Welcome to Living Well with MS, where we are pleased to welcome Yasmin Neves as our guest! Yasmin is an HR professional and recently joined the Overcoming MS team as a facilitator through our ‘Train the Trainer’ programme. In this episode, she talks to Geoff about topics to help you with your work: navigating work with MS, how to talk to your employer about your MS, taking time off work for MS and the pros and cons of being self-employed after an MS diagnosis.
Overcoming MS 00:00
Welcome to Living well with MS. This show comes to you from Overcoming MS, the world's leading multiple sclerosis healthy lifestyle charity, which helps people live a full and healthy life through the Overcoming MS Program. We interview a range of experts and people with multiple sclerosis. Please remember all opinions expressed are their own. Receive monthly tips and ideas about living well with MS by signing up for our newsletter at overcomingms.org/newsletter. And now, let's meet our guest.
Geoff Allix 00:38
Welcome to the latest edition of the Living Well with MS podcast. In this edition, we're talking about career and work with MS with Yasmin Neves. Now, you might be familiar with the name because actually Yasmin has already been on our Coffee Break. She was on edition 17. So if you want to you can listen back to Coffee Break 17. But for people who haven't heard, firstly, welcome, Yasmin.
Yasmin Neves 01:03
Thank you. Nice to be back.
Geoff Allix 01:06
Could you briefly talk about your MS journey? And how have you found Overcoming MS.
Yasmin Neves 01:11
Okay, so I listened to that podcast yesterday, just to remind myself of where I was back then. That's about two and a half years ago when we did that. And I can't believe how much has changed in that period of time, mostly for the good. So brief overview. My first known MS symptom was 2016. But like a lot of people looking back now I had it probably a lot longer than that. So many of my illnesses and symptoms make so much sense throughout my life. My diagnosis took two years. So then I was officially diagnosed in the summer of 2018. And then I was very fortunate to stumble across like a lot of people stumble across the Overcoming MS program, a month after my diagnosis. And I've said this before, I'll say it again, remember, it was a family friend of my mum said you need to get this book. So ordered George Jelinek's book, it came, this big book. And I was completely overwhelmed by it by it, there's just so much information in it. And I was in such a dark place back then I was depressed, anxious, completely lost, completely overwhelmed. And reading that book was the last thing on my list. So I was very fortunate. My stepmom took it off my hands, read it for me, made plenty of notes, and basically said, "We'll take this one step at a time. So let's start with the food." And we literally just started one step at a time. And it took probably six months to really nail the food, then looked at meditation then looked at the exercise. And so yeah, it was a bit of a journey. So that's kind of a little bit of my MS story and how I found Overcoming MS.
Geoff Allix 02:58
I think the Handbook, which is subsequent to that makes it easier. So I'm going to obviously say I got the full Overcoming MS book and read the whole thing. And it's and it's very scientific, if you from a scientific background, you'd appreciate it, but it it is in huge detail and everything is justified and explained and referenced. Whereas the Handbook is just like, |Okay, let's make this simple steps." This is it gives you all the steps you need, without all the scientific references necessarily. So there is more of an element of trust, maybe but then you could look at the full Overcoming MS book, if you want to get all the 1000s of references in it at the back. It's all scientifically reference. But the handbook is simpler, and maybe an easier way in I think,
Yasmin Neves 03:45
Definitely. And then there's the other book and I can't remember the name of it. I haven't looked it for a number of years. There's the one all about the stories when I was in that that place. I remember reading that and thinking, oh my gosh, there's hope here and real life stories. So I did read that one.
Geoff Allix 03:59
So you're now a facilitator for the charity. So tell us a bit about what does it mean to be a facilitator and what expertise do you bring to the role of being a facilitator?
Yasmin Neves 04:11
Yeah, I'm well thinking back to when I got that diagnosis. And when I first found Overcoming MS to think all these years later, I'd be doing work with the charity is just, I can't quite believe it. And I'm really thankful for the position and the opportunity. And I'm really excited. So I've done a little bit of work with the charity over the last couple of years and done some talks and different bits and pieces. But now I'm a fully fledged facilitator, and I'm really, really excited about giving people maybe the bits that I didn't quite get when I was on that journey of diagnosis or in those early days because it is really overwhelming. And the pillars and program they are absolutely fantastic. And they're all scientific, they're all evidence based. But a lot of them require behavioral change, a lot of them required to actually do stuff on a consistent basis, which can be really, really hard as humans. We've got our behaviors, we got our habits that are mostly automatic, to then change them can be tricky. So I'm excited to kind of bring a bit more of that and do more talks around how do we actually make these changes happen? And how do we make them change for life. So I'm hoping to bring some of my real life experience because I've done a lot. I've changed a lot in my life over the years on my journey, and I'm still on that journey of changing bits and pieces. So I've got real life experience, real life tools. And then I can also bring in, I've done a lot with people over the years, whether it's in my HR role, whether it's managing properties, whether it's coaching people, and holding safe spaces, facilitating retreats. So I'm hoping that bringing these two elements together, hopefully, I can bring a little, or all of that to the charity and make a difference. So yeah, I'm excited.
Geoff Allix 06:03
So people who are watching this on video, might have noticed that you've got big logo behind you. So you're the founder of a Healthy HR. So HR, I mean, people around the world might not be familiar with the term. So it's human resources. It's like personnel, development, training, that sort of part of business. So you're the founder of Healthy HR. So as a human resource professional, is something that a lot of people consider. If you've got multiple sclerosis, it's quite common that it's not obvious when you're first diagnosed. Certainly with me, it wasn't. We have, I think it's quite widely around the world now where you have the sunflower things you can put around your neck, because sometimes you need to sort of say to people, like, "there's just some considerations I need," but it's not really obvious, you know, I have all my limbs, I'm walking, so you may well be in a situation where you don't have to tell your employer and they wouldn't know. When I was diagnosed, I could have not told my employer for a number of years, and they never would have known. But what considerations as someone who works in human resources, or as a Human Resources consultant, should someone consider when they think about whether they should tell their employer that they have MS or not?
Yasmin Neves 07:25
So that's a really good question. I'm gonna start with really small caveat. So I run Healthy HR, and all of my HR career has been based, working with UK employers in UK law, very mindful that the Overcoming MS community is worldwide. And the HR practices and law across the world are different. So what I'm going to be saying today is going to be with a focus on how we do things in the UK. And obviously, none of my advice is going to be specific to anyone's individual circumstances, because we are all so different, we're all so unique. So anyone who genuinely needs to know a little bit more about their own circumstances, I'd encourage them to get some tailored advice for them. So that's my caveat, for starting all this, I don't want anyone to take anything that I'm saying going, "Oh, I'm gonna go do this." Because we need to better understand people's individual circumstances. But whether you disclose it or not, is very much going to be based on your own individual circumstances and what is right for you. Now, if you were my friend, and you came to me and asked me that question, what I'd be saying to you is, why not? Why wouldn't you disclose it, you may as well. Because if your employer knows that you've got this disability, or you have symptoms, if you haven't been diagnosed, yet, you might have symptoms, which may impact you day to day, then your employer needs to know. So they can potentially put stuff in place to help even the playing field so you can get the right support, so you're not disadvantaged in any way. And also, knowledge is really important when it comes to employment law. And if your employer doesn't know, then they can't be expected to do anything to support you. If they do know, then the emphasis is on your employer to make sure they make adjustments to be able to support you. Now, if you tell them, and you are treated differently, you're treated unfavorably, or, you know, the relationship changes for whatever reason, then, one of the biggest questions you're gonna want to ask yourself is, is that the sort of place you want to be working? Is that the sort of environment that you want to be in? And for me, it always comes down to what feels right. What do you want to put your energy into? And if you tell them and things change then maybe you're not in the right place, you're not in the most supportive environment. And then you want might want to decide what you do next. MS in the UK is classed as a disability. So that means you haven't got to prove it. Whereas a lot of other conditions, first of all, you have to prove that you're disabled. There's very few actually in the UK isn't there, it's quite surprising. It's one of the one of very few. One a very few. But you don't necessarily have to have that diagnosis in order to be classed as disabled. If your symptoms have an adverse effect on your day to day activities, then you may be deemed as disabled. And that means that you can get some extra protection within the workplace. So there's lots of things to consider. There's lots of things to take into consideration. But like I said, at the start with this, if you were my mate, and I was having this conversation, I would say, I would disclose it. So one, you've got the protection, they've got the knowledge, the duty is then on them, if they've got that knowledge to make sure they're doing things to support you. And you know, it's always a two way process, the employment relationship. So a lot of people that I speak to always think, "Oh, my employer can't do this, they can't do that." But we as people have a responsibility, too. And I think it's really important to be open and honest. And make sure you're telling people exactly what's going on. If for whatever reason, you don't tell your employer, and then your performance, your conduct is affected in some way. And then they start trying to formally manage you. And then you come back and say, well, actually, I've got this condition that you did it, and I've had it for a number of years, they might then go, oh, hang on a minute, why don't you tell us there's then a bit of breakdown of trust in that relationship. So I just think if you're upfront, straightaway, I think it helps. And hopefully, times are changing. And there are more good employers out there. There are still some bad ones, there are. And there are still some prejudices, and there are still some unconscious biases. But like I said, if you're not in a place, we're going to be fully supported. Maybe that's not the right place to be. And maybe you want to find a good employer.
Geoff Allix 12:24
Yeah, I mean, I told my employer straightaway enough. Yeah, it's fantastic. I've been promoted since I've told them I've found Yeah, I mean, it's not cause any problem and actually, in a way, if they value me and what I do, then, the other thing is you find out other stuff, because I actually found that we have a policy that if I am signed off through ill health, so if I got really bad cognitive fog, something. Because my work sort of I don't have to do anything really physical, but I'm just working at a computer. So yeah, if I if I got really bad cognitive fog, and I couldn't work then I actually found out there is a policy in place, I'll actually be paid until the day I retire. So not full pay, but a fair amount. So yeah, so I wouldn't have known about those things. So what if someone's thinking about changing jobs? So if you're actually a new employee, would you tend to tell someone in the recruitment process? Or could that bias the person against you?
Yasmin Neves 13:41
Again, another really good question, and it depends on the individual circumstances, but general consensus, I would encourage people to disclose it during the interview process, if they feel they need some reasonable adjustments during the process. So depending on your symptoms, depending on how MS is for you, for example, if you get cog fog, you might need to see the questions in advance before you're asked them verbally during the interview process. So you might have like an extra five minutes before the interview starts, you have the questions given to you and you can just look at them. So you've got a bit of time to process it rather than having the pressure of the interview and then trying to think of the answer all at the same time. So if you feel like your symptoms or your MS could potentially disadvantage you compared to the average person, then disclose it. So you potentially have a reasonable adjustment to help level that playing field during the recruitment process. Now, in the UK, there is a thing called Disability Confident Employer. And a lot of employers sign up for this and what they basically say is they make sure their recruitment process can be tailored and a setup to their recruitment and their employment practices encourage the employment of disabled people. And as part of that, if you meet the minimum requirements, whilst going through the shortlisting stage of the interview process, then the some employers guarantee an interview if you're disabled. So if they've got like five applicants, they all meet the criteria, but they've only got space to interview three. If you tick that box, you're guaranteed an interview. So that might help.
Geoff Allix 15:40
So you need to meet things like the exam requirements and things like that. Basic requirements, but then you've got an interview.
Yasmin Neves 15:48
So you can't like apply for a CEO role if you've never done that level of job, maybe you've done an entry level job, you have to be able to demonstrate that you can do it. So yeah, as long as you meet the certain criteria, you'll be guaranteed an interview. So another reason to disclose it during that recruitment stage.
Overcoming MS 16:07
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Geoff Allix 16:24
What sort of things could you ask for what sort of adjustments in your workplace or accommodations could you ask for from your employer? And how would you go about asking?
Yasmin Neves 16:33
It depends on the circumstances, the size of the employer. And it's all about having a conversation and come into an agreement. So some companies are so small, they haven't got an HR department. So you'd actually have to just go to your line manager or the company owner depending on how the company is setup. If you're lucky enough to have a HR department, then you could potentially go to them. But there's a whole host of adjustments that could be made. And it's important to remember that any adjustments is not about giving anyone an advantage or making sure that people have special treatment, it's about making sure that people have access to the same opportunities. So like I said, I've probably said it many times before, it's about leveling that playing field for everyone. So in terms of adjustment whilst you're in work, it could be adjusting your working hours, it could be adjusting, working from home a little bit more, or working at a different location. It could be changing your setups or changing how you sit on a chair or your desk. The list is endless. And they have to be tailored dependent on how your MS and how your symptoms affect you. And what is needed as a job. It's all about making sure that you are given the support for you and your role.
Geoff Allix 18:04
In the UK, it's expected that they would make reasonable adjustments, I guess? So if it's within reason they should do it. There are going to be situations though, where a symptom because MS is wide ranging, it could be that you've got cognitive fog, and so you can't concentrate and you've got a desk based job, it could be that you've got balance issues, and you're doing a manual job. That means that you can't do that it could be that you have fatigue. And it means you just can't do the hours. And so you've decided that even even part time work might be impossible, and certainly full time work. So if you are going to take a period of absence from the workforce, what sort of tips would you have for someone considering that?
Yasmin Neves 18:50
The first thing you'd have to you're going to want to check what's available to you, in your company where you work. Some larger companies, they might have policies that allow you know, up to a year off for a sabbatical whether it's paid or unpaid, it will depend on the company. So first of all, go and check what's available to you, if you work in a smaller business, it's likely that they're not going to have anything like that in place. MS is complex, and it is one of those conditions that you never really know what's around the corner, you don't know how it's gonna impact you. So what I would say if you're going to take a significant period of time off, think about what you might do if suddenly your condition changes or you know, maybe your symptoms decrease and you come back to where you once were in terms of your health, how you're going to feel if suddenly you've got a whole year off, it's all been planned. How are you then going to kind of find have your purpose how are you going to keep motivated without having that thing in your life that maybe was once important and that can go either way. So if your symptoms get worse, then you haven't got enough time off what are you going to do? So it can be quite complex. And you're gonna want to think about financially as well, because at the moment, most employers, they don't have any sort of provisions like this, especially pay, they're not going to pay you for extended periods of time off. So something about financially, how you're going to manage how you're going to pay your bills, how you're going to continue to live your life to its fullest without that. It's, about having an open conversation, open dialogue with your employer, if you are struggling, and you're thinking that you need some time away from the business, I'd encourage anyone to initially just have a conversation, explain what's going on, explain your symptoms, refer them to, you know, the Overcoming MS website, or whatever website you need to so they can get the more information that they need. Some employers, they might refer you to see a occupational health practitioner. So that's an independent, medical, normally a doctor or nurse, medical practitioner, who can evaluate your fitness for work and how you can perform your job well. And they are an expert in terms of workplace health. And that might help. And they might actually come back and say, if you make these adjustments to the role, whether it's reducing your hours, whether it's changing your responsibilities ever so slightly, you may not need that time off, because we're making those adjustments in order to keep you fit, healthy and well. So it's all about having that initial conversation, seeing what is potentially available for you, and trying it. Now, there are some employers where you've gone, you might make a request to change your hours or work more flexibly or whatever it is. Now, some employers will automatically say no, because it's new, and they've never tried it before. And most of us humans don't like change, it can be a bit scary. It puts us in that fight or flight stage of "oh I don't like change, let's just say no." So if they do their initial reaction is no, we can't do that. I wouldn't take that as the first answer, I would go back and explore the reasons why they're saying no. And I say to everyone, just try it. There is no harm in trying anything, there's no harm in maybe trying a temporary change, no harm in trying whatever it is you're suggesting, if it doesn't work, we can just revert back and then go back to the drawing board and then see what we can do next. I may have gone off tangent there.
Geoff Allix 22:55
I want to talk about finances. One thing that just occurred to me, it might be worth checking life insurance if you have life insurance, then a lot of life insurance has a critical illness component. Now I'm in a situation where I did have life insurance, which included critical illness cover, which I stopped a few years before my MS diagnosis, but would have immediately no questions asked paid off my mortgage. So well, more than that it would have. It was because I was self employed. And it was to cover that and sort of died. And then I went into full time employment. And I have a sort of scheme where if I die in service, I get four times or my wife gets four times my salary. So that was kind of, in lieu of that. It was like, "Well, what if I died, I'm self employed." So we have this. So I took out life insurance, and then I stopped it because I was employed again. And then But I know people who it has paid out. And it could be a quite a lot of money. It could be like, a quarter million pounds half a million pounds. It's like this isn't, is a not insubstantial amount of money. So if you have life insurance, just check it out. Because it may just be that it will pay up straightaway.
Yasmin Neves 24:08
It's a very sore subject for me. I remember when I got my diagnosis, one of my friends phoned me up and said, check your life insurance policy. And I said, Oh, okay, I'll check it. I never took it out. I can't remember why I just couldn't afford it back then. And then I remember the thought of oh, there's a there might be positive spin here might have my mortgage paid off, but no, I didn't.
Geoff Allix 24:31
It cost about 12 pounds a month when I paid it and it would pay me 250,000 pounds.
Yasmin Neves 24:37
Really, really good point that you just mentioned, check your policies, but also one of your benefits, depending on where you work, your employer might have something like that in place for you. So if you disclose your diagnosis, they might say, "Oh, actually, we've got this cover as one of your benefits" or there might be something in place that you didn't know about that they can provide you.
Geoff Allix 24:59
So my cover at my work is if I can't work anymore. So it will only kick in if I can't work. But you're saying about revealing things to your employer. Well, I think that it would be, because it's going to be an insurance company I'm actually dealing with not my actual employer, if I've said this years ago, so I told them in 2016 or something, then it's documented. Whereas if I suddenly said, I'd never told you about this, I've got MS. And I can't concentrate to work anymore, can I do this benefit? And I would imagine the insurance company go hang on, this was completely undeclared. But if I declare that all the way through, and then they can't say that, because I've been working for years with that it's not a problem.
Yasmin Neves 25:42
There might be things like private medical insurance, as well. So when you start maybe getting symptoms, maybe you haven't got your diagnosis, if your employer has private medical insurance, it might speed that process up. I remember when I went for my diagnosis, I was working for an employer. And it was the first time I didn't have private medical insurance. So the diagnosis took a lot longer. I remember thinking, Oh, if only I had that benefit. So there are things like that. So it might be worth saying. So you can find out if you get bits and pieces like that.
Geoff Allix 26:11
Yeah. So you're now an entrepreneur, so you have the Healthy HR consultancy as your business. And so do you have tips for somebody might want to leave normal, being employed traditional employment if you'd like to actually go self employed? And what are the pros and cons of having MS and running your own business?
Yasmin Neves 26:33
Yeah, don't do it. I'm joking. No, it's the best thing I've ever done. So when I got diagnosed in 2018, like I said, and I remember just looking at my whole life and reevaluating it all, and got the diagnosis. Two weeks later, I bought a very old house. And at the same time, I went all in on the consultancy. So I was running, running it alongside my full time job initially. And then when the diagnosis came, I was like, I just need to make some changes. And so I quit my full time job, and started running the business. And for the first year, I did not sleep, because I was like I've got this new mortgage. And I've got this diagnosis, I don't really know what's going on with my health, I was really, really poorly, like really poorly, my body was breaking down. And I suddenly had to find a way of earning my own money, being my own boss and learning how to run a business. So I literally just laid in bed for the first year going what am I doing with my life? In hindsight, though, it's genuinely the best thing that I've ever done for me, because I like to be my own boss, I like to work life balance is very important for me, and I do work. Some people will say I don't, but I do work really hard. But I also make sure I have the work life balance. So for example, because I'm my own boss, and my well being is so important for me, I make sure I have a regular massage. And I can only do that like on a Monday during the day. Whereas if I had traditional employment, it's very unlikely that my boss is going to be that flexible that I can do that on a monthly basis, they'd be like, that's not really important. But because I'm my own boss, I can decide my own diary. And when I work and when I don't know. They're obviously cons because I don't get things like sickness benefit, which might be quite helpful with a condition like MS. But then I do get other perks, like I can decide who I work with, to a certain extent. And stress is so important with this condition. So, so important. And if there is a client, or a project, or something that I'm working on, that doesn't quite align with my purpose or what I think is important, and it causes me stress. I'm fortunate enough that I can say actually, this isn't for me, and I can turn it away. Whereas when you're an employee, you're getting paid to do your job, you haven't got that much flexibility. So there's loads of pros and cons, and you've got to do what's right for you. What I would say if you are passionate about something, and you've got a calling to really go and run your own business, then give it a go. Like what's the worst that can happen? You might have some savings in the bank that will cover you for a period of time. You put your all into it. The worst thing that will happen is it doesn't work out and you just go back and get another job. I strongly believe there's always a solution for something in life, you can always find a way around it. And it's always better to try and regret it if it didn't work then not to live in that regret because you didn't try it. And so for me it's give it a go and what's the worst thing that can happen? But they're things to consider, like I said, you're not gonna get sick pay, you're not going to get benefits. You have to make sure you get here, you've got your insurances in place to cover yourself. And I will say to people who ever talk to me about starting their own business, just have some money. So you know, you're covered for like six months. If you can pay your bills, then you can not think about that, and then put everything into another business. But yeah, that's the answer.
Geoff Allix 30:24
Yeah, no, I went self employed, I had a buffer, sort of like that just sits there and doesn't get touched, just in case buffer money. And the other thing I'd say, is, and this is not related to MS at all, but it's just like, Don't worry, you need to have holidays and things. Don't think about how much money it's costing you to go on a holiday. Because almost always, if you book a two week holiday, someone will offer you two weeks of work for that. And you just start to mentally add up, like 10 days worth of that. And then you add that on to the cost of the holiday. And it's suddenly the most expensive holiday you've ever been on. And you just have to stop yourself to go no, I am. I'm ignoring that. And I won't add that money on. And I will not do that. And that that was that was to me, the difficult thing is that otherwise, you never go on holiday.
Yasmin Neves 31:14
Now this is might not be the right thing to say. But we live in an age of technology. So we just talked a moment ago, before we started this podcast, I've just been away. And I could still do a lot of my work. And I was on holiday. But I still have that balance. And I still was able to keep an eye on the business.
Geoff Allix 31:33
So just to wrap up, though, is there anything else that you think would be a useful thing to add?
Yasmin Neves 31:38
I'm gonna go back to what I said at the start. This is all so individual, this is also personal. When we're dealing with people we are also different. So if we add MS into the mix of that, and we know how different symptoms are and how the disease progresses with different people, it's making sure that people are getting the advice and do what's right for them to what's right for me, may not be right for you. And what's right for you may not be right for someone else. Talk to someone. So if you're not sure if this has all gone up in your head and just having the mental conversations if you can find someone to talk to to have those conversations, if you haven't got anyone to talk to write it down, just just get out of your head, weigh up your options, whether you talk to employer, we're gonna tell them that, like I've said, it's always about, I think it's about being open and honest and transparent. And that is a good starting point. If you can just be authentic with who you are, then hopefully, whoever you're working for will meet you at that level. And that will be a good working relationship. So yeah, that's all.
Geoff Allix 32:43
Thank you very much for joining us Yasmin Neves, and yeah, thanks for coming back on the podcast.
Yasmin Neves 32:49
Overcoming MS 32:50
Thank you for listening to this episode of Living Well with MS. Please check out this episode's show notes at overcomingms.org/podcast you'll find useful links and bonus information there. Don't forget to subscribe to the podcast so you never miss an episode. And please rate and review the show to help others find us. This show is made possible by the Overcoming MS community. Our theme music is by Claire and Nev Dean, our host is Geoff Allix. Our videos are edited by Lorna Greenwood, and I'm the producer Regina Beech. Have questions or ideas to share? Email us at podcast at overcoming ms.org We'd love to hear from you. The Living Well with MS podcast is for private non commercial use and exists to educate and inspire our community of listeners. We do not offer medical advice, for medical advice please contact your doctor or other licensed healthcare professional