MS: your emotions and feelings - live


15 May 2023

During MS Awareness week we aired a live podcast were we talked all things MS, emotions and feelings. Our recent survey of over 2,000 people living with MS, revealed that 56% feel that MS negatively impacts their mental health.

We were super excited to be joined by two excellent guests, who answered questions from the viewers:

Roshan das Nair
Senior Research Scientist, SINTEF, Norway
Professor of Clinical Psychology & Neuropsychology, University of Nottingham, UK

Dr Cora Sargeant
Educational Psychologist and presenter of Sciencing the s**t out of MS.

Episode notes

Read the episode transcript

Helena

Hi my name is Helena, I want to say hello to everyone. And thank you for joining us on this live stream of Breaking it Down, Multiple Sclerosis. This is the MS trust podcast. And today we're going to be talking about MS your emotions and feelings. And like I said, I'm Helena. And with me off screen is Nick. He's looking after all the comments and things today. We both work at the communications team here at the MS Trust, which is a charity to help people make sense of MS in the UK. And today we are going to go live across several different channels today. So I'm going to say hello to YouTube, Facebook, Twitch and Twitter. Obviously, we can't see you guys, you're probably eating lunch and I'm very jealous of you. During the stream today, we're going to be speaking to experts on why MS can impact so heavily on your emotions and how you feel day to day. And they'll hopefully be giving us some tips on how we can deal with these feelings and improve overall well being. So joining us live for this session today is Roshan das Nair. He's a professor of clinical psychology and senior research scientist at SINTEF in Norway, and Professor of Clinical Psychology and neuro psychology at the University of Nottingham in the UK. Coming in from Trondheim, I think in Norway, very exciting. And also we got Dr. Cora who is an educational psychologist and a person living with MS. So we're going to chat to each guest individually. And then we're going to open the floor for questions from you guys who are tuning in. And you can put questions in the chat on the various channels that you're watching. And Nick will try and pick up as many as we can answer after we've chatted to them. And now first, for anyone who isn't familiar with the work of the MS trust, we're here for everyone affected by MS from the moment of diagnosis and onwards. And we work towards making sure that people living with a condition can access good quality, specialist care and live the best life possible. We do this a number of different ways. By placing and training MS health professionals across the UK, including specialist nurses and advanced MS champions. We also produce practical evidence based information both online and in print, you might be able to see some behind me here that can be all sent after for free if you're in the UK. If you're not in the UK, and you're watching this, you can still access it online from our website. And finally, we have a friendly and knowledgeable enquiry service team that's available for anyone who wants to know more about MS. I'll tell you a little bit more about them at the end of the session. So we basically here to help make sense of MS. And as we mentioned at the start, we're a charity and we receive no funding from the government or the NHS. Its wholly due to the generosity of people like yourself who are watching and many of our fundraisers and people who support the MS Trust that we can sort of continue on our mission. And if you would like to donate towards the work that we do, the link is MS.trust.org.uk/donate. Now in this stream, we're going to be looking at emotions and feelings. We recently did a survey of over 2000 people living with MS in the UK, and it revealed that 56% feel that MS negatively impacts on their mental health. And the survey also revealed that the burden of living with certain symptoms is a driving factor behind declining emotional wellbeing. And in particular, the survey showed us that you find that fatigue, walking difficulties and bladder and bowel problems have the biggest impact on your mental health. With this in mind, during MS Awareness Week, the MS trust will be providing a number of resources that focus directly on the impact of these symptoms that have on your mental well being and hope we're going to be offering some tips and techniques to manage them and this live stream being one of them. And also this MS. Awareness Week we're working together with the MS Society, MS. UK shift at MS, Overcoming M, MS. Together, MS. National therapy centres to shine a brighter light on MS than ever before. You might have been to see on social media or campaign that's the hashtag MS makes me you should search for that hashtag and join the conversation. So in fact, before we hear from our first speaker Roshan, we're just going to start by playing a short video on some of the emotions you told us MS makes you feel.

Narrator 1 (from video)
MS makes me scared. I'm newly diagnosed. So I've got a lot to think about. I'm not going to pretend that it isn't bothering me because it is, but I am committing to myself that I'm not going to let this rule my life. And I'm going to try and get on the best way I can.

Narrator 2 (from video)  
MS can sometimes make me feel isolated. And I think that's because there's been times in the past where I've made plans and they've had to cancel because of a bad flare up, or because of a relapse. I think sometimes when I'm explaining how I'm feeling, it might feel a little exaggerated or a little dramatic. And I think it just makes me feel a little bit isolated. And not quite like people that don't have MS

Narrator 3 (from video)
MS makes me frustrated. It makes me frustrated because most of the times its an invisible illness, and people will assume that because they can't see anything wrong, that there mustn't be anything wrong. And that's definitely not the case. It also makes me frustrated because I've had to accept the fact that I can't and won't be able to do everything that my friends and people my age can do. And I can't plan ahead like my friends can. Because MS is predictably unpredictable.

Helena:
Yes, MS is predictably unpredictable. I like that. I think that's very, very, very true. So let's kick off the discussion then. And first, I'm going to bring on my first guest Roshan, who I've already introduced is a professor of clinical psychology and neuroscience, psychology. And Rocha has been on our podcast and webinars before when we were talking about cognition and MS. Very happy to have you back again Roshan and welcome. I hope you're well thank you so much for coming on the live stream.

Roshan:
Oh, thanks very much. Thanks for inviting me again.

Helena:
Alright, so shall we kick off and just sort of discuss a little bit? How can MS affect your feelings and your mental health?

Roshan:
Well, many people with MS will experience some difficulties with a mood problems, particularly during the diagnosis period. And during different parts of their MS journey, for example, during relapses, or when new symptoms emerge, and you know what, even in just general daily life, but the key thing to remember here it is that not everyone with MS does have or will go on to develop mental health difficulties. And your survey has also shown this up where you know, a significant number of people do experience these difficulties. It's not ubiquitous, it's not everybody who has these difficulties. The second thing to mention, I suppose, is that everyone with MS will have their own unique ways or experiences of MS and the psychological challenges that are linked to this experience of MS. So while people without MS, or those with other chronic health conditions, also have mental health difficulties, some unique features of MS make people with MS more vulnerable. For example, as you know, some people in the videos you showed us said -the unpredictability aspects of MS can make it very difficult for people to manage their emotions. So for example, in one study that we did, where we looked at unpredictability and how it affected people with MS, we found that it affected people's thinking, how they felt and ultimately also affected their behaviour. So what I mean by this is, you know, people had a perceived loss of control, if they felt that they lost their independence, their self confidence, and ultimately, you know, a sense of purpose. And that made them feel distressed, obviously, fear, anxiety, but also frustration and anxiety. And again, just like what people in the video said, but ultimately, what this meant was that this affected their behaviours. And typically what we found was people began to isolate themselves a little bit more, they will be more withdrawn. So these ways of thinking, feeling and acting come up during, as I said, the diagnosis process, during the relapses, but also during remission.

Helena:
And, obviously, you already kind of answered some of my next question here about how common is it because we've sort of run half of people in the survey, but has there been any sort of more measurement on how common it is?


Roshan:
Yeah, there have been various studies that have looked at the prevalence or the incidence of having mood difficulties associated with MS and to be to be honest, they've come up with different numbers. And that's predominantly because it depends on the way in which you measure mood problems. It also depends on the way in which you sample people with MS. But typically what we find is that it's quite spread. So we have people with mild problems. And these can be fluctuating, for example, but we can also experience people with more, we also see people with more severe problems. And people may experience these as being persistent. In terms of depression, most studies kind of point to where it's about 30% of people with MS are experiencing some form of depression. And put that into context. This is about two to five times higher than what you would find in a general population of people who don't experience MS. Another, another very common mood problem relates to anxiety. And this could include things like panic attacks, and this tends to affect about 20% of people with MS, which is about three times higher than what you would find in the general population. There are other forms of mood disorders that are also picked up, that these tend to be less common than typically depression and anxiety.

Helena:
So depression and anxiety, are there any sort of other more of the common emotions to experience or are those the two sort of the biggest ones?

Roshan:
Well, they are the largest ones that we find in the literature, but, but the way in which people experience these mood problems can be quite varied. So some of the common emotions that people experience, even with a condition like depression, you know, which is typically characterised by experiences of feeling sad, a loss of interest in pleasurable daily activities, you could also find that depression affects people in very many different ways. So for instance, some people report a loss of appetite, they don't feel like eating anymore, or they experience sleep difficulties. Or, interestingly enough, some people experienced depression, in terms of irritability and an increase in feeling angry or irritable. But others kind of can experience this in terms of an increase in fatigue, or a feeling of worthlessness or guilt, or losing interest in, sexual activities, for example, and yet others experience this in a more kind of a cognitive way, for instance, they find it thinking and concentrating a bit more challenging. And of course, you know, you have some people who also think about self harm. So you find quite a range of severity, but also a range in terms of the way in which some of these symptoms of depression manifests themselves. And if you think about anxiety, which I mentioned is another one of those kind of large group of, of signs and symptoms, you know, typically what would happen is that people may experience certain bodily sensations. So people tell us that they experience an increase in their heart rate, if you find that, you know, they experience dryness of their mouth, shortness of breath, some people experience some nausea, feeling like they want to throw up, tingling of their fingers, and toes, light-headedness, all these kinds of things, sometimes even restlessness or insomnia. These can be some of the bodily sensations associated with anxiety. So sometimes you may experience these bodily sensations, and you're not entirely sure what it is you're experiencing. But sometimes they could be more psychologically based, you know, so for instance, people with anxiety typically report constant or frequent feelings of worry, feeling out of control in decisiveness. But also, you know, sometimes people engage in slightly repetitive behaviours, or what we call ruminating thoughts. So you know, you get a thought into your head, and you keep thinking about it over and over again, and you can't seem to get it out of your head. And, you know, you may have some negative thoughts about the future. So all these kinds of things are some of the psychological ways in which people experience anxiety. Now, one thing to mention over here is, I may have repeated myself when I was talking about depression. And when I was talking about anxiety, and that's not a coincidence, not by chance, because anxiety and depression often tend to happen simultaneously, you know, so most people with some degree of depression or low mood would also experience some degree of anxiety. But typically, you know, a lot of people with MS also experience what are called adjustment disorders. So we conducted a review a few years ago, looking at various studies of with people with MS. In fact, I think there were over 130,000* people with MS from different parts of the world who took part in various studies, we synthesised all this information to try and understand what are the factors that are related to people's ability to adjust to their MS. And we found largely two types of factors, one related to yourself or internally, and one related to other people or kind of external factors. So internal factors related to things like our emotional response to a healthcare condition. So for example, you know, do we have negative thoughts consistently? Or do we have high levels of anxiety, versus, you know, someone who is bit more optimistic or hopeful for their future, so, you know, how people respond emotionally, can have an impact in terms of your future, ability to adjust to a condition like MS. We also have kind of potential personal attributes. In fact, you know, we, I was talking to your colleague, about, you know, this idea about optimism, and you know, how important optimism is, and we find that, you know, people who are generally more optimistic about life, tend to have better ability to adjust to new circumstances like MS, or new symptoms, you know, we also have found that people's attitudes towards the MS and the MS management also has an impact in terms of how they're able to adjust, we find those who can incorporate MS as a part of who they are a part of your identity, are better able to adjust than those who try to, to kind of not regard MS as having anything to do with them, although it's affecting them. So those are some of the ways in which we think internal ways of adjusting, or, you know, enable people to deal with MS differently. But as I mentioned, other people can also have an impact in terms of your ability to adjust. So for instance, the support and the quality of the relationships you have with others, has a definite bearing in terms of how you're able to adjust. And this can also deal with the professional support that you get, not just in terms of related to your healthcare, you know, health care support, but also the kinds of support that you might get at work, for instance. And it's also important to, I suppose, remember that, you know, it's not just the person with MS, but sometimes it's the loved one or your family members, who could be affected by you know, some of these changes that are happening with the person with MS. So it's important for family members to look after their own psychological well being also,

Helena:
We often talk about people being affected by MS. But that's not always just the person with MS, but it's all surrounding. On that note, so if people are starting to feel that it's a bit too much to handle, what's the best..what's the best approach here? :

Roshan
Well, I think there's a multi stage approach, I don't think there's a, you know, a one size fits all, kind of an approach or, you know, there are various things you can do. But I think the starting point for me would be to monitor how you're doing. And by this, I'm not talking about anything terribly complex, I'm just talking about, you know, checking in with yourself, you know, how am I feeling you know, or if you are feeling a bit jittery, if you're feeling a bit unsettled, ask yourself, what's causing me to feel unsettled now. So the reason I'm suggesting this is because you can then potentially act on something before it gets worse. And before you start feeling like it's all a bit too much for me to handle. So that's the first thing I would suggest you think about, how am I doing, checking in with yourself.. The second thing I'd like to mention is, you know, avoid avoidance. What I mean by this is that, typically when we get stressed or when we get upset, I think we have a natural tendency to avoid dealing with it, you know, in some cases, that's fine. What's worrying us might go away, you know, might disappear. But if you don't think it's going to go away or you don't think it's going to disappear, not dealing with it, is possibly going to make things worse in the long run. So it might be a good idea to come up with a plan on how you're going to address these issues. That brings me to my third point, which is talking to someone you trust. You know, the old adage, you know, a problem shared is a problem halved. And, you know, there was an interesting study that Age UK did, which showed that when people share their worries with others, it really does improve their situation. So like, over a third of people felt brighter, as a result of sharing their problems. So, you know, there is something about sharing the problems, but that, you know, this is with somebody you trust, and you have a relationship with. And sometimes it's also helpful to talk to somebody, you know, outside your immediate circle of friends, and, you know, or your family. So speak to somebody at an MS charity, like the MS trust, for example, the MS Society or other charities, or a trained volunteer, you know, as people with MS learn to adjust to live with a disease, and, you know, their mental and mental well being also improves over time as their adjustment improves. So, you know, if you're newly diagnosed, there may be others who have been, where you've been, who have gone through some of the struggles that you're going through and have come up with sometimes really great, innovative ways of dealing with some of these challenges. So speaking to them, might be one way in which you know, you could try and get some suggestions or tips from them. And ultimately, you know, if you're really struggling, you ought to really consider speaking to a healthcare professional, because they can, they can definitely do things to help you.

Helena:
And I think, you know, we certainly see on, both on social media by thinking in our Facebook group that most people do, it's that kind of recognition of people understanding what you're going through, and it really helps can open up that door of talking about it, because not, sometimes your surrounding don't really understand what you're going through. So it's just that kind of niceness of meeting other people that's even if they don't have the same symptom, or like the same level of MS. It's still like that kind of recognition.

Roshan:
Absolutely. And I think it's really important to do that. Because, you know, I think I think one of your first questions Helena was, you asked me was, you know, how does MS affect your mental health. But I also think it's so important to think about your own mental health, because we can kind of turn that question on its head a bit, and say, well, how's your mental health going to affect your MS, because there is this kind of bi-directional thing happening over here, because not only MS affecting your mental health, but how you feel and you know, your psychological health can also make your MS worse, in some respects, you know, if you're not dealing with, say, stressors, so for instance, you know, if you've got low mood, we know that people with low mood, as I mentioned, tend to avoid doing the same activities that they enjoy doing, or they once enjoyed doing, they stopped going out, they stopped socialising. And as a consequence of that, you know, we know that people have lower opportunities for mental and physical stimulation. And that can make for example, your cognitive functions, you know, your thinking, your ability to problem solve your ability to concentrate, it can actually make those cognitive functions a lot worse. So there is this kind of bi-directional aspect of mental health, and MS, which is another reason why it's important for us to talk about mental health and to deal with our mental health.

Helena:
I think it was really interesting that the way you turn it on the head there, because especially we mentioned before about sleep, or you know, when you get a thought in your head, and you can't get let go of it. If you're awake during the night, if you don't get sleep, we all know that your MS symptoms tend to get worse as well. So it's kind of it's, it's a bit of a joint circle there, isn't it?

Roshan:
Absolutely. Yeah.

Helena:  
And so people have told us that changes in their cognitive abilities have significantly affected their emotion. You mentioned a little bit about cognition. Do you recognise this from your own sort of clinical experience?

Roshan:
Oh, yeah, absolutely. Both from my clinical experience, but, but also from a lot of the research that others and we ourselves have done, because how you think and how we feel are very, very closely connected. So let me give you an example from some work that we've been doing recently in the UK. You know, we've been rolling out cognitive screening in some NHS Trusts in MS clinics. And what we've done is we've assessed people's mood and we've assessed people's cognitive abilities, you know, people's memory, problem solving attention, concentration skills, and what we find is  they are highly related, so those with who report higher levels and mood problems, also report higher levels of cognitive problems. And these are not just on subjective, you know, people reported measures, but also on what we call objective measures, you know, some of these kinds of brain training or brain exercises or puzzles, that, you know, if you've been to a neuropsychologist, your neuropsychologist might do some of these tests with you. So even on some of those tests, which we just seem to be objective, in some ways, we see an impact on those kinds of tests if people are reporting higher levels of mood problems. But what's also really interesting is when we've done studies of say, for example, cognitive rehabilitation, where the predominant focus of our rehabilitation is to enable people to deal with their cognitive problems a little better to improve, you know, the ability to remember to do things in the future, you know, to remember to pick up the kids from school or to support people in work. Although the focus of our efforts has been purely on cognition, when we look at outcomes, we find that actually people report that it's not just their cognition that is improved, but also their mood that's improved. So you know, whether we look at it from an assessment perspective, or from a treatment perspective, dealing with one relates to the other, so they are very closely intertwined.

Helena:
They go hand in hand, it definitely sounds. And so we've spoke a little bit about reaching out and talking to people, but if you go down the route of going to talk to  your GP, or you're going to actually sort of away from just talking to family and friends, what treatment options are there out there?

Roshan:
There are, there is now really a wealth of research, evidence suggesting that there are very effective psychological and medical treatments. I'm a psychologist, so we'll stick to talking about psychological treatments. But two things to mention really, there are, I think we need to focus not just in terms of treatment, but we also need to think a bit about prevention. Because you know, that, again, goes hand in hand in some respects, and it's really important to, for us to all of us to look after our own mental health, you know, so, for example, finding out what causes stress or worry or upset in daily life and, and finding ways to, to minimise this. So for example, if you're stressed at work, you know, perhaps carefully considering whether disclosing your MS status to your managers might be useful, because they may be able to make reasonable adjustments to your work, which might then in turn, reduce your stress. The other thing we can do in terms of prevention is this idea about resilience building. So you know, we've got research that has shown that maintaining good social connectedness, and social support is really important. You know, and some of this, you know, as we've mentioned, can come from your family and friends, but you may also want to join some MS groups, organised by MS charities, and see whether the other thing is, you know, it's really interesting that you could also look at what kind of support you can offer them, you can offer others, you know, with MS. Like, for example, some of these volunteer groups, you know, because we find that helping others really is a great way of helping yourself, in a sense, because it helps sometimes in sharing, not just your own experiences, but you know, your, your own initiatives that have helped you with others. And, you know, vice versa, they may come up with some suggestions from this, you know, that they found helpful. But talking about treatment, it's important to mention a couple of things. One is that not everybody benefits from all treatments, you know, so, you know, when I talk about effectiveness of treatments, I'm referring really to, on average, how does a treatment affect most people with MS. And the second thing to mention is that different types of treatments appeal to different types of people. So there isn't one type of psychological therapy, you know, there are different types of psychological therapies. So if you've tried one, and you feel, well, this is not for me, please don't give up there are different types of psychological therapies. And, you know, I know for a fact that I myself, you know, will not do well with some types of psychological therapies, but we'll do better with other psychological therapies. And then the other thing to consider is that sometimes therapies are offered in groups. And sometimes they're offered as individual sessions. And sometimes, you know, a combination of these. So, you know, figure out what feels right for you. But responding to your question, specifically about the treatment options, the psychological treatment options. As I mentioned, there are several types of psychological therapies. But I'll just stick to two or three, which have the most amount of research evidence that for people with MS. The first one, I suspect, lots of people have heard about it, because you know, we've been hearing a lot about it in the media is about Cognitive Behavioural Therapy, or CBT. Now CBT typically involves teaching people living with MS techniques about self monitoring of their of their mental state of the daily stresses that they're experiencing, learning to restructure the way in which we think about things, think about our stress and think about our life, and also teaching people problem solving strategies. And research has showed us time and again, that it's effective in reducing stress. It's effective in reducing depression and anxiety symptoms, and also improving quality of life. And there's also some studies, some studies that have shown that it has a knock on effect on people's MS symptoms also. What's interesting is that people, it's not just people with MS that have shown to be benefiting from CBT. In one review study that we did, looking at various health care conditions, we found overall CBT is beneficial in a whole host of different conditions. The second treatment option that I think has got a good evidence base is what we call behavioural activation. Now, this is basically a therapy which tries to help you to identify and engage in activities that are meaningful for you as an individual that you may have engaged in before. But you know, over time, because of various MS symptoms, perhaps you've stopped engaging in. And as a consequence, you've withdrawn from those activities, we find that it's really effective in various conditions, including MS. And we did a small study with people with secondary progressive MS using this particular type of therapy. And we found that for some participants, you know, it increased, engaging in this kind of therapy, increased the activity level. But we also saw that it reduced depression. And finally, the last type of therapy I want to talk to you about is about mindfulness based treatments, again, something that some of you may have read about in, in the newspapers or heard about more recently. And these could be a whole host of different types of therapy, some of them psychological therapies, but also relaxation therapies, yoga, meditation, music therapies. So one review that we did looking at the effectiveness of some of these types of mindfulness therapies, which included over 1000, people with MS, found improvements to stress to improving low levels of mood. So people with low mood showed an improvement of mood, it improves people's quality of life, and in some cases, some MS symptoms like fatigue and pain. So there are a whole host of therapies out there now, with some really good evidence showing that they're beneficial to people with MS.

Helena:
I think it's interesting because we all get different emotions. And clearly, there's different techniques for different people. And I like that because it's not like one size fits all. You can try one and if it's not working for you, there is other things to try, isn't there?

Roshan
Absolutely

Helena::
So my final question to you before we move over to our next guest would be so if what would your advice be to someone with MS? Or maybe if it's some someone who has somebody with MS in their family, you know, somebody's struggling with their feelings and mental health? What would sort of be your one takeaway thing? You've already given so many interesting things. But if there was one thing that you would say do this today?

Roshan:
Oh, gosh, that's, that's really hard to come down to one thing, but I think if I may…

Helena:
You may say more than one thing.

Roshan:
There are a couple of things, a few things that you could really, you could really try and do and as I said, you know, like, try and understand what's causing the stress? You know, is there anything you could do to address it, you know, if there is something that's bothering you speak to somebody: try and keep yourself active, you know, there's a whole raft of evidence that shows exercise is really, really beneficial. And even if you can't do strenuous exercises, because of some of the symptoms you're experiencing, just trying to keep yourself active is really important, particularly active and doing things that are that you feel are rewarding to yourself, you know, because that can help you with your mood problems. And I think the key thing to remember here is that mood problems are common amongst people with MS. There, are now as I mentioned, a whole our whole array of medical and psychological treatments that are available, that have been shown to be effective in treating these conditions. So, so please don't ignore these mood problems. Because there are things that you can do for yourself in dealing with some of these problems, or there are things that others can help you with and help is out there. So please talk to people. That's my parting message I suppose.

Helena:
That was fantastic. Brilliant, thank you so much. That's a very insightful overview about the ins and outs of MS and feelings and some good kind of practical things to think about. And just before we move on to our next speakers, just a note about questions. So if you have any questions for either Roshan or Cora or even to the MS trust, I can see that people have already been popping things in the chats, and will towards the end, we'll take some of these questions and we will ask them to put them to our guests. And as Roshan mentioned, we're not going to be able to answer any questions about sort of medication questions or anything like that in the stream. So if you have those type of questions, we could suggest you reaching out to your GP or MS team or even contact the enquiry line. And you mentioned Roshan about talking about sort of how your feelings can impact other people or sharing and I feel like you know this is one thing that we really wanted to have make happen with  these films that we've been putting out on social media with the hashtag of MS makes me so just before we chat to Cora we'll just watch another film from our campaign of hashtag MS. Makes 

Speaker 1 (from film):  
MS makes me feel grateful. 

Speaker 2 (from film):
MS. makes me anxious

Speaker 3 (from film):
MS. makes me scared

Speaker 4 (from film):  
MS. Makes me disorientated 

Speaker 5 (from film):

MS makes me feel grateful 

Speaker 6 (from film):

MS makes me feel anxious 

Speaker 7 (from film):

MS. makes me tired

Speaker 8 (from film):  

MS makes me feel judged. 

Speaker 9 (from film):

MS makes me frustrated 

Speaker 10 (from film):

MS. makes me thankful 

Speaker 11 (from film):

MS. makes me grateful.

Speaker 12 (from film):
My MS. makes me feel annoyed

Speaker 13 (from film):
MS makes me feel overwhelmed. 

Speaker 14 (from film):
MS. makes me determined.

Speaker 15 (from film):
MS makes me feel clueless. 

Speaker 16 (from film):
MS. Makes me feel challenged.

Helena:
Lots of great videos there. If you want to get involved with this campaign, do make your own videos and put them up on social media and you know, tag us or any of the other charity partners and do the hashtag of MS makes me. right. Next up Dr. Cora Sargeant, educational psychologist and person living with MS. And Cora runs a very interesting podcast about MS. I don't know if I'm actually be able to properly say what it's called because this sciencing the beep out of MS. Where she picks up specific science of psychology and tries to apply that to living with MS. I think I've described that. Okay. And it's a really interesting approach. I think I've been listening to it in preparation for today. And I find it really, really interesting. And Cora also recently shared a personal story on our website. So we're very excited to have you here. Cora, welcome.

Cora:
My great pleasure. Thanks so much for inviting me.

Helena:
So before we start talking about emotions and feelings, could you just give us like a little short story about yourself and your MS diagnosis?

Cora:
Yeah, for sure. Hello everyone, I'm Cora, and I'm an educational psychologist by trade but I work at the University of Southampton as a senior Teaching Fellow on the doctorate in educational psychology site, teach other people how to become educational psychologists is a great honour that absolutely amazing anything that I do that's good in my in my career is almost entirely due to some outstanding trainees I get to work with and colleagues. But I was diagnosed like four years ago ish and it was a strange little journey. I was working halftime as an EP out in schools supporting children, young people with special educational needs and disabilities to be included in school. That's sort of what we do. And I was working halftime at the University of Southampton, and neither halftime job were really halftime jobs, as I'm sure anybody with a part time job can attest to. And I was working hard and doing all kinds of stuff. And loving it. I thought it was, I was having a great time. And then one day, I realised that I was numb in one leg. And it was a bit weird, sort of spread up my leg. And I was like, this is an unusual experience. And when I told my neurologist this, he wrote back to my GP, and he wrote back to me this story. And he said, Cora discovered that she had gone numb in one leg in the shower. She had not shaved her legs in some time. And it was when shaving her legs that she discovered…and I was like, that's absolutely true. Totally true, and totally unnecessary. Wonderful. He's right, its exactly how I discovered it. And it went away after like, six, seven weeks. And then I lost a sense of taste, which was very strange.. sort of came on fairly suddenly. And then it went away after seven weeks or so. And I was like, this is weird. I went to go see my GP and he was like, I think you're just anxious. And he was absolutely right. I am an anxious person, particularly about health concerns. But still, I went to go and get a second opinion from another GP at this practice. Everyone was characteristically kind and generous. But the second GP was like, Okay, we're gonna send you to a neurologist just in case. And the neurologist gave me an MRI just in case. And then I got a letter from the MRI team that just basically said, a single lesion on the left lateral ventricle, likely inflammatory in origin. And I was like, damn, I knew enough to know, this was trouble. And then I went in and gave me another MRI of my spine, and I've got a few spinal lesions. And that was it..got diagnosed and nothing has ever been the same since I would say, it has been a bit of a journey. And I think it's, you know, for me, has been a mental health journey as much as a physical one. You know, I've had a bunch of weird symptoms as part of MS. I have relapsing remitting MS, and my remissions remain pretty strong for the time being. But the uncertainty of the disease presents a context in which mental health is hard to maintain, I think, your life is a challenging context in which to maintain mental health. But you MS creates a really unusual context. So I, you know, I didn't know how to manage it, I really didn't. And so I, the only thing I know how to do in this world, I'm not very good at many things. One thing I'm good at, is understanding the scientific literature of psychology, like asking scientific questions, and getting answers is what I do. So I asked the question, how do you thrive with MS. And there is a whole world of research out there…Roshan…what a beautiful opportunity to meet somebody who's engaged in the research that I rely on to understand how to thrive with this condition. And it turns out, there's lots of things lots of seeds that I can plant in the garden of my mental health and, and that's what I've been trying to do. And actually, since I started doing that, the world has opened up a bit to me, you know, cherishing and relishing in the relationships that I love, that are important to me in a way that I didn't before, you know, cherishing the things that I find important, and enjoying the challenges and overcoming the challenges that this disease presents, as it sort of, you know, tries to put a barrier between me and the things that I want to do in life, and keeping my eyes on the horizon, heading towards the things that are important to me. Yeah, I think I I'd give it up in in a second. Don't get me wrong. MS. sucks. Like, I'd give it all back if I could. But given that I can't, you know, I'll do what I can to thrive in its context.

Helena:
You mentioned sort of how you've tried to apply that.. because I love the fact that you sort of you look at the science and then we see it right. Let's see how we can apply that to life. So what are some of your strategies for managing MS symptoms?

Cora:
I think, I think the biggest thing that I've learned so far, this is really interesting. Interview One called implementation intention interventions, which are a podcast is kryptonite. I spent an entire 30 minutes on my podcast, like just stumbling over that phrase. But essentially, it just means that we think about what it is that you want to achieve, what is it you're aiming to do in this moment, like right now, whether it be like, you know, spending time with your partner, whether it be wanting to walk to the beach, whether it be you trying to record a podcast, and then perceiving the barriers that the MS presents as challenges and planning how to overcome them. So I, for a while, for a long time, about a year, I was experiencing chronic pain with the disease, I have nerve pain. So anybody out there experiencing their pain, I feel your pain, it is a huge challenge to overcome. And I was waking up at night in pain, and then not being able to get back to sleep. And I was like, I don't know, I just panic, you know, how do you manage that. And so I started to treat it as an experiment, right, would consistently wake me up about the same kind of time every night. And so I started to kind of experiment with the things that may help or might make it worse, and learn from that, and build a plan for how I would manage. So for all the symptoms I experience, now I have a plan, my pain management plan was like, you know, if I stay in bed, I'm too warm, the pain doesn't go away, it makes it worse. So I learned to get up immediately, I'd sit on the couch here, I learned to kind of keep my body temperature as reasonable as I could, I learned to sit upright with my posture upright I learned to watch Netflix, all of the wild, you know, those the darker side of Netflix and stuff that you don't tell your friends you've been watching on Netflix, you know, you watch it three in the morning. And then like, I'd I put my timer on my phone. So I could look at it and know that's how long I had to sit in pain. Because with all of those things, I could bring the time that I was in the most severe pain down. And then I could time it and be like, I've got 27 minutes roughly to be in pain. And if I just start the timer, and whenever I'm starting to panic, I look to the timer and I know, it's just 15 more minutes and it will get a little better, maybe it won't go away. Maybe it'll come back. But this round, it will go at that time. So that's how I manage every challenge that the MS presents, I build a plan. When I experience it, these are the things that I will do. And that has helped me a great deal because it just helps to know that I can do something right now. Whatever is getting in the way, this is what I'm gonna do. Pain Management plan, walking management, fatigue management plan, I got plans for everything I'm telling you. 

Helena:
I would love to read your plan. So I think that would be very interesting to see. We often say to people to do like a symptom diary. But this is almost taking it one step beyond that, because it's not just having the diary, but actually doing a little bit of research almost on yourself there to see how, how you deal with different situations and how it goes.

Cora:
I really like treating it as a challenge because it feels like a threat so often. And when I perceive it as a threat, my instinct is to run away and to avoid it, and to be afraid of it. And when I see it as a challenge, there's a bit of me that just feels a little determined, you know, like experimenting with the different things, maybe this different thing today, it's going to make it worse, but then I know something I didn't know yesterday, and then I can use it tomorrow to build the plan. And each day it gets you know, gets more elaborate. It's, you know, we solve one problem, we solve the next problem we solve the next and if we solve enough problems, you know, we get to get to thrive. That's my motivation.

Helena:
I like that. And so you spoke about the different management plans and things what sort of approaches do you take if you're struggling with the sort of the low mood and anxiety and depression, the things that Roshan was talking about that so common within them?

Cora:
I recognise Roshan’s description a lot. Anxiety is my bedfellow, for sure. And particularly with the MS. It just, there's so much to be afraid of. There's so much to be concerned about what might happen. And so much uncertainty about it. You know, it's very difficult not to feel threatened by that. And I experienced a lot of anxiety over the summer and I did reach out to the MS trusts and found it enormously valuable. Thanks so much. And I reached out to my GP and people and I reached out to friends. And you know, I know my mum's in the audience, I can see her out there. And I you know, in my worst moment, you know, I turned up on her doorstep in floods of tears. And she just gave me the biggest hug, the best support out there. And my other half, my wife Kaz, in my darkest moments, you know, is my rock, we went to the beach last week, and I can only walk for about 12/13 minutes. And it turns out the beach was 15 minutes away. So she, she proper Samwise Gamgee me and was like, I can't carry it for you. But I can carry you…basically like, dragged me to the beach, the last couple of minutes, absolute legends. So social support has been a huge thing. The other end of that, I think, is I think Roshan mentioned it, the sort of temptation to avoid, like, I always thought of avoidance as something that was something instinctive and natural to evade the things that were scary in our lives. And I never thought of it as something that was a real problem until I started doing this research and reading. And I realised that experiential avoidance really, genuinely is a challenge that we need to overcome. It's a there's a great TEDx talk, I can't remember the guy who talks but he's somebody who works with people with anxiety and experiences it himself. And he describes it as a, you know, as the anxiety like your ship’s crew. And the more that you ignore what they're calling for, the more that you ignore their concerns, the louder they have to shout. And when they're shouting, you as Captain can't be heard. You can't reassure them because they're shouting too loudly. And so his point becomes that actually, we need to hear their anxieties. You need to listen to the crew of your ship, so that you can, you can then be heard because they will quiet and the more you hear them, there's a great quote from Life of Pi. I'm a huge like, I'm becoming an avid reader these days. And life of Pi has this beautiful quote, which I have here, if you would mind me sharing it,  And I'll say a word about fear, says Yann Martel. It is life's only true opponent. Only fear can defeat life. It is a clever, treacherous adversary how well I know it has no decency respects no law or convention shows no mercy. It goes to your weakest spot, which it finds with unnerving ease. It begins in your mind, always. So you must fight hard to express it, you must fight hard to shine the light of words upon it. Because if you don't, if your fear becomes a wordless darkness that you avoid, perhaps even managed to forget, you open yourself to further attacks of fear, because you never truly fought the opponent who defeated you. Beautiful, beautiful. And I always thought this is like a literary idea. And I didn't take much stock in it, because I'm a big scientist. But then I came across experiential avoidance and realise, actually, there's good evidence to suggest that what we need to do is accept the situation as is without judgement. In my anxiety management plan starts with radically accept and non judgmentally notice what's going on internally. And be curious about what the anxiety is trying to communicate. And the more I accept that, the more I listen to that part of myself, the quieter it becomes, and then the more I can be heard, as I reassure myself, that I'm safe, that I am loved, that I'm me, its going to be alright.

Helena:
That's really, really good. And do you have any particular stories from when you use psychology to help manage MSO or other situations in life?

Cora:
Yeah, I mean, yes, I mean, I think the podcast has got to be like the story. I mean, I've used I think most of the time, what I have done has been to try to find the funny in what I'm experiencing. That's the kind of thing that I've done most frequently. And I, I find it hard, like so I'm Hi everyone. I'm transgender.  And I've talked about being trans in all kinds of places. And I, I have found the funny in being trans much more easily, lots of wild experiences. But having MS is harder to find funny, but it is possible.

Helena:
That's brilliant. I'm just aware of the time and I thought we might have to see if we can get some questions from people like yourself. Would it be okay to answer some uestions? Otherwise, we could just sit here and chat all day. I think it's been very, very, very, very interesting. So, I think there's been a few questions that has popped up already. And we've got one here from Dot.. does MS impact your personality? I'm less empathetic, I now interrupt people more, and I offload to new people.

Roshan:
Shall I make an attempt, I'm not entirely sure about it affecting your personality, per se, it really depends on how you define personality. For me, personality is something that is a very stable and ongoing way of responding to the outside world, and to the way in which you think about it. So to that extent, you know, I think, you know, in some respects, it's not just MS, but your life experiences that have an impact in terms of how you begin to think about the world around you and how you respond to it. So if you find that you are getting a lot more, I can't remember the phrase you use, but it was, you know, if you're getting more agitated about something, if you're finding that you're offloading a little more, perhaps it does have an impact in the way in which you are responding to the world, perhaps also, because the world has been responding in a way that's been rewarding to you. So you know, you found that there's something that's positively reinforcing or something rewarding for yourself, that would mean that there's a greater chance you're likely to do it again, in the future. So to that extent, I think it does have an impact.

Helena:
I think it's an interesting one, because I know certainly so we're getting older myself, I can feel like I care less about my surroundings. And I can sometimes sort of say things that I probably wouldn't have said when I was a bit younger, because I know I just feel like.. so I don't know, but a little bit with offloading, doing this podcast, sometimes when I chatting to people, I'd share more than I set out to do in the first place, because I'm just here to interview but then suddenly, I'm talking about on my own symptoms

Roshan:
The best type of interview that I think, you know, there may be some aspects of the personality that are a bit more amenable or which are more likely to change than others. Just before the livestream started Cora and I were having a chat, and we were talking about, for example, optimism, if you're a kind of like, half glass, empty kind of person, it's not very easy to kind of flip that around and change that. So there may be some aspects of your personality that are a bit more resistant to change than other aspects.

Helena:
Cora have you changed notice any sort of changes in personality yourself? Since being diagnosed?

Cora:
I don't. I don't know. You know, I mean, I think the things that I find important have changed. I think it probably is possible that it does happen to people, I'm sure. And I'm sure that, you know, when I'm most anxious, I'm definitely a very different person. Like I'm shorter with people and I'm, and I need more reassurance and I, I'm sure that I like, I get a bit needy and clingy. I think that's probably what I do. But, you know, I think returning to the things that I find important are the things that can keep me like me, right? Because when I turn to the relationships and realise that those are the important things to me, and focus on those rather than focus on the things that the MS are causing problems with, then the MS just becomes a barrier to overcome to get back to those things. There are moments now where I'm sat on the couch with  and we're watching Succession -  Succession is amazing, by the way, you know what it is? And it's just, I just like take a beat to appreciate those moments because they just gorgeous and fleeting

Helena:
We’re getting lots of questions about your podcast, we're gonna pop the links up and we'll include them in the in the email when goes out with when we're sending this the links to the podcast out later because people do need to listen it's a very, very, very good one. And I've got a question for Roshan and I'm leaning over here a little bit. If you are seeking psychological support, what is the best method: ask for referral to your GP or existing MST?

Roshan:
Really good question. Um, the answer to that is really depends on where you're based. Because if you're based in the UK, the NHS is quite varied in terms of the kinds of psychological support it can provide you, particularly in relation to MS. So I know that in some places in some MS clinics within the NHS, you do have an in- house psychologist or neuropsychologist, but in some other places you don't have that facility. So my suggestion would be in the first instance, speak to your treating MS team, they may have information about what's available in house. So for example, if there is an in house psychologist or a counsellor or neuro psychologist, or a therapist, that might be a good starting point, there. The other option is to contact your GP, I know that some GP practices do have some psychology input. The third option is really to look around. I know that in England, for example, there are the improved access to psychological therapy service, which also allows self referrals. So there are different ways in which you could go about doing this. My feeling is, if you start with the MS team, treating MS team, they usually have a sense of what's available locally. So you don't have to go very far to access some of these services. So it really depends on where you're based. But starting with the MS Team is good bet.

Helena:
That's good. And I think, you know, it's this has really changed over the years, isn't it? Because it’s getting so… I remember back when I was diagnosed in I think it was 2007. I think I did inquire sort of about this very much just looking at the physical symptoms, but when I sort of said, actually quite like to talk to someone about this diagnosis, because it's really overwhelming me, and they were sort of just looking at well, you have to pay for that, you know, private kind of, but it seems from what I've heard now that it's getting easier to get sort of that access without having to pay for it. 

Roshan:
That is true. But, you know, given the pressures we have on various NHS services, there may be a waiting list in some areas longer than in other areas. But what's really interesting is over the years, there have been self management programmes that are beginning to demonstrate considerable levels of evidence of effectiveness. So what typically happens in some services is that while you're on a waiting list to see somebody to provide the actual therapy, they might start you off on a computerised programme for CBT, for instance. Now, as I said, you know, these are things that can help some people, it's not for everybody, some people will say, No, I don't want to have to do this myself, I really want to talk to another human being. That's fine. But you know, for other people, that might be something that they would find useful. So as I said, you know, different types of therapies for different types of people. So, while there are waiting lists in some areas more so than others, there are things that you can do yourself. And again, another good place to start with would be with your GP, because some GP surgeries, I know, subscribe to some of these programmes. The difficulty is that there are so many programmes out there. Now, you know, the internet is awash with different things. And not everything has been tested very rigorously, which is why it's a good idea to check with your GP, whether there's something that they would recommend. So that's a good starting point.

Helena:
I think Nick has said he wants to show a message from the chat for Cora: I love your fun take on various situations. Cora will be sure to take on that on board. Thank you. 

Cora:  
We're in this together, jump on in here.

Helena:
I think. Yeah, I think it's very interesting to sort of listen to the different approaches I saw. There has been some questions about how to get started with mindfulness. I've seen both of you given some stuff on mindfulness. And we did a stream on Monday with which was about mindfulness. And we did a guy there just he did a mindfulness session. It's very much a buzzword at the moment, but how do you actually get started and how can you apply it to life with MS.

Cora:
There's a couple of ways that I've done it. There's some great resources online around mindfulness. There's also some wonderful stuff interventions that are fairly low cost actually run by charitable organisations, particularly in the UK, and a quick search and you might find some in your local area. And I've been on one very recently, I went on mindfulness based stress reduction for MS course, where all of the participants had multiple sclerosis. And it was four weeks, they knew the charity that I went with was an eight week one as well. And I'm sure there are others around the country. But wow, it was great. It was good. Because apart from anything else, like mindfulness is wonderful. This is one of the best evidence interventions that I've ever come across, frankly, and, but getting the opportunity to meet and be with other people who knew what I was talking about. And where, you know, somebody would say, like, I'm having bladder issues listening, and everyone else in the room is like, for sure, yeah. And my bladder’s like a small puppy, if I get overexcited, or if I get anxious, and I'm gonna pee on the floor. Like, it's just, it's just the way that it is. And, and there's something beautiful about when people are in the room together, working towards a common aim, and all really genuinely understanding each other. That's kind of cool.

Helena
That's a good idea to such as trying… because sometimes I think people get maybe a little bit scared about trying it themselves, because they don't know where to start. So doing something like that when you're actually together with other people exploring it sounds like a good, good approach.

Cora:
Yeah, it's a nice, there's some introductory sessions too. So you don't have to go on a full course you can just go on one of these drop in sessions, perhaps. I found it very helpful personally, I do it. Last thing at night before bed, game changer. Absolutely wonderful. Getting me ready for sleep.

Helena:
This has been absolutely fantastic. I'm just aware of the time we've been really going over time it basically and like I said, we could probably sit here and chat all day. But I just wanted to say if there were any sort of parting words of advice on sort of final feelings about emotions and feelings for people with MS. Before we are nearly at the end here, Cora.

Helena:
I think my main recommendation is to read The Martian by Andy Weir. And anything by Andy Weir, I was listening, I was reading I was reading most recently project Hail Mary is most recent book.. absolutely outstanding. But the Martian is a beautiful analogy for MS. It's about a guy who's stuck on Mars, trying to grow a garden, when, you know, his habitation unit, everything around him risks breaking down. And he's you know, he's in real trouble. And there's a great quote from this book. He says, at some point, everything's gonna go south on you, everything. And you're gonna say, This is it, this is how it ends. And he says, you can either accept that, or you get to work. He says, you get to work, that's all it is. You just begin, you do the math, you solve one problem, you solve the next one and the next. And if you sold them enough, enough problems, you get to keep going. And there's something beautiful about like the focus on the problem at hand, you just focus on that one problem, and then focus on the next.. we keep working on it. And, you know, treat each problem as it comes and move on to the next one. I think that's stunning. I really love that. And I love the book. It's so good. So yeah, that's, that's what I would encourage people to do. Just focus on the problem that's in front of you. Try not to see the ones down the line.

Helena:
That's a book for reading clubs, then I think I'm gonna add that to my to my reading list. That's a hard act to follow Roshan..have you?

Roshan:
Well, definitely a hard act to follow. And I'm certainly not going to share any recommendations of books that are.. particularly the ones I'm reading because it's probably likely to make you more depressed or worried than anything else. But I suppose my parting words would be you know that. Please don't suffer in silence. Mental health problems, particularly mood problems can and are invisible symptoms in a way and people may not always pick up the fact that you are struggling. This includes people who are healthcare professionals. And because it's an invisible symptom, it's really important for you to raise this with your treating team. raise this with people you trust and people important for you in your life, because they may not be fully aware of what you're going through, and they may be able to help you so don't struggle in silence. Please speak up. There is help at hand

Helena:
Fantastic see that it was a hard act to follow. But I think that was a brilliant end to this. I want to say huge big thank you to both of you. It's been so interesting. And I feel like I've learned a lot as well. And things I'm going to try to apply to my life. And, and we will share links and things as well so people can get in touch and definitely go and listen to Cora’s podcasts because it's brilliant. Thank you so much, guys.

Cora and Roshan:
Thanks very much.

Helena:
And as I mentioned earlier, the MS Trust has a wealth of information on all things MS related including well being and mental health. So don't worry, if you didn't have time to note anything down, we'll share all these things. You'll also be able to watch this again on our YouTube channel after MS Awareness Week. If you also signed up for the event by email, you'll get an email reminder when they're available. But yeah, if you subscribe to MS trust YouTube channel, then you won't miss it. Because then you'll get a notification. I just wanted to say hello to everybody in the chat as well. I've sort of been ignoring you guys. Nick has been looking at you and chatting to you. You've been brilliant. I've seen some messages popping up. And there's a lot of love for our guests, which is really, really nice. I feel I think both of them have been absolutely brilliant. And I just wanted to sort of end by saying that if we didn't get around to answering your questions, do feel free to contact the MS trust inquiry service, and it's available from Monday to Friday except UK bank holidays, we've got a few of them coming up in May, from 9am to 5pm. And outside these hours, you can leave us a message and we'll get back to you as soon as possible. The number is 0800 0323839 or you can email us at MS trust.org.uk. And once again, I want to say a big thank you to all to our speakers and everyone who's attended and I hope that you found today's session useful. Thank you so much, everyone. Bye.

*Figures correct at the time of publication. New prevalence figures have since been published.

Breaking it down live - MS: your emotions and feelings