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- [00:06]
A
Hello and welcome to Breaking it down, our podcast from the Ms. Trust. I'm Nick and I'm joined by our podcast host, Helena. Hi, Helena, how's it going?
- [00:15]
B
Hi, Nick. It's all good. We're very excited to have a little chat about Ms. Awareness Week, which I think I'm gonna just hand over to you because you, You've been leading our, our work on the, on the Ms. Awareness Week from the Ms. Trust, you're the expert subject. What are we doing this week?
- [00:34]
A
That's right, Helena. Yes. So it is Ms. Awareness Week as this podcast is coming out. So that's between the 28th of April and the 4th of May, and we've been working again with our charity partners on a one unified campaign about Ms. Conversations. So our charity partners this year have been The Ms. Society, Ms. Together, MSDK Neurotherapy Network, Overcoming Ms. Shift, Ms. And TalksWithMS. And as I say, the theme is Ms. Conversations. And this is because we know people who live with Ms. Have to go through some really, really tricky conversations with, you know, that could be with family, with friends, with people we work with, even with health professionals as well as. Well, an example of this might be, you know, disclosing your diagnosis to your employer, for example. And we're here to say you're not alone and it's good to talk. So the idea of the week is to get people talking both within the Ms. Community and to the wider community as well, so that people are more empowered to go away and have those conversations, whether they're good, tricky or supportive. We also are going to shine a light on some of the resources that we have to help people have some of those difficult or sensitive conversations, because we know it can feel daunting. You know, you might think, well, should I tell this person? Will the other person understand what I'm talking about? And those feelings are completely normal. So we aim to have a range of resources that will make you feel empowered and that you have all of the information available that when you do go into those conversations, you can say, right, I know that I'm going to mention these things and I'm going to present the information in this way. And really their idea is to get everyone talking. So if you do want to get involved in the campaign, you can search on social media. So the hashtag this year is msconversations. And we will link to everything in the show notes as well.
- [02:44]
B
And obviously here at the Ms. Trust, we have got loads of resources on opening up conversations. You know, some of these topics that Nick Spoke about, like talking to your employer or, you know, preparing for appointments and, or talking to your friends and families, explaining to your kids about Emma's. So in order to sort of pick out what's our best content for, for, for opening up the conversation, I spoke to Claire from our information and engagement team and she's going to talk me through some of the resources that we have here at the Ms. Trust that might be able to help you with the opening up the conversations, just like Nick said.
- [03:29]
A
Absolutely. And we're also going to be joined by Amy from Ms. Together and. Well, Helena, you and Amy had a good chat, didn't you, about some of those trickier conversations that you've had?
- [03:42]
B
Yeah, yeah, it was really interesting. We caught up with Amy at the Ms. Trust conference and had a chat about. We chatted about talking.
- [03:51]
A
Yeah. So without any further ado, I think let's get into our interviews and hear from our guests.
- [03:57]
B
I am back once again with our almost like favorite guest on the podcast, I would say, Claire, who is our head of info and engagement at the Ms. Trust. Hi, Claire.
- [04:10]
C
Hi, Helena. It's always lovely to be here.
- [04:14]
B
So today we are going to just briefly talk through some of the resources that the Ms. Trust have to help people having these Ms. Conversations that we're focusing on during Ms. Awareness Week. So I guess starting off, should we talk about what, what do we have around telling people about your Ms. Diagnosis?
- [04:34]
C
That's a really important part of the journey, isn't it? You know, you've just been told that you've got ms, but how do you share that information with other people? How do you, how do you let people know that, how you're feeling about your diagnosis? How do you let them know what to expect when you might not even even know yet? You know, you might still be coming to terms with what Ms. Means for you, what you've been told by your neurologist, you don't, you might not know treatment decisions you've taken. So it's definitely something to consider and it's going to be something very personal as well. We have quite a few different resources for you to use either to think about who you want to tell. There's obviously, there's no, there's nothing that says you have to tell anybody at all, but it's much easier to get support from the people around you if they know what you're going through. I say when, I say no one, you do have to tell insurance and the DVNA when it comes to driving with Ms. But for everything else about your family, your friends, your workplace, all that kind of stuff. It's very much up to you. So you have got a certain amount of control there. So the kinds of things that we have to support that kind of conversation. We've got a lovely leaflet, an information sheet called telling people about your ms, which sets out all the things you might want to think about there. And of course, disclosure of Ms. Is going to be one of those things that you come back to again and again. You might just say, just tell people the information that you're ready to share and they're ready to hear. And it might be helpful to be quite open about when you don't know and what you don't know. I've been told it's Ms. This. It's great to have an answer for what I've been feeling or an explanation for my symptoms. It'll be a few weeks or months before I know what that means for me. Long term. Yes.
- [06:30]
B
So we mentioned family and friends a little bit, you know, and I think we do have quite a lot of focus on this. So how can you approach conversations with friends and families about your ms?
- [06:44]
C
I think a lot of people have told us that they like to know who their allies, they know who their allies are. The people, the very nearest and dearest, who they're going to be really hoping to, will offer them support. So that might be a partner. It might be a parent or child who you're responsible for as well. I mean that's another whole, whole issue. Families are pretty complicated and we all have very interreactive, interrelated responsibilities for each other. So I would say that making sure that you. Maybe it's about not over drama, over dramatizing it. You know, this is just something particularly maybe with children. Just give, give the facts. This is what I've got it this. I'm still working out how to live with it. I'll let you know if anything changes. Don't worry. You know, it's in hand. Might be a very reassuring message for a child that from a parent who's got an Ms. Diagnosis. But for a friend or partner it might be. I'm completely, you know, it might be about the emotional side. I'm completely overwhelmed by the information I've got here. I've been told it's Ms. I don't know what that means for me yet. Can I. Is it going to be okay to share this? Can I talk to you about this from time to time and maybe set the parameters? It's okay to ask if you think I'm feeling, you know, if you think I look, I look. Something looks like it's changed. If I'm behaving oddly or I look worried, you know, it's probably going to be this but do ask or if you say, I'd actually rather not talk about it, you know, it's about setting the ground rules, isn't it? And being open. Say people can't, people can't read your mind, whether you have Ms. Or not, you know, they can't read your mind. So if you don't tell them what's going on, they won't know and if they don't know, they won't be able to support you. We do also hear from people who get quite unsympathetic responses from people when they do say, particularly around symptoms that might be quite invisible to other people. Fatigue is the big one, of course, you know, and saying I'm, you know, I've got. It's a really bad day for my fatigue. Oh, everyone gets tired. Oh, yeah, I'm quite tired. I didn't sleep well or. Well, I did a big session at the gym, so I'm tired as well. And saying, it's just not the same. It's just not the same as Ms. Fatigue. So how do you communicate that and say, yeah, I understand that you've got, you're tired, but there's a reason for it and you will probably feel better after a rest. But with Ms. Fatigue, I, I can't really predict that. I can't really predict that I will feel better after rest and it might make it really difficult for me to do some things. A lot of people with Ms. Worry about letting family members down or friends down when the fatigue is difficult to deal with. And that is something that, it just really helps to be upfront about it. I'd love to say yes to this. This sounds lovely. Thank you so much for inviting me. Keep inviting me, but, but accept that sometimes I might not manage it or sometimes I might need to leave early or I might need to change the plans at the last minute. So I think those conversations like that could be really helpful. And that's what our online resources, you know, our webpage all about talking with friends and family can do. It kind of gives you that, you know, things to think about and some, some opportunities to, to bring up Ms. In the conversation.
- [10:02]
B
And everything that we're discussing here is obviously linked on our Ms. Awareness Week page. We got links to all these resources.
- [10:09]
C
Absol. Absolutely. I love this topic for Ms. Awareness Week. You know, we know that conversations, peer support, talking with other people, it's so important. We need more people to understand what Ms. Is and what Ms. Is like and how it feels to live with Ms. We need to know. We need more people to understand the diversity of experiences with Ms. And we need to be talking about Ms. In lots of different ways and lots of different places. And so that's what this Ms. Awareness Week campaign is all about.
- [10:38]
B
And you, I know, been involved in some work that we did about how you should go about talking about Ms. At work.
- [10:44]
C
And, yeah, it's taken a few years to develop, but some focus groups we did with people living with ours talked about this as being one of the most difficult moments. How do you tell the people at work that you have a mess? How do you explain what that means without giving away your whole medical history? You know, there's a lot of stuff that you want to keep private, but perhaps you want to give a bit of a sense of how MF might affect you in the future and what it means. So we've developed a booklet that guides you through disclosing an Ms. Diagnosis to your manager, to people at work, and it gives you a little template that you can fill in. It can be as simple as just ticking a box or two. These symptoms are things that affect me. Give it. Give some options for things that you. That your workplace might be able to do, put in place to support you, reasonable adjustments that can keep you independent and working well for as long as you can. It gives your employer some information about the Access to Work scheme and about the Equality act, which protects people with Ms. From discrimination at work. And so we're really pleased with it. And the response it's got from people with Ms. Has been very positive. They've seen it as a very easy way to just set down a little bit of the information to actually have something to hand over to a manager and say, I've got ms, this is what it means. And actually, here's some easy things that we can do to keep me working well.
- [12:17]
B
And, I mean, one thing that we do see a lot from people who want to have conversation or want to talk about it, is that they reach out to the Ms. Community. Could you talk us through a little bit? Because obviously we have a big Facebook.
- [12:30]
C
We have a fantastic Facebook community, don't we? And you've been absolutely phenomenal in the way you've managed that over the years, Elena. We know it's, you know, very much down to you, but we have thousands and thousands of People with ms, lots of them are active, lots of them just, you know, follow and listen and watch the conversation. But that peer to peer support, you know, having a conversation with somebody who knows what's going on, having somewhere where you can just drop in a question and somebody else is been there. Somebody's going, oh gosh, yes, I recognize that. I've been there. That's so valuable and it's so. It's so important to stop people with Ms. Feeling alone because it's more common than people think. Ms. Isn't so common that you'll know lots of people with Ms. Necessarily in one place. And so you might be the first person that in your, you know, in your kind of friendship group with Ms. So, you know, finding another group of people that, where you don't have to kind of unpack everything, they just get it.
- [13:30]
D
That's so valuable and having those sort of conversations.
- [13:35]
B
We're talking a bit about, you know, raising awareness and raising awareness on big scale. But actually if you raise awareness of your own Ms. On grassroots levels in this support group, you will help other people. Because even if you're just lurking, you'll read stuff, won't you?
- [13:50]
C
Well, you do, you hear? Yeah. And sharing is a wonderful thing to share your experience and so other people can learn from it too. And it might be as simple as well, I've tried this particular mobility aid and I found it really helpful or you know, just talking about the emotional transformation of that some kind of treatment or some health professional or an interaction that you had one day and think, actually this really changed my life. I really think you should, you know, other people might benefit from it, but it's also important to share the stuff that isn't positive as well and to share the stuff that's, that really made, that brought you down or made you sad or angry and somebody might else out might have a solution. Oh yeah, we face that too in our family. This is one way that we handled it. Have you considered this? Or that? And that could be lovely as well. And sometimes even if there aren't solutions, there's just company. And that's important too.
- [14:43]
D
That is very important.
- [14:45]
B
Thank you so much, Claire, for talking us through our resources and answering my questions and pleasure.
- [14:52]
C
There's so much out there and we've got loads of it on our website and I say the Ms. Awareness Week webpage has it all broken down for you.
- [14:59]
D
Fantastic.
- [15:00]
B
Thank you so much.
- [15:02]
C
Speak to you soon. Bye.
- [15:03]
E
During Ms. Awareness Week, we will be asking for your support towards our ongoing work. We receive no government or NHS funding, so we rely heavily on the support of people like you. If you or your family have received invaluable help from our helpline, the booklets, the website or this amazing podcast where there's relevant content, personal stories and the experts are plenty, please do consider giving back. 10 pounds could pay for publishing this podcast and getting out to thousands of people within the Ms. Community. Your gift really does make a difference. If you can, please give today. Thank you.
- [15:47]
D
Today we're going to be talking a little bit about conversations that we have had about Ms. Some conversations that we wanted to have and some conversations that we. You didn't want to have. My name is Helena, I am originally from Sweden. I was diagnosed with Ms. When I was 29. I am now 47 and I work for the Ms. Trust.
- [16:06]
F
Hi, I'm Amy. I am 27 years old, nearly 28. I was diagnosed with Ms. Just after my 21st birthday. I'm originally from Wolverhampton but now live in Manchester and I am also the founder and CEO of Ms. Together.
- [16:24]
D
So shall we start by talking about diagnosis? I guess that's one of those first conversations that you have about Ms. Did you know anything about Ms. Before you were diagnosed?
- [16:35]
F
No. And actually it was just from the kind of symptoms that I got. I then started to Google, as you do, and kind of Ms. Started to come up when I put my symptoms in and, yeah, just started reading about what it was, but had no idea. Didn't know anyone else that had it. And actually one of the most memorable conversations I had when I was diagnosed was with a doctor. So I went to see him, said about my symptoms and I kind of said, do you think it could be ms? And he said, no, definitely not, you're far too young to have Ms. So that was a very, very interesting conversation because I then obviously went on to get diagnosed.
- [17:20]
D
Yeah, you almost feel like you want to call them up and go, hey.
- [17:23]
F
Yeah, by the way.
- [17:25]
D
Yeah, that's it. Yeah, I was. My grandfather had Ms.
- [17:30]
F
Okay.
- [17:30]
D
So I knew about MS, we'd spoken quite a lot about MS, but he was diagnosed, like, in the 1970s, so, you know, things were quite different. And he'd passed away long before I had Ms. But one of the most difficult conversations that I had when I was diagnosed was telling my mom, because obviously she'd seen my grandfather have it, but she also had a close friend whose mother had actually passed away from complications of ms, so I think she had really negative sort of experiences of it. And I knew that before because when I was in the process of being diagnosed and Ms. Had come up as one of the possible causes to my strange symptoms. And she was like, no, no, you don't have that, because it's nothing like what I've seen with these other people. So I was almost finding that harder to talk to my mom about it than when the doctor gave me the news, what it was.
- [18:24]
F
That's so interesting. Yeah, for me, my mum was with me when I got the diagnosis, but it definitely hit her very hard. But some difficult conversations I then had to have was telling my friends and my boyfriend at the time and kind of calling them up and being like, by the way, those symptoms that I was having, turns out it's Ms. And then kind of them not knowing what to say, like, how to react. They obviously didn't know what Ms. Was either. So kind of had to explain as much as I kind of understood at that point. And, yeah, it was just really hard, like, to actually say, I've got Ms. Like, I've got this thing that I'm gonna have to live with. And, I mean, everyone was great about it, but it was still very difficult to have those conversations.
- [19:11]
D
And when it's really fresh and new and you don't really know that much about it and they start asking all these questions. Well, I don't know.
- [19:17]
F
I don't know. No, I did.
- [19:20]
D
I very much had that because I think it was almost the same day as I had my diagnosis. I'd gone into to the hospital to sort of get. Get the news from the neurologist. And then I was working not far away from the hospital, so I came, come into my office and I thought. I wasn't really sure. Do I say something? Do I not say something? Yeah. But then, because. And this is, you know, coming. I was 29 at the time. I had been going to a lot of hospital appointments. There's always a lot of, like, gossips and rumors and things going on in the office. And I just thought, they're going to think I'm pregnant. This is why, you know, you. Somebody in that age goes. So I thought, okay, I'll just like come out. And so I went and spoke to my manager and he said, well, why don't you just tell HR what's going on? So I did, and I just assumed that they would, you know, maybe get in touch a bit later. Sent me an email saying, can you come up? And then they sort of just sat me down and they said, what do you need? And I was like, I don't know what Do I need. Could I. And it was. I mean I know that, that that's a very privileged situation to be because you many like horror stories. I mean you must hear that from running Ms. Together that where people have really bad experiences at work. So I know it was a privileged thing, but it was just baffled me because I just didn't know. I was just thinking maybe I could, I don't know, take a little time and go home and process this. But yeah, it was, it was, yeah. So they were very supportive. So that was nice. But it took me a little while before I then could go home and sort of actually have the conversation with my mom. So yeah, pretty much the first person I told was my boss.
- [20:57]
F
Yeah. Wow. For me, I was diagnosed while I was at university so I hadn't had, you know, a proper full time job before then and I had told my lecturer at the time, like my, what they called like your main person that you go to in university. And yeah, so I went to my lecturer and kind of said this has happened, like do you know what I should do? And they actually were really helpful. They pointed me in the direction of the kind of disability support at the university. So that was really good. But then when I left university I, I guess, yeah, so I was applying for my first job, proper job outside of uni and I remember going to an interview and I disclosed that I had Ms. And they said, well, does it really affect you? Like how much does it affect you? And then I was like, I don't really know, like it varies day to day. I ended up getting the job but I did feel like I definitely downplayed like how it affected me. I was kind of like, oh yeah, like it doesn't really affect me that much. Rather than, you know, being a bit more honest and saying actually it could really affect me some days, like I might need to have a rest, I might need to have some days off, I might need to go and have treatment or whatever it might be. So yeah, and they weren't very supportive really. They kind of didn't talk to me about reasonable adjustments or anything else. So yeah, an interesting experience. But I also didn't know I. I hadn't really, you know, been given any advice of what support could be out there for me and I hadn't really done that research myself so. Definitely more aware now. Yeah, sure, yeah, Wasn't back then.
- [22:56]
D
I think after I've sort of talked to my boss and they took me a little while then I decided I was going to tell my colleagues as well, sort of what was going on? And I think we were a team of about five or six people and it was interesting. I don't know what your experience of like, but when you tell people how they process it and some people will like come and talk to you straight away, like, are you okay? Are you okay? What's going on? Other people are so awkward. They don't feel like, oh, what she tell me that. I don't really. I mean we were, we were all quite close colleagues so it wasn't like complete strangers. But. But yeah, it was, it was really. And, and I felt bad then because I was like, oh, I'm putting these people in an awkward position now and expect an answer. And I really wasn't really expecting them to come and say or do something. But it was interesting to sort of see and it wasn't necessarily the people that I thought was going to be really concerned that came to me. So. But it was, yeah, it was lovely to, to sort of the people who really did care. But then there were other people who almost like wanted to fix you. It was like, oh, have you tried this diet? Or can you do this like straight on? Yeah. Which I know comes from a nice place, but it's a little bit like I don't even know what's going on. I haven't processed this.
- [24:04]
F
Yeah. Something that really helped me was writing my blog. So shortly after I got diagnosed, I decided to start sharing my experience and oversharing about, you know, what I was kind of going through. But it actually really helped with those conversations that I was then having with friends and family and even strangers because everything was just kind of on the Internet. So my friends and family were finding out about how I was feeling about certain things by reading my blog. So it actually meant that it. I didn't have to have those in person conversations. So for me that was actually quite helpful and kind of took that pressure away. And I think it was also quite interesting when I started dating for the first time after getting diagnosed with Ms. And I didn't obviously have it on my dating profile, but I did have links to my social media platforms. And I've always like, since getting diagnosed, I've always been quite open about the fact I have Ms. So like I said, I've had, I've got my blog and done like various fundraisers that I then post about and explain why I'm doing them. So it's very obvious that I have ms, I think when you go on my social media. So yeah, for me it was again Quite a good way of seeing whether people were still interested after finding out that I had ms, because I knew that if they kind of went to the effort of speaking to me, they would have looked at my profile, looked at my social media, seen that I had ms, and then I, I still had conversations and kind of said like, oh, yeah, like I've got this and this is what it means, this is how it affects me. But I didn't have to kind of disclose it as much. So again, that definitely helped. I just kind of put it all out there and then let people find. Find it themselves.
- [26:04]
D
I like that I, I didn't have a blog recently. I've been sort of for a few years been doing an Instagram account just about things. Talk about my, my running and things like that. But it's, it's a lot of Ms. On there as well. And I quite. Sometimes I, I find it really nice to be able to just kind of pull myself out on there. Don't really think about the people are looking at it. And then sometimes I have those moments where I think, did I overshare? Do they really want to know these things? But yeah. Do you ever feel like that?
- [26:32]
F
Oh, yeah, yeah, I, I definitely, when I'm not as active now on my blog, but I've got, you know, social media pages where I post relatively regularly when I can. But yeah, I definitely used to overshare far too much. Maybe not so much anymore. But yeah, it's. I think it's good. You know, I've had people message and say how it's helped them, so that's, that's why I do it. But yeah, definitely, yeah, I think, because.
- [27:00]
D
I think, you know, I was diagnosed in, I was gonna say Stone Age, but, you know, I don't think Facebook was just about around. But I used to use forums and I think I joined a forum where I found, I think it was actually a Swedish forum, although I was living in London at the time and I found some Swedes that were living in London that had Ms. The Internet is fantastic, isn't it? And it was. Yeah. And this person, she more or less became my mentor about all these things. So we had a lot of good conversations because I think I'd use that forum a little bit when they were sort of talking that it might be Ms. So then, but then you do these things that you just come on and you sort of say, I have these symptoms. Could it be ms? And everyone was like, yeah, it could be, but it could also be other things. And so you're already having the sort of conversations with strangers, I suppose. But it was really nice then to meet up with this person and I'm still in touch with her and she is really, really nice. And I think the first time I had the Ms. Hug, I sort of knew because I've had those conversations with people what it, what it could, what that weird symptom was, because it's really hard when you see the description. You think like, what, what? Pushing pain, what is going on? But then when I had it, it was like, oh, oh, this is what it is straight away. So I think it's in that way that. To sort of keep yourself informed about the ms, even if there's symptoms that you're never gonna have. Yeah, it really helps. So I feel like that kind of having conversations with other people with Ms. Is really, really, really useful.
- [28:32]
F
Yeah. 100. It's the main thing that helped me, I think, when I was diagnosed, just finding people I could relate to, finding people that were kind of a similar age, going through similar things and, yeah, just being able to speak to them about what was going on and how they were dealing with it. Yeah, that helped massively, because again, you don't fully get. Get it till you get it. Yeah, no, you don't get it. So, yeah, massively helpful.
- [28:59]
D
Yeah. Have you felt like sometimes, Mississippi forces you to have conversations that you're not quite ready to have, like with health professionals where they, you know, if he's going to start medication, they'll be starting to ask you things like, you know, are you planning to have a family? Yes. And because you were diagnosed really young.
- [29:18]
F
I mean, it was literally one of the first things they asked me. And I just turned 21. Like, obviously I was not thinking about that. Yeah, you know, some people, that's. That's what they want to do. For me, it was the furthest thing from my mind. And what really annoyed me was I didn't get asked if I wanted, like, was planning to go traveling or anything like that. And it was only a few years ago when I realized that I hadn't had the vaccines that I needed before I started a treatment which meant that I couldn't go to certain countries. So when I came to plan this traveling trip that I was really looking forward to, I then realized I couldn't go to half the places that I actually wanted to go to because I hadn't been asked, do you want to go traveling? I'd just been asked, do you want to have a baby? And like, as someone in their 20s, why are we only getting asked if we want to have a baby? Why is, why are we not getting asked? You know, do you want to go traveling? You know, are there any other things that you need to plan your treatment around? Like. So yeah, I found that very frustrating. Still managed to go traveling, but just obviously had to plan it a bit differently. So. Yeah, but definitely the conversation around having children. Me and my partner are not, still not planning on having children at the moment. It's a conversation that we keep having though, even though we're not planning it at the moment. It is something that we are kind of thinking about because you do have to plan ahead. So it's like, you know, if in a few years time we do what other steps we need to take, like what do I need to think about treatment wise? And it is quite frustrating that you have to have those conversations and you can't kind of just let it happen naturally. You have to consider everything. And yeah, that's, that's hard.
- [31:17]
D
Yeah, it sort of pushes things. Yeah, I think I was in the same situation. I mean, I was 29 when I was diagnosed and had a boyfriend. I mean, he became a husband a year later. But I think we, it sort of became more of, oh, okay, maybe then. Because I. Back in those days there wasn't really any DMDs that were offered to people that were pregnant. So you have to sort of be on treatment and not be on treatment. So I was kind of like, oh, well, in that case then I guess I need to have children then and then sort that out and then go on treatment. But the funny thing was that I have had all the sort of relapses so they could have put me on treatment. But then having had children, I was relapse free for a very long time. Again, very privileged about that. But then I suddenly couldn't have a DMD because I hadn't had a relapse because that was what the criteria and things were around back then. So then it was a little bit, bit weird because I do remember when I then had the relapse and I went to speak to a neurologist, he said, well, you know, you should have thought about this 10 years ago or something. And I was like, well, the options weren't there then. And it's, it gets, yeah, half a stranger, but I'm on treatment now, so it's all good. But, but it's just. Yeah, it's funny because she's like, well, I don't have a time traveling machine. I can't go back there and talk to that neurologist and say, well, actually.
- [32:40]
F
Yeah.
- [32:43]
D
How about like changing treatments? Have you had to have those conversations?
- [32:49]
F
Yeah, and actually when I had to change from my first treatment to the treatment I'm on now, it was because of a relapse. And it kind of took me back to how I felt when I was diagnosed and I wasn't expecting to feel like that. Like, I kind of thought that I had come to terms with my diagnosis and I was okay. But I think when you're then faced with that challenge of picking a new treatment and starting it and going through all those emotions again, it really brings it all back. And I found it actually a really difficult time. And yeah, again, having conversations with the, the healthcare professionals asking if I want a baby still.
- [33:32]
D
And did they ask about traveling?
- [33:34]
F
No, they didn't. No, that was the time that they didn't and they should have and yeah, I think so. Yeah. Having those, having those conversations. But then the other thing was speaking to other people that had tried the different treatments that I was offered because I just couldn't really decide what would be best for me. So it was just quite helpful to hear other people's experiences of those treatments and, yeah, just see how they got on with it. But it was, it was definitely difficult and like I said, it took me back to the time when I got diagnosed and I had all those feelings and. Yeah, just all those thoughts again and considerations that you have to have when picking a treatment.
- [34:21]
D
Yeah.
- [34:21]
F
What about you?
- [34:22]
D
Yeah, no, exactly that. Because I, I mean, I've had since 18 years since my diagnosis now and I guess I was on treatment for about, it's nine years or something like that and I've been relatively okay on it and it's, you know, side effects and not everyday niggles, but like no relapses. And recently I had an MRI scan and I wasn't really expecting any bad things. And then they told me that I had two new lesions and I need to think about treatment and it, it really. What. What's going on? Because I just assumed I've had some nickels and things last year, but I didn't think they were big enough to be sort of a relapse. So I guess it was more silent relapses and. Yeah, exactly that. It just took me back. I suddenly was like, oh, wow, this. Yeah. How what we're doing now then and then. And you know, working for the Ms. Trust, I see the people dealing with those kind of questions all the time, but it is quite different when it suddenly is you. So, yeah, I'm doing exactly that. Sort of looking people's stories about the treatment options that they've given me, looking at the information that's out there, obviously the Ms. Trust website and Ms. Decisions and that sort of stuff. But, yeah, it's so easy to just tell people about, oh, here are all these great resources. Read this, look at this, look at that. But when you actually have to make the decisions yourself.
- [35:45]
F
Yeah, it's really hard.
- [35:46]
D
Yeah. One part of me just was, want to go and like. But just make it for me. But, yeah, no, I'll get there. But I think emotionally is quite, quite tough.
- [35:56]
F
I did have it. And when you've been diagnosed for so long, you think, oh, yeah, like, I'll, you know, whatever happens, like, I'll deal with it and I'll be fine. But then when it actually does happen, you're like, oh, yeah, it's not great. It really takes you back and. Yeah, it's just difficult to deal with, isn't it? Because you kind of forget when you're. When you're on a treatment for so long and it's worked and you're kind of happy with it and then all of a sudden you have to think about that again. Yeah, yeah, it's difficult.
- [36:28]
D
Yeah. But no, it. And again, it really does help to speak with other people with Ms. Because they get it and I think it's that kind of. I. Ms. Is so different, you know, everybody is so different and. And having met lots of people who are, you know, like myself, fairly, you know, able can run and do things like that, or to people who are more disabled, who are in wheelchair. I mean, I just love meeting people to. Just to hear their stories and things. And I think it's. You don't know what's around the corner. Like I said, my mum had. She was worried, you know, she compared me a lot to my grandfather.
- [37:03]
F
He.
- [37:04]
D
He used the wheelchair on a daily basis. But, you know, I. I have great memories of him when I was little because we used to, like, we used to have these races in his living room. He was in his wheelchair. I put. Got on an office chair with wheels when I had a great time. And I feel like just meeting and sort of seeing people, that kind of future scares me less, I think, because I see people live well with Ms. In all sorts of, you know, ways of life, of how they live with disability, and I feel like that's, that's. But it's really hard to sort of say, oh, this person is the face of Ms. Because it's so different. You know, people will look at us and go, well, you know, that's not me. I'm not running, I'm not doing that. But, but, but then someone who is far more active than I am will look at someone in a wheelchair, will say, that's not me. And it's, it's, it's really. Because we're all ms, aren't we? But it's just very different. So we just.
- [37:58]
F
But, yeah, but I think that's why it's, it makes having conversations about Ms. So difficult as well, because it's really difficult to understand that it can affect people so differently and people can live so differently with it. So when you're having those conversations with strangers or with friends and family or whoever it might be, it's so difficult to explain how it is for you when they might have seen some other things. Whether it's like in the media, on social media, anywhere. Because yeah, it is just so different for everyone. And it's such a strange condition. Yeah, isn't it? Because, yeah, how can it be so different? But yeah, so I think like what we're doing, kind of raising awareness about the importance of having those conversations is so important and just explaining what it's like for you because that's all you can do, isn't it? Just kind of explain to people as best as you can how it affects you, what's support you might need and then kind of hope that people can understand that and help you when you need it.
- [39:09]
D
Definitely. I couldn't necessarily bed myself.
- [39:12]
F
Yeah. So I think a tip I would give to anyone that is kind of worried about having conversations about Ms. Or just doesn't really know how to. I think one thing that's massively helped me is speaking to other people living with Ms. So through the Ms. Together community and other communities as well, just kind of finding those people that you can relate to, finding people that are going through similar things and just kind of seeing how they're navigating their journey with Ms. And how that could help you. But I think also just being honest and as open as you can with the people in your life, telling them as much as you feel comfortable with and, you know, just kind of explaining how it's affecting you and how they can support you.
- [39:57]
D
And I would say maybe if you're not ready to talk to someone, it's okay to be. Sounds a bit creepy, but be a lurker as well. Go and look in the, like the Ms. Trust Facebook group, read some Conversation, read what other people have said. And then maybe when you feel like, okay, well, these are the words that people are using that feel, you know, that kind of clicks with what I'm thinking. And then maybe then you can get some ideas and then maybe you can start, you know, you can post anonymous, you can do these things. And then eventually maybe you can get some tips from other people on how to speak to your family and friends. Because sometimes actually, even though we're really close to family and friends, they can be the most difficult people to talk to. Especially if you only need to ask for help. Because we're so rubbish at asking for help.
- [40:43]
F
Yeah, definitely. But equally, I would say you don't need to kind of be open like we've kind of been talking about. You don't need to tell the whole world about your Ms. If you don't feel comfortable. You can just confide in that one person that you feel could support you the best, and that's enough. I think it's just kind of figuring out what will work for you and what will support you best in your journey.
- [41:09]
D
Yeah. And there are charities to reach out to as well and talk to both, you know, talking therapies type people. But, you know, Emma's Trust and Emma's together, we're there to help you get talking if you want to, when you're ready.
- [41:25]
B
Yes, talking is important and it can be really hard and it's, it's, it's good to know that both at the Ms. Trust and all the other charity partners are opening up the, the floor here and getting people ideas and things because I think it's important. Kind of like what Amy said. Not everyone is, is open, not everyone wants to sit and talk about their life on a podcast, but it's still, it doesn't mean that you can't have conversations about them. So I feel like it's, it's such an important topic and there is so much resources out there to get. So hopefully, if you've been listening today, you've got some ideas on how to open up your conversations.
- [42:05]
A
Absolutely. No, it's so important, isn't it, Helena? And yeah, just like to say a big thank you to Amy for joining us on the podcast as well. She was, she was fantastic. And to Claire as well. And if you are looking for some of those resources that we mentioned, you can find them in the show notes as well. So again, we are here to support you. And a big thank you as well to our charity partners as well, who we've been working with. For this week. So if you do have any questions about ms, you can of course contact our free confidential helpline team. They're available from Monday to Friday, excluding UK bank holidays, and that's between 10am to 4pm Outside of those hours, you can of course leave us a message and we'll get back to you as soon as we can. The number for the helpline is 0800-03-23839 or you can drop them an email if you'd rather ask without speaking to someone on the phone. The email address to get them on is asking mstrust.org uk and we will of course link to those resources down in the show notes as well.
- [43:17]
B
And you can also find us on social media. And as this whole podcast is about conversations, I would really give a big shout out for our two Facebook groups that we have, the Ms. Trust Facebook group and the People Living with Advanced Ms. Facebook group, which are great places for conversations about Ms. So you can find those ones on Facebook. You can also find our page on Facebook. You can find us on YouTube x TikTok and Instagram and LinkedIn as well. If you're a health professional who's listening, maybe you want to give us a follow on LinkedIn. You can find this podcast in places where you would normally listen to podcasts like Apple podcasts, Spotify and YouTube Music. Do get in touch with us, let us know what you think of the podcast and what you think about our resources and what you think about Ms. Awareness Week in general. Be great to know some feedback and if you want to do that, you can get in touch via social media as mentioned, or you can drop us an email@commsmastrust.org See you next month.
- [44:25]
A
Bye bye bye.