S6E13 Highly Sensitive People and MS with Psychotherapeutic Counsellor Rachel Burn

Overcoming MS  00:00 

Welcome to Living well with MS. This show comes to you from Overcoming MS, the world’s leading multiple sclerosis healthy lifestyle charity, which helps people live a full and healthy life through the Overcoming MS program. We interview a range of experts and people with multiple sclerosis. Please remember all opinions expressed are their own. Help others discover Living Well with MS. If you enjoy the show, please rate and review us wherever you listen to podcasts. And now let’s meet our guest.   

Geoff Allix  00:35 

Welcome to the latest edition of the Living Well with MS podcast. Today we are talking about highly sensitive people with MS with UK council for psychotherapy accredited psychotherapeutic counsellor Rachel Burn, hopefully I got that right. Welcome, Rachel.  

Rachel Burn  00:53 

Hi. Thanks for having me.   

Geoff Allix  00:56 

So to start off with an introduction, so could you introduce yourself and your work as a therapist?   

Rachel Burn  01:02 

Yeah. So I’m a psychotherapeutic counsellor, with the UKCP, which is what you just said there. So I work. I’ve been doing that for about four years now. So quite recent. I was a dancer before that, I was a performing arts theater person. And in my therapy work, I work like really long term with clients. And we explore a lot of unconscious stuff and childhood stuff and build a relationship that creates safety for a client to be able to resolve for themselves, whatever it is that they’ve come to therapy for. I find it to be very rewarding work. And I love it. Yeah.   

Geoff Allix  01:46 

And also, you’re a person with MS. So apparently you were diagnosed with MS not long ago. Can you tell us a bit about your MS. Journey? And also about Overcoming MS. And have you adopted that?  

 Rachel Burn  02:04 

Yeah, yeah, absolutely. So I got the sort of official diagnosis in a written letter and an interview session with a neurologist in September last year, so only kind of seven months ago. But I’d had an idea before that. So I’d had quite, my MS is relapsing remitting. And I’d had an idea of it, since I’d had quite a bad episode in March-April of 2023, where my vision went very blurry. And I’ve had double vision and my balance is poor. And I was getting the different shades of color in different eyes, you know, see blue, different colors, different shades. And just YouTubing, I began to wonder about MS. And at that time, I had lots of MRI scans and all of that. And so when I got the official diagnosis, it was still a shock. And I had a moment with my partner have we both welled up with tears and held hands and just took a moment, but it was confirming what I thought. And it was following sort of four years of these episodes. Was it 2019 during the first lockdown, I noticed I was in therapy at the time and I noticed my therapist that might my balance wasn’t very good. And I was so frustrated. I’m just must be really stressed about COVID. My balance is bad. And I began to get very double vision where I was cycling, I can’t remember the order of things when the first lockdown opened up. I was working in a pub at the time. And I was cycling sort of 13 miles to the pub and getting double vision during the day and cycling back and on the towpath that I ride was going field,tree, towpath,tree, towpath, canal. I was having to ride with one eye shut, all bit disturbing and I just thought, oh stress stress anyway and it subsided. I had a few more episodes like that until it was confirmed last year. And what happened then, when I was wondering about MS. On YouTube, I went to YouTube for information, as lots of people do and I found all the terrible stuff. And I’ve been plant based veggie vegan for about 12 years and I was thinking oh my goodness if it was MS. Am I gonna have to start eating red meat? I don’t want to eat any meat. I don’t want to eat red meat. How can I source this really responsibly. And actually, the neuology nurse said to me that she found some research she’d been sent some research by OMS said if you’re interested in diet, I’ve had this sent to me, you could have a look at them. And I found it. And I thought, Oh, this is amazing. I felt such relief. So I started following that. Yeah.   

Geoff Allix  05:15 

Yeah, that’s that’s quite unusual actually to have your MS Nurse point you in that direction.   

Rachel Burn  05:21 

Yeah, I’ve heard so. And I think it was because I was telling you that, you know, there’s this woman Terry Whals and she’s healed her MS. And she was saying you can’t heal it. You can’t. I was saying, I really think that diet must have a massive impact. I don’t know, in what way but she said, Okay, well, there is this thing. So I don’t know if she was recommending it, but she was following my lead. But since when I’ve had phone calls with the nurses, I’ve said about this diet, and I haven’t had any relapses,  not significant anyway. And I’ve said, you know, I really think this is, if people are open to considering their diet, I really think you should recommend OMS. 

 Geoff Allix  05:59 

So if you’re pretty much vegan already, I guess it was pretty straightforward. And obviously, you’re in a sort of mindful field. Yeah, you ticked quite a lot of the boxes already, I guess.   

Rachel Burn  06:12 

Yeah. I mean, I guess I haven’t, I haven’t experienced it as a big shift. Really, in terms of diet. I have loads more flaxseed oil. I take a vitamin D supplement. I make sure to eat lots more green vegetables, you can be a Lazy Vegan. I was a very lazy vegan.  

 Geoff Allix  06:28 

The vegan aisle in the supermarkets is not the place you want to go. 

 Rachel Burn  06:32 

Really horrid. And I’ve never eaten too much of that stuff. But I absolutely don’t touch it now.   

Geoff Allix  06:38 

So yeah, I do think it’s that sort of whole food plant based, because you can, because there’s ethical vegans that’s a sort of separate thing. And you can be an ethical vegan and have nothing to do with anything to do with animal products at all. And, and yet, not actually eat healthily. I’m guilty of that previously. And now, I’m sort of, I have to be a little bit wary about saying vegan because I wear like a leather belt. And have been pulled up on me before but when I’ve said I’ve said it, like in a vegan restaurant said, oh, you know, they said that you’re wearing this like, is that a real leather belt? So it wasn’t a health thing it’s ethics. And same with that I have honey, I don’t have no objection towards having honey, and not having too much sugar. But you know, yeah, I don’t, I don’t really see its problem that the bees, personally, ethically, but I know that ethical vegans don’t like to have honey and things like that. So yeah, yeah.  

 Rachel Burn  07:37 

I mean, it’s interesting, because actually, my partner of about four years, he’s been an ethical vegan for most of his life. So we sort of sit somewhere in the middle. I mean, I have leather shoes. But plant based for health makes a lot of sense to me.   

Geoff Allix  07:57 

And so there’s obviously a massive shock for anyone to be diagnosed with MS. So would you recommend that people who are diagnosed with MS get a therapist to actually work with them?  

Rachel Burn  08:14 

Oh, I mean, I recommend therapy to anyone at any time, because I feel like it can be just such a valuable support that brings you outside of your life. It’s a little pocket in your week that’s outside of your life, and no one is going to give you any platitudes. And you know, the therapist isn’t gonna give you platitudes, and they aren’t gonna give you any kind of empty condolences or even sympathy really, they’re just gonna let you process what you need to process. So yeah, I would I mean, it is a big diagnosis, isn’t it? And I know that none of us ever know our future. But we have an idea of what our future might be. And finding out that you have MS can really throw all of that idea of your future up in the air can’t it? So I think that therapy can be such a helpful space for just processing the enormity of what that could potentially be. You know, some people have really supportive family, etc, who can be that space. But for many people, it’s helpful to have a little pocket in their life, in their week that is not influenced by their ongoing relationships.  

Geoff Allix  09:35 

Because there are loads of different types of therapy. So if you’re in that position, you think, yes, it would be useful for me, how would you decide what sort of therapy to go down? And how would you decide which therapist you wanted to use?  

Rachel Burn  09:49 

Yeah, yeah, I know that this can seem like an absolute minefield to people who are first starting. I mean, I suppose overall, I would say that the research shows that clients. Successful therapy, as named successful by the client, is reliant far more on the quality of relationship that you have with the therapist than on the type of therapy that you do. That’s overwhelmingly shown up in the research. So whatever kind of therapy, someone chooses to, to start, the thing that really matters is that you feel like you can connect with your therapist, you feel like you can build a relationship with them that you can be honest. You can bring your worst self to a therapy session, and they will still be there for you, still hold you, that’s a therapy term, hold the space for you. And I guess in terms of the type of therapy, people just like different things, so there’s the kind of cognitive behavioral therapies that can be quite kind of present tense, and they’re thinking, they’re using your thoughts to adapt your behaviors, maybe something like dealing with the enormity of a diagnosis, I work more on the humanistic integrative psychotherapeutic side, which is much more of a open space for the client to bring whatever it is they need to bring. And it tends to be a bit longer term. I mean, both have their absolute values at different times in people’s lives or for different purposes. So really, it’s about fitting with a therapist. And I always say to clients, you know, get in touch with a few therapists, let them know that you’re going to see a few therapists and have an initial session with three or four people and see who feels comfortable to work with the person you feel comfortable with is the person you’ll do some effective work with. That’s the key.   

Geoff Allix  11:53 

It’s one of the pillars of OMS to look after your mental health as well. So I mean, just as part of that, what what are emotions, because it’s kind of it’s almost uniquely human. I was just thinking about this, actually. My dog is sitting next to me. So she does have emotions, but they’re fairly limited to sort of happy, sad, hungry. They’re not complex emotions. But what are emotions? What they do what they, what is it all about?   

Rachel Burn  12:27 

So I mean, this is an area of research that is being like totally kind of exploded at the moment, there’s so much more research going into this in the last 5-10 years, maybe. And it’s fascinating. So the thing that we share in common with all animals, maybe certainly the higher animals higher, you know, what I mean? Is the emotional part, that is a chemical reaction. So it’s, chemistry isn’t my thing. But emotions are a physical chemical reaction that happen in our body to do with hormones, peptides, transmitters, transmitter, sorry, receivers, on the receptors on the cells throughout our body that receive this cocktail of chemicals. And then we have a physical response. So it’s those chemicals that have responded to a signal in the environment that creates a physical response in us, whether it’s, you know, the knot in the stomach, or hair standing on end, or getting very hot, or whatever it might be. And that’s the physical part, called the emotion and then the part that humans do uniquely, is we named those different feelings. So all animals have emotions, but only humans named them feelings. And that’s where it gets really complex. But so the emotion in your body is a wave of a chemical response. And it lasts about 90 seconds, whatever feeling it is, so whether it’s happiness, or anger or sadness, it’s a wave of these chemicals. And then it subsides.  

Geoff Allix  14:18 

So if we’re holding something like, you know, you think, Oh, I’ve been worried about something for the last two days. You’re actually just, like, you’ve got a 90 second cycle effectively, that actually, you shouldn’t necessarily have to continue with that. You’re like, oh, you know, I was I was feeling that emotion for two hours with actually with lots of lots of different 90 seconds. Is that sense?  

 Rachel Burn  14:42 

Yeah, I think that can be and that can be also when our when our when they become feelings and our cognitive brain gets involved saying, I’m feeling sad, I’m feeling worried and the thoughts start churning. we perpetuate the emotion. We keep it going and we can kind of hold on to it that’s probably uniquely human, we sort of hold on to it until we can get to a place and that mindfulness practice helps with this, obviously, of being able to set ourselves slightly apart from our feelings and notice it and let it pass. Which isn’t easy, is it? That’s the challenge. 

 Geoff Allix  15:22 

I get that 90 second thing because it’s kind of like you just, you can do like, there’s there’s mindfulness practices where you just take a pause. Craig Hassed does a little pause meditation, and it’s just to take you out of that, but, but it does take that sort of, little bit of time, like, you’re like, another minute, and then you’re like, Okay, now I’m calm, but you can’t just switch off can you? It’s not instant. But you go through that little cycle of after after a couple of minutes, and you can put yourself in a different mental state. So the opposite of that would be if you’re repressing your emotions, so what, what’s the situation there? If you’ve got a repressed emotions? And is that a healthy thing to do to try and avoid it? 

 Rachel Burn  16:06 

Yeah, yeah. I mean, so you, you said it exactly ther. You said, you know, there’s 90 second wave, you can’t switch it off, it’s just that wave happened, the thing is that we can switch it off, except we don’t switch it off, we just push it down. So through our lives, depending on your family, your local community, our society as a whole, we all would have received and have received so many messages about what emotions are acceptable to feel, and express, and which ones aren’t acceptable. And they can be ones, you know, they can be gender specific, you know, “boys don’t cry,” “girls shouldn’t get angry.” Or, and they can be. They can be about positive, positive in inverted commas, because all emotions actually neutral, but big happy feelings as well, if you’re brought up by a family that is really struggling. So you’ve got a parent or two with depression, and they can’t cope with your big feelings. And even your big happy feelings you might learn are not acceptable. And in order to preserve the relationship with the caregiver, we have to just shut down the feeling. So that’s what all of us, I’m certain have done. We’ve learned to repress the feelings that aren’t acceptable. And so when it comes up, this chemical reaction happens, we would get to a point as an adult, when we don’t even know that we’re doing it, we just go. Nope. Not feeling that. And it gets halted somehow. And that’s the whole area that I get interested in to do with emotions and autoimmune conditions, because what is the impact of that chemical reaction?  

 Geoff Allix  17:52 

Yeah, it’s gonna say Is that a bad thing. A good thing? Could be either? 

 Rachel Burn  17:57 

Yeah, I mean, the there’s a lot of researchers to say that that’s a bad thing, that we can create disease in ourself by continually shutting down emotions. Do you know the author Gabor Mate? So his book When the Body Says No, is made, essentially of 1000s of interviews from when he was a medical practitioner, with people with all sorts of diseases and conditions that they are living with. And he takes interviews about their kind of upbringing and their emotional livelihood, and has kind of collated this huge body of evidence to show that people who’ve had to shut down their feelings can create disease in their body. It’s contentious. But that’s that’s what a lot of research is showing.  

 Overcoming MS  18:48 

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 Geoff Allix  19:05 

Certainly I think with OMS there’s definitely a connection. There’s a brain-body connection going on? I think, for sure. I think that’s why it’s one of the pillars is you know, look after your mental health. So we’ve mentioned highly sensitive people at the beginning, so you’ve got a particular interest in the intersection of highly sensitive people and people with MS. So firstly, what is a highly sensitive person?  

 Rachel Burn  19:28 

Yeah. Okay, cool. So highly sensitive person is a term coined by Dr. Elaine Aron, in the early 90s. She wrote a book called The Highly Sensitive Person. Her research was about this. Why do some people respond in more sensitive ways than others? She gathered a lot of this research and created a survey which quiet there’s a straightforward survey which I can link actually, on my Live Well Hub profile, I’ll link the survey if people are interested to complete it. It’s like 25 Questions about ways in which you might respond more sensitively to an environment or to pain or to an emotional setting or to food than other people seem to. Her research indicated that between 5% and 15% of the population are highly sensitive. So it’s a minority, it’s not tiny, but it’s the minority. It is significant. Yeah. And I definitely I would say that it’s more than 5% to 15% of my client load are highly sensitive. So I make the connection also, that our society at the moment is not built for sensitivity at all. It’s built for like, go go push at all costs. And it can be that highly sensitive people struggle in that environment, and think that there’s something wrong with them. But there isn’t anything wrong with them. And sensitivity isn’t a condition. It’s just a character trait. It’s just that being more sensitive to many things than a majority are. So we’re talking about high sensitivity. And really what I’m interested in, and I don’t have the answer to this I’m curious about it, I’d like to start a conversation is whether there is an overlap between people who have autoimmune conditions, MS or any other autoimmune condition, and being highly sensitive, so that I contacted Elaine Aron last year to ask if this research had been done, and someone from her team got back to me and said that they weren’t aware of it, but go ahead. I am no kind of professional researcher. So I’m just starting conversation. But I would be interested whether amongst the population of people with MS or with autoimmune conditions, there is a greater than 15 to 20% population of HSPs. Particularly, we’ve been talking about emotions, and particularly because emotional sensitivity is a massive factor of high sensitivity. So you know, I know that OMS recognizes the role that stress plays in triggering and progressing MS. And colloquially, we use stress to describe just a whole range of emotions that we find difficult to process, whether it’s anger, whether it’s sadness, grief, disappointment, fear, a period of time when we’re experiencing those emotions, we would describe as quite stressful period of time. That emotional crossover, there is something that, you know, I see in my work and I’m interested in, but I want to find this out. I’m going to post the HSP questionnaire on my liberal, her profile, I’m not particularly active there at all, but I will be more. And maybe if it can be posted with this podcast. I would love to just begin to gather some data and some conversations and find out if there is any overlap. Also, this is just occurring to me. If somebody is listening to this, and they have the skill set for research, they know how to conduct proper research in a scientific way. I don’t have that skill set. So I would love to please get in touch with me. I would really like to pursue this. Just out of interest. Maybe we can work out a way to conduct this research in a bit more of a scientific way. 

 Geoff Allix   

And so if someone’s sort of gone through, so we’ll put links in the show notes and everything as well. So people can have a look at that. And if someone thinks they might be highly sensitive, what resources would you recommend for someone who thinks they want to have more reflective practices into their life?  

 Rachel Burn   

I think, firstly, if they do the survey, if they’re interested, do the survey then. And they see that they score more than 14 out of the 25 or six questions, then it can just be an enormous relief to think, oh, oh, okay. I am actually sensitive, I’m not just making a fuss, I’m actually more sensitive than other people. And then with that knowledge, to really be able to make boundaries and make space for yourself to have the time that you need. I mean, there’s a crossover, there’s a bit of a crossover with introversion, highly sensitive people can be both introverted and extroverted. But there’s a sort of similar idea where someone who’s introverted might just know, actually, I don’t want to go to a big party. And that’s fine, because I’m introverted. And recognizing your high sensitivity can give you the permission, because so many people need to be given permission, rather than being able to give it to themselves. I know that for myself to know that it’s okay to need to be a bit particular about the way that you have decorated a room or how much stuff you tried to fit into a day, or what are some other things whether you like, I mean, I find whether you like to FaceTime somebody whilst they’re cooking, or something, which I think for a lot of the sensitive people I’ve talked to, it’s too much overload. And they have that they can have the permission to say, Actually, I just need a phone call, can I please just have a phone call, it’s one mode of communicating, it can help give a sense of permission for that. So that’s the first part in terms of being reflective having a reflective practice just to notice that it’s okay that I’m like this and I can actually adapt myself to, to what feels manageable for me, and that is okay to do. And then I really recommend journaling, and any creative practice, I always go to some creative place, actually, maybe even before journaling, because journaling requires words. And I think sometimes we can be really helped to go into a state of flow or just something a little bit outside of our cognitive wordy place, and be non judgmental towards ourselves. And that can be a healing practice in its own or just, you know, recuperating energy practice in its own. Also journaling. However, people, however, people journal because that’s quite unique to the person can be really helpful.  Yeah. 

 Geoff Allix   

And so how can people like find more and connect with you and learn more about about this and about your work?  

 Rachel Burn   

Yeah, so I have my counseling website, Rachael Burn Couselling.co.uk. I think that is and there’s a bit of information about me on there. And I have a contact page if people want to get in touch. I sometimes think I might set up a newsletter. I’ve done a blog previously, but that’s different at the moment. But if people are interested in that sort of work, then send me an email through there. And I really recently set up a TikTok account just to talk about therapy things. So I don’t particularly talk about autoimmunity or MS there, but therapy and how to manage your emotions, that’s, @born_a_bodymind on Tiktok. 

 Geoff Allix   

It’s good to hear social media being used for positive things. There’s so much bad about a lot of social media, when you sort of see I mean, we’ve got a YouTube channel for this. And we feel like so there’s, there’s so much information out there as well isn’t there but it mean, there is a lot of terrible stuff is just, but when you realize actually that there’s lots of people are doing really good resources. Well, that’s just really nice to hear.  

 Rachel Burn   

Yeah, there’s so much isn’t there? And it’s lovely when you get into what like finding OMS and Oh, my goodness, there’s all of this resource and all of this stuff that that it can be so helpful. Yeah. Wonderful. 

 Geoff Allix   

So this is a question we always ask at the end of these, which is that what advice would you give to your newly diagnosed self now or to a newly diagnosed person now that you know what, you know?  

 Rachel Burn   

Yeah, this is a bit tricky, because I’m so recently diagnosed. But I was thinking about this and thinking there’s a way in which I almost don’t know if I have processed the diagnosis yet, because also it’s relapsing remitting. So sometimes I have it, and sometimes I don’t have it, you know, which is a bit confusing. But something that I’m still telling myself to do, is to lean into community. So I’ve been following the OMS program, but it’s only been since chatting to Gina, you know, and having got in touch with you. That I’ve really thought actually, there’s a whole community here that will be valuable. So I think for me to lean into community. And also to take it seriously, but not panic, I had a panic moment. And I don’t think that helps. So take it seriously, take all of the cares seriously. You know, it’s taken me a while I’m a therapist, and it’s even taken me a while to think how can I be making sure that I’m emotionally well, and letting that emotional wellness be as much a part of my overall well being, as a person with MS as I have taken on the diet? You know, that’s like such easy practical stuff to do. And it’s taken me a while to think there’s definitely, we’re human, so there is definitely an emotional component in my immune system attacking myself. I really believe that there has to be in some not that it’s more than the dietary stuff or the physical parts, but it’s in there. So to pay attention to that and to take all of that seriously. Not to feel like I need to soldier on you know not to pretend that I’m not not to pretend that my eyes are okay, if I have got double vision to not still ride my bike. That’s a silly thing to do.  

 Geoff Allix   

I have double vision as well and you do, you think oh, well, I can just shut one of my eyes. That’s in retrospect, madness.  

 Rachel Burn   

Yeah. And I was still riding on the road. I couldn’t see anything out of the right. I couldn’t understand the picture on the right side. And I was still cycling on roads. Why? So silly. 

 

Geoff Allix   

Anyway, with that, I’d like to thank you very much for joining us and do check out the show notes because there’s lots of lots more information about anyone that’s interested. Thank you for joining us on the podcast. Rachel Burn.  

 Rachel Burn   

Thanks so much for having me. Been lovely to chat.  

 Overcoming MS   

Thank you for listening to this episode of living well with MS. Please check out this episode’s show notes at overcoming ms.org/podcast you’ll find useful links and bonus information there. Don’t forget to subscribe to the podcast so you never miss an episode. And please rate and review the show to help others find us. This show is made possible by the Overcoming MS community. Our theme music is by Clare and Nev Dean, our host is Geoff Allix. Our videos are edited by Lorna Greenwood, and I’m the producer Regina Beach. Have questions or ideas to share, email us at [email protected]. We’d love to hear from you. The living well with MS podcast is for private non commercial use and exists to educate and inspire our community of listeners. We do not offer medical advice. For medical advice please contact your doctor or other licensed healthcare professional.