S7E09 Relationships and MS with Nikoma and Simone Bell

Simone Bell  00:00

Strain and the stress and all that MS or chronic illness brings to a relationship. So that we’ve spoken about the resentment, the guilt, and if you’re not sharing how you feel, it grows, it festers, and then little things become big things, and it impacts a relationship. So you know, if you’re feeling like a burden, I’m feeling burdened. If you’re feeling resentful, I’m feeling resentment, but we’re not sharing, we’re not talking, so we’re not working through it. I think that festers and can really impact a relationship.

 

Overcoming MS  00:33

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

 

Geoff Allix  01:09

Welcome to the latest edition of the Living Well with MS podcast. Joining me on this edition are Nikoma and Simone Bell. Nikoma and Simone are a married couple living with MS, and it’s Nikoma who has had an MS diagnosis, and they are the authors of Marriage and MS Embracing Life and Love Beyond a Diagnosis. We’ll obviously add all information in the show notes, so have a look at that. But to start off with, for both of you, could you introduce yourselves and your relationship to multiple sclerosis?

 

Nikoma Bell  01:41

So if I’ll go first, I’m Nikoma. I’m the one that’s diagnosed with relapsing remitting, MS in 2018 I am a touring sound engineer. Well, I used to tour. I don’t tour anymore because of the the MS, it kind of affected. It affected so much of my life, from my optic nerves down through to everything else. And yeah, I was diagnosed in 2018 and I haven’t really toured since.

 

Simone Bell  02:25

And I’m Simone, Nikoma’s wife. I’m a coach, actually coach of caregivers, helping them to find a sense of purpose again, and also work with organizations and helping them to support the carers that they have in their workplaces. And I’m also a trainee counselor, which is, I want to go into private practice, just really taking the support that I give already, taking that to the next level through counseling therapy.

 

Geoff Allix  02:51

So we mentioned that you’re the authors of Marriage and MS, Embracing Life and Love Beyond the Diagnosis. So could you tell us a bit about the book you’ve written, and if you could give us your best relationship tip for people with MS and for their partners?

 

Simone Bell  03:08

The book really we wanted to share our story, really one when Nikoma was diagnosed with MS, we really couldn’t find a lot around how it affects the whole family and affects, you know, partnerships, marriages, etc. And so we started sharing on social media through our Instagram page, Marriage and MS, and it really grew from there. And we decided, you know, we could everything we’re sharing, really should put this in one place so that people have got, like, a resource that they can find. So we started writing in the book, we write about everything from relationship advice, intimacy, parenting, finances, our faith, which is a really a one stop shop for everything, sort of how MS affects relationships and something good that we did is at the end of each chapter is like a reflection piece. So what it means is that there are questions there that couples can work together on and so that they can apply it to their life and reflect on what they’ve just read and how they can apply it. And with regard to a relationship, tip, I would say, is remembering that you are in a relationship like you know MS isn’t the totality of you, and so make sure you you still prioritize your relationship and find time for each other.

 

Nikoma Bell  04:30

Tip that I would have is just communication. That’s the the number one thing, because when, if you’re going through something as an MS sufferer. Then, if you don’t communicate that effectively, then the other person, how are they going to ever know? So it’s like you have to communicate that number one, and also then just communicate collectively. You and your partner.

 

Geoff Allix  05:02

That’s a really good tip, I think, as a married person, is it’s you’ve got to tell your partner whether it’s an MS. Is it just that I’ve been lazy because maybe I have, or was it an MS thing that I’m not doing? So, you know, am I? Yeah, I really can’t clean the kitchen because I’m absolutely shattered today with MS, or is it because I just don’t feel like, you know, and you know you need to say, don’t you otherwise, how do they know that?

 

Simone Bell  05:30

Yeah, definitely. It stops frustration. It stops, you know, miscommunication, it leads to arguments, and that’s on the flip side as well. You know, for as a wife, spouse, carer, whoever, partner, you know, we also have to communicate how we feel and, you know, and maybe we’re having down days, etc, and just, it’s just talking to each other. It’s really important.

 

Geoff Allix  05:53

It’s a question for the Nikoma. So men are in the minority when it comes to an MS diagnosis. So we both lucked out there, and particularly Black men are particularly minority. So yeah, you’re really in an unusual your situation. So there’s a thing called the Brotherhood Support Network. So what is that? And what should healthcare providers and the MS community know about the experience of black men, black men with MS?

 

Nikoma Bell  06:24

I guess the Brother Support Hub I set up because with when it comes to you, there’s a lot of cultural and issues that need to be addressed, and that I feel that sometimes health care providers don’t necessarily see exactly what is needed to be conveyed in their messaging, and it’s not conveyed with the correct cultural influences. So that’s why I felt that collectively, everyone in the Brother Support Hub, we can speak on a more, on a more of a cultural basis, and just be more comfortable. It’s a safe space.

 

Simone Bell  07:23

And with regard to, like you were saying there, I mean, I know I’m jumping in here. However, for me, I think it’s really important, because it’s a safe space, you know, with regard to Black men, especially, being underrepresented within healthcare, you know, missed out of, you know, basic things like literature. You rarely see men, but you rarely see Black men. And so it can lead to feelings of isolation, feelings of, you know, am I the only one going through this?Which I know was a big thing for you when you were diagnosed. So actually, it’s just a support for to for other Black men to know, actually, I’m not the only one going through this.

 

Geoff Allix  08:01

Yeah. I think you’re the first black man I’ve spoken to. I’m pretty sure. I mean, yeah, because yeah, spoke to black women, but not, I don’t think so. So for Simone, you’re, you’re a life coach, as you mentioned. So you’ve got a professional side to this as well, and you work with women who have caring duties for family members. So what are common issues among care partners, particularly those who have a loved one with MS? And what would be some tips for dealing with those?

 

Simone Bell  08:37

Well, that isolation comes up a lot, feeling like you’re the only one. Because when you’re, you know, caring for someone with MS, you know, loving someone with MS, you center that person for obvious reasons. You know they’re the one with the condition you center them, but you can be left feeling, you know, feelings of guilt, feelings of resentment, all of these things, but you’ve got nowhere to share it. And so you can kind of end up feeling guilty for feeling guilty, guilty for feeling resentful, and then having no one to talk about. So you end up saying, oh, I’m the only one that feels like this, and I’m really bad, and all of these things. And so at least these things of isolation, find somebody who is on that journey, find something. That’s why I do this. So I’ve got the coaching experience. I’m a qualified coach, but I’ve also got that lived experience, and I think that’s so important. And I know a lot of clients that kind of that’s their the thing that you know, encourage them to come to me, because you actually you understand what I’m talking about. You know, we’re not all the same, but there’s definitely things we can relate to, and the way we feel things. So yeah, just find somebody who kind of knows what you’re talking about and share. It’s just so important to talk, because holding everything in can affect you, physically, mentally, emotionally, all of these things. And so it’s important to share and take breaks. I always say I do a lot of talks and workshops, and one of the things that I always talk about is sustainable self care. In recent years, self care has become a bit of a buzz word, but it is vital for caregivers and those with caring responsibilities to take that break and that self care looks different for everybody. You know, for some people, it might only be five minutes, but take that five minutes and take that care so that you can just breathe, that you’ve got a time to pause.

 

Geoff Allix  10:27

And so for both of you, you’re also parents as well I understand. So yeah, how does MS fit into into that part of your life? And also, how do you talk to your child about living with a chronic illness and address their worries or comparisons to other families?

 

Nikoma Bell  10:47

We include Eva Grace, our daughter. She’s six, so we include her in as much as we can, and she knows very much that I get fatigued very easily, that can’t do certain things, and mummy does, like 95% of the driving. And so we we just address things topics with age appropriate ways.

 

Simone Bell  11:28

Yeah. And also, it’s important to So, yes, you know, so, so Nikoma was diagnosed in 2018 so the year she was born. So when he got his diagnosis, I was, I was pregnant at the time. And so she’s kind of, that’s all she’s kind of known. Daddy been getting tired sometimes, etc. And as she’s growing, she’s kind of become aware of the word MS, you know, I should say the letters. Doesn’t necessarily know what it is, but age appropriate. But we also know it’s important for her to still be a child, so when, you know, times when Nic has a bit more energy, we’ll go out and do things as a family, so she really understands, and yes, that there are times where Daddy can’t do things, but also Daddy does a lot with me as well, like you teach her to play the piano. There’s so many different things, so she still gets to be a child.

 

Geoff Allix  12:16

And for Simone, how do you maintain emotional intimacy? So among all the conversations about symptoms and doctors appointments and that side of things, how do you take the carer hat off and become a wife again?

 

Simone Bell  12:31

Well, we the communication is a big thing, but we don’t, like I said, don’t always center. MS, like, you know, we are, it doesn’t that’s not all we are. You know, MS isn’t our whole life. And so we were really intentional about having dates and doing things together. You know, going to concerts. Go to different we do things that remind us that we’re a couple. First, you know that MS, you know, it’s taken so much from us, we don’t want it to take everything, so just prioritizing us is what the way we manage it, and that is the way I encourage people.

 

Geoff Allix  13:12

For both of you. So one of the biggest fears for people with a chronic illness is that their condition becomes too much for a relationship, so it’s putting an unnecessary burden on it. So what would you say to someone who feels like MS or another chronic illness makes them unlovable?

 

Nikoma Bell  13:32

I would say that you’re never too much, and everybody deserves love. There’s so much beauty in when you, when you found the correct person for you, and you can compliment each other so much, sometimes when you, when one person’s feeling down or fatigued or whatever, the other person can help to bring to lift their spirits. And this is just so it’s so beautiful and so sustaining. So you you should never feel that you’re too much.

 

Simone Bell  14:15

No, you’re right. Everybody deserves that. But you know the right person, the correct person for you, will love all of you, because we’ve all, you know, and this is not to belittle, MS, really, but we’ve all got  things, we’ve all got, you know, things that we come with and that make us all an MS, that’s a part of your story, but it’s not all of you, and so the right person will love all of you.

 

Geoff Allix  14:37

To carry on about relationships, you talk a lot online, about the 75% statistic, though, so there’s a high rate of relationship breakdown when people will have chronic illness. So can you just tell us? Why do you think so many people struggle in relationships, and is there any tips or things that would help a relationship survive and thrive? For someone who has MS, for a couple with someone with MS?

 

Simone Bell  15:02

That is a horrifying statistic, that 75% of relationships impacted by chronic illness, you know, don’t survive. But I would always say, I mean, the reasons, there are so many reasons, however, I think strain and the stress and all that MS or chronic illness brings to a relationship, so that we’ve spoken about the resentment, the guilt, and if you’re not sharing how you feel, it grows, it festers, and then little things become big things, and it impacts a relationship. So you know, if you’re feeling like a burden, I’m feeling burdened. If you’re feeling resentful. I’m feeling resentment. But we’re not sharing, we’re not talking, so we’re not working through it. I think that festers and can really impact a relationship.

 

Nikoma Bell  15:52

It can grow in the background and then just become, well, snowball, and then it becomes a really big situation which shouldn’t have been situation, then it can bring in other things like resentment and and so on, so forth.

 

Simone Bell  16:11

So the importance of talk that we keep saying about that communication, yeah, is vital, I mean, and there are other reasons. You know, for some people, they maybe don’t think they can keep you know, they can’t support someone who has an illness, and maybe the person with a condition may think, oh, you know, you know, I don’t want you to see me like this. There’s so many reasons, but to overcome that, I think it’s prioritizing your relationship. Keep speaking to each other and remember why you fell in love in the first place. I think that’s vital.

 

Nikoma Bell  16:44

And I also think that there’s so much help out there so many different help lines and charities that are helping. So reach out to people. If you if you’re under if you’re under stress and you don’t know what to do,

 

Simone Bell  17:02

Yeah, and that’s why we started, I mean, you know, connect with us. That’s why we started sharing our story. Well, really, we started sharing just to share our story. It was, it was almost cathartic for us. But what happened, by virtue of that, is people then started reaching out to us and supports us. And that led to, like I said, you know, our workshops, the book, etc, because there are so many people that need that support. Yeah, as a couple, and felt like they didn’t know where to turn. So reach out to people get support. It’s really important.

 

Geoff Allix  17:31

A question for Nikoma and so fatigue and the invisible symptoms of MS are, are a big part of it, which, when you have MS, you know, but other people can’t see that. And you’ll probably get this. A lot of people just say, oh, you look so well. And so, yeah, I’m having a really bad day. You can’t see that because, yeah, you just look to have a look. That obviously impacts daily life, that other people can’t see it. They don’t understand it. How do you navigate that personally, and how do you communicate your needs to Simone or to others?

 

Nikoma Bell  18:09

I guess I try and plan as much as I can beforehand. So I go to mean, like on Monday, Wednesday and Friday after swimming I go in the morning. It kind of wipes me out for most of the day. So I try not to do too many things on the days I go swimming. And just try and plan things as much I can, and then to say to that on this day I’m gonna, may need some extra help because of XYZ, and then just try and communicate my needs as much as possible.

 

Geoff Allix  18:58

Yeah, and sometimes you don’t know, do you? Because I you could try that, and then actually, I’m fine, because you said you’re going to be terrible, and you were fine. I was like, yep. And then next week I’m not. And then I don’t know, because it’s you just don’t know.

 

Nikoma Bell  19:16

Sometimes like that. Today I went swimming, I haven’t been swimming for the past couple of weeks because I’ve been for just over doing it. So I say it’s a plan, but sometimes things override those plans. But yeah, just I think it’s key to recognize, try to recognize beforehand if you’re going to do something that is going to affect you, fatigue wise, I mean, as the as you know, sometimes it’s it’s just that out of your control. But when you can. And try and do that, try and plan it.

 

Simone Bell  20:03

But if it is outside of your control as well, is being comfortable sharing with with those, especially those that you love, who you hope will understand that. Yeah, sorry. I know I made this plan, but I can’t do that now, or just because just one of those things. And I know you mentioned that, Oh, you look well, and I know that’s one of your big bug bears.

 

Geoff Allix  20:22

So finally, you’ve mentioned your book. You mentioned you’ve got online resources. So where can people get in touch with you and find out more about your work?

 

Simone Bell  20:36

Do connect with us on Instagram, at marriage and MS, we’re on there and tik tok now very new to tik tok for, and we’re both individually on LinkedIn as well. So I’m coach, Simone Bell on LinkedIn, so feel free to connect with us. Yeah, we really do like hearing from people and just supporting in any way that we can. And our book is available on Amazon as well.

 

Geoff Allix  21:01

Okay. And with that, thank you very much for joining us. We will put all the links and information in the show notes so you can connect that way. Yeah. Thank you very much for joining us. Nikoma and Simone.

 

Overcoming MS  21:13

Thank you for listening to this episode of Living Well with MS, please check out this episode’s show notes at overcoming ms.org/podcast you’ll find useful links and bonus information there. Don’t forget to subscribe to the podcast so you never miss an episode, and please rate and review the show to help others find us. This show is made possible by the Overcoming MS community. Our theme music is by Claire and Nev Dean. Our host is Geoff Allix. Our videos are edited by Lorna Greenwood and I’m the producer Regina Beach. Have questions or ideas to share? Email us at 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.