselves. 

00:49:57

So that when they are triggered, you have a map together of what they need. It might be that some people need a hug, they need to be held, they need that level of support. Others might need you to stay the hell away, and that's going to be different for different people. But it's very important that you that you're figuring that out from a place of safety, rather than trial and error in the moment when someone's triggered, because that's likely to go awry. 

You'll probably learn something from it, but yes, it’s really helpful to establish that trust and safety. I think another important thing is consistency, just consistency, again, in communication, but also, just in relational dynamics. Being consistently supportive, for example, is another big one. And expecting, maybe, mixed feelings, mixed emotions, and shifts and changes, depending on different triggers. 

I think that brings with it a lot of patience required, probably. But above all, just education. Educating yourself, getting to know more about PTSD, getting to know more about your partner or loved one’s triggers, and really encouraging them that treatment is possible. That there is hope for recovery, whether you see that as one time recovery, or being in recovery. But it is possible to live a good life, aside from these symptoms. 

It doesn't have to be that they’re debilitating all the time, and affecting every single aspect of your life. And really helping a loved one to see that, and encouraging that sense of hope, I think, is really, really powerful.

00:51:52

PS       

I think they are lovely words, Rachel. And what think that what I pick up on from that is that actually, there are core values in there that I think extend beyond PTSD. It's about just how you should treat people in life. It's about listening, and really listening. It's about giving people patience and being kind, and a bit of love. And I think if you've got those at the heart of that, then obviously, that filters out through it. But I think they’re core values and the essence of what we need a bit more of. 

And I think if you put that in place, obviously, depending on the condition, you have to be aware of that, and you've just been touching on that. But I think if you have those ingredients, then you're some of the way there.

CB      

What do you think about the Hidden Disability Sunflower?

RB       

What I love about that is, particularly for people with PTSD and CPTSD, is that for a lot of people, articulating that trauma is not necessarily helpful or useful, and yet, receiving support for the symptoms they might be experiencing is vital. And through the nature of human beings, nosey as we are, it may be that someone says, oh, I've got PTSD, and a very common response might be, have you been to war? Or what have you been through? 

And I'm telling you, very few people with PTSD or CPTSD are going to want to go into that, particularly if they're not feeling safe, or if they're with a stranger, if they're at work. And so, having that, being able to identify, as someone that might need a little extra support, but not having to necessarily verbalise it, or go too deeply into it, that's invaluable.

00:53:47

CB      

We do have cards on our website that say, I have PTSD, and people can put their personal requirements on the back of those. And we would like to, if people would find it helpful, also provide I have CPTSD, as well, if that would be helpful.

RB       

At PTSD UK, we also have communication calls, and we do have the CPTSD card, and it is immensely, immensely popular. So, I think that should be the next step for us and our partnership.

CB      

Yes. And also, to say that the thing at the Sunflower is that you don't have to tell anybody. You don’t have to tell anybody what you've got, you just wear the sunflower on its own, and it's still all the things that Paul mentioned just a minute ago about just being kind, and giving people space to be who they need to be in that moment. So, that brings us to the end of our recording. It's been fascinating. Thank you so much, Rachel.

PS       

Lovely, Rachel. It’s lovely to meet you. 

RB       

Thanks so, so much for having me. Yes, you, too. 

PS       

Lovely to meet you. Lovely. 

RB       

It’s been an absolute pleasure.

00:54:55

PS       

We wish you all the very, very best. And we found your website fascinating, as well. So, thank you for sharing and talking to us about PTSD. It's been brilliant.

CB      

If you are interested in any of the advice discussed in this podcast, please follow up with your GP or healthcare practitioner. If you enjoyed this podcast, please share it. Leave a rating and review to help raise awareness of non-visible disabilities and the Hidden Disabilities Sunflower. You can also follow and subscribe to The Sunflower Conversations Podcast.

00:55:37