When chronic symptoms affect your relationship (and what to do about it)

Hi there, Bend and Snap group. I'm Joanne Lee Smith. Here I am for Tuesday night session, and for some reason I've forgotten the title again. Since I started going live from my mobile phone, I don't have everything to hand like I had before when I did it from the laptop. So oh, here we go. When chronic symptoms affect your relationship—that's what I'm going to talk about tonight. So for those of you that have not been here before, I usually go live every Tuesday at about half 7 for about 30 minutes, and I usually talk about different subjects that have been relevant during my own personal journey and my own personal recovery from many chronic symptoms, chronic pains. And tonight I'm actually going to talk about something that I have never spoken about before, so there's a first for everything. Those that know me are thinking, no chance, Jo! speaks about everything. She's— but genuinely, I've never spoken about this before, and it's about when chronic symptoms affect your relationship, and maybe a few little things about what to do about it too, thrown in along the way. Because personally, when I developed my first chronic symptoms back in 2008, I had been with my Husband. I'd been with him since 1999. We met just before millennium, so we were married in 2005. We had our first child in 2000 and— I should know this— 2007. He's 18 now, nearly 19. And then in 2010, we had our second child. So it was 2008 when I had the car accident, and it was after that that I developed the first kind of chronic symptoms. So we'd been together quite a long time, we were already married, we already had a young child together, and when I was going through my recovery too, it kept coming up in the groups. Lots of people were talking about their relationships, and I'm not only talking about people that are already married, this is also relevant to If you're single and it's affecting whether or not you believe that you could welcome somebody into your future to be in a relationship with, it might not be romantic relationships. I mean, to be fair, I'm probably going more down the road of the romantic relationships, like the intimate relationships and things like that, for this particular subject, rather than with friends and family members. because so many people came and spoke and they all were saying, a lot of them were saying, there's just not much out there in, and in mind-body recovery and medicine, there's lots of people talking about lots of different things, but there is not many coaches or professionals that are talking about the impact that it has upon a relationship. And I finally just don't know why I thought about this, but I just decided to talk about it for today and just share From my perspective, how I found it really hard because there's so many different types of relationships and some partners are very involved with the healthcare of their partner, whereas my husband was not involved at all. And I did a lot of everything. I did everything alone. Appointments, research, everything that I did, I genuinely felt like I was doing it all alone. I know it sounds silly, but I always felt like he didn't believe me. I really struggled from that perspective with believing that— I don't know, I kind of thought that it was not helping. I feel pretty bad now in hindsight because A big lesson that I did learn when I started to do the research and learn more about it was that actually, unintentionally, he probably didn't realise this either, but when I look back on it, it really was really helpful, some of the stuff that he did. And there was one bit in one of the books that I was playing out loud when I was in the bathroom, I was in the en suite getting ready one night and I had my audiobook on loud, And it was the Dr. Sarno book. And I can't remember the exact words, but during the book, Dr. Sarno said something along the lines of, speak to your partners, or your partner, and make sure that they stop asking you about your pain. Coach your friends and family and your, I don't know, your romantic partners or whatever to stop talking about it and asking, he only heard that one bit out of everything I ever listened to and whatever else, he could hear that from— he'd never normally heard anything that I was playing, and I could hear him like going all smug from the bedroom being like, I got it right, I got it right! And you know what's so funny is I actually got real forgiveness in that moment, I was like, Oh gosh, all this time that I've been making up some crazy story about how you don't believe me and that you're not supportive and that you're not even willing just to listen and look, you're not even— I used to say, like, some people, once they know that you've got a certain problem, they might even do their own little bit of research, or some people's partners will go off and learn all about it and they'll do their own research and read the books and And they can be maybe the opposite, complete opposite to my husband, and like very involved, like over the top to the point where they're continuously like asking and asking and, oh, don't do that, oh, you can't do this, or you can't lift that, or you can't do that. I never had any of that, and I felt really hard done by for not having that. But that one little bit during the book where Dr. Sarno said that they shouldn't do that, he heard. So that's just my little share. But yeah, so there are many situations where it's not only the person that's got the symptoms that's the one that's struggling, you know, you've got more than one people that's struggling in different ways. And the person with the symptoms, remember, they didn't choose, like, to be struggling. They, you know, it's not— No. Like they've done that on purpose. It's like, it's where they ended up, it's not their fault, and that person does deserve a whole lot of compassion. But I guess when you've got a husband like mine who is a bit of a— doesn't want to fuel it or feed it or whatever, and I never knew any of this stuff about until really late down the line when I tried to have conversations, and I finally got a little bit somewhere with the conversations. And by actually just kind of sharing how I was feeling, and one day I can remember him saying that he felt really hopeless and helpless, and that he did, and that it wasn't that he didn't believe me, he just felt like he couldn't do anything. And he actually, when I actually spoken to him about it, I thought, Oh my God, I didn't even have any compassion towards you feeling absolutely helpless, like you couldn't do anything to help. So, um, and it were a long way in before I even knew that because he wouldn't have openly shared that with me. Um, I kind of had to ask. Um, so yeah, it's, it's a bit of an interesting one and it's it's different for every individual circumstance, but at the end of the day, what can really happen, which is worth mentioning, is that resent— resent— I can't speak— resentment can begin to build, and it could be potentially— I'm just going to use random scenarios that are real, like, for example, My husband having to take on more of a role with shopping for a start, because there was a massive period of time where I just didn't go and do the food shopping and things like this. Maybe doing more of the household tasks and cooking and things like that. And it's just resentment can build up unintentionally. If partners are getting a bit feeling like nothing's going to improve and how many years is this going to go on for, and then if you're not communicating, because I think one of the big things is really being able to openly be honest and communicate about how you're feeling and I never really did that because I always felt really embarrassed or just like, um, I should have been better, I should— I shouldn't have been having this. Like, I always found it really hard, so I just pushed myself really hard to just keep doing as much as I could, um, and then I'd feel really guilty. I'd feel really guilty for Causing disturbed night's sleep night after night after night, being up and down and up and down. And when I actually look back and reflect on it, I'm actually really grateful that he stood it out for this long because we're now in 2026. And for a huge, huge— the majority of our marriage, realistically, because it's been 21 years next month that we've been married, He put up with me being awake most nights, getting in and out of cold showers, being up— just some of the stuff that I used to do just to deal with my symptoms was ridiculous. And I'm like, actually, now when I look back, I think, God, he deserves a medal. Really does. Because I think if it was the other way around, I'm not sure How compassionate I would have been able to, um, to be in hindsight. Just, um, I'd have probably ended up sleeping in a separate room, um, but he just somehow, even though he didn't ever show a lot of kindness or compassion, or he wasn't overly involved, and the softy-softy approach I never received, um, some people get a lot of that as well. In all honesty, when I think back, I don't know what I was expecting, but I was really relieved when I found out that the approach that was taken was probably the most helpful one that could have happened because it wasn't fueling it, or I had no other option but to To finally figure out that the answer wasn't from other people. It wasn't about anyone believing me, and it didn't matter whether he actually believed me or not. It really didn't matter. I just spent so long being desperate to be believed that I've had bad feelings towards My husband a lot. And now I'm a bit like, oops, he didn't deserve those bad feelings. And that didn't help me either, being well. Having the bad feelings about feeling that I should have had someone who were a bit more sensitive. And everything kept me in even more of a frustration. And frustration and wanting things to be different does not help when you're suffering with chronic symptoms. It actually is one of Dr. Schubiner's 7 Fs: fighting them, fixing them, trying to figure them out. Oh, I always get— I always forget, but there's 7 in total, and that was contributing towards that too. What else do I want to say about this? And it always does come back to communication. Because if you can have open discussions and not in the heat of a moment when you're angry or anything like that, without making assumptions— because I just made the assumptions that he weren't bothered or that he didn't believe me or whatever else. I made that assumption, which if I'd have just actually had the conversation, I could have known a lot sooner that it was because he just felt Really sad and really helpless and really wanted to be able to change things for me, but he didn't have the answers either. So there were no need for that if we could have just had a better, better communication with each other, and then there would have been maybe a bit less— We never had no massive conflicts or anything because we've just never really been like that naturally, but there were Awkward moments where, um, there'd be a very awkward silence because again everyone's really different and I've got a husband who doesn't really have much to say, he just goes very quiet if he feels like he can't solve a situation. So I know for others it can lead to quite a bit of conflict. And sadly, it can lead to some relationships parting. And also what I wanted to share is a big message of hope too, okay? Because I know for some people they do end up going their separate ways, some people end up staying together forever. I predict that for me and my husband, that we'll be together forever. Because we've been together for 26 years already, and like I say, he's stood by me throughout all of those years since 2008, and it's only been in the last couple of years that I've begun to get well. He stood with me all of that time. But I have met many, many people who have actually got well, even during a messy relationship, that regardless of whether there were chronic symptoms involved or not, it may have not been the right thing for that person to continue with. So for example, um, a question that I really like, because a lot of people when they do this sort of work, like research, and they start to learn about all of these things, if they're actually in an unhappy relationship, There's many people that think, they ask it a lot, do I need to leave my relationship to actually recover and get well? And the answer for many people is that no, they don't need to leave the relationship because there are many, many people that are fully recovering who are staying in relationships, but they're still recovering, and then later down the line they end up getting divorced after they've recovered. But a good question I'd say to ask yourself if you are in an awkward one where you're actually thinking, is this relationship, is this partner who I'm with, and there's whatever might be happening, they're resentful because they're having to take on a lot more of the childcare or the clean, I don't know, cleaning duties, whatever it might be, or if you've got so unwell that you can no longer work and no longer earn money and they're having to do a lot more. The real question about— to ask yourself, which is really helpful, is, if I was well, if I was 100% well— maybe there's no such thing as 100%— but if I was really well and I didn't have these symptoms, would I choose to stay in this relationship? Because that can really be more of a guide as to whether or not you need to leave the relationship or not. Like, I never once really questioned leaving my relationship because I had no reason to, and I never felt like the relationship was any contributor towards my symptoms. I would have never ever even thought it could be anything to do with my relationship. But what I did realize was that when I did have more time to communicate and talk more openly about— because I think Having been becoming parents and having young children and busy lifestyles, we didn't really have much time to talk to each other, if I'm honest. Like, there's probably loads of stuff that he probably didn't even know that what were going on inside my mind that I never shared. But during the last couple of years, I've got so much better as part of the recovery process about just being like, This is what I need and what I want, and it's not— for years and years and years, I always thought I needed to be the one that, I needed to be a great wife, I needed to work, be really good with the kids, make sure the house was everything, and all of that stuff, and I just Felt like I weren't cutting it, like I wasn't good enough, but he didn't know that because I never even had conversations, it was just all going on, and now that we talk more openly, I mean, in the beginning I did start booking, I made a joke about this because, or a while ago now, I was like, do I need to book a Microsoft Teams meeting with you? Do I need to book a Teams meeting with you? Like send him a link. Just joking. And I was like, right. And just in order to have more healthy conversations with each other, I did invite him to my office a few times to have conversations that were just the two of us, or, you know, going out for a walk together, whatever it might be. But yes, dependent on the scenario, all options are possible at the end of the day. There's people that are recovering When they're in relationships that don't end up working out. There's people that recover and then the relationship still decide to go separate ways, and there's people that stay together and make it through even when they've had the doubts at times where they're thinking, this, this ain't where I want to be, um, and then having a load of doubts. So there's so many scenarios. What else did I want to share about insights along the way? Okay, so here's another one. Okay, so it's like gratitude, actually, like, you know, when, if you have got a partner who is doing things for you, it's like just really showing that appreciation. And just that really like, thank you so much, like, um, it goes a long, long way, like recognizing the effort of each other. And if there is, um, what do I call this, like when you're growing apart and then there's no chemistry, no contact, because Part of my big struggles where I don't like— it's like receiving affection can be a challenge, a very big challenge, receiving affection. And if you've got a partner who likes to show affection and then somebody who's going through a health challenge that doesn't want to receive it, that caused a really Probably one of the biggest challenges that we had to go through, you could say. So for me, it was like that— how do you call it— like emotional distance where couples are like not connected anymore, and then having conversations about it. And just being completely honest, like, some people get a lot, you know, from having a hug, like, I'm not having a good day but just give me a hug kind of thing. And for me, I just kind of had to wait to feel more well to be able to receive that again. could say. But honestly, by going on there, learning more about symptoms and everything, it wasn't really anything special to do. It just kind of started to happen more naturally as I started to feel more well. That was just my experience with that, like the physical affection kind of things. And then it just sort of takes care of itself, you could say. But yeah, I've not really heard many people talk too much about it, so I just thought I'd have a little bit of time just to chat. And apologies if it's been rambled and all over the shop because today's been a mental crazy day. My brother's had an operation and we had a family round that I didn't know were coming, and then I literally just Literally just rushed back from the hula hoop group, and then there's literally— they weren't even ready to go yet, so I was just saying bye and everything. And my little niece and nephew are only 4 and 7, so we were playing on the pull-up bar, and then I was like, right, I'm gonna go do my Facebook Live now. So I've just sort of rocked up and, um, I've just shared from whatever comes up to my mind. So just don't feel so downhearted if other people don't behave or respond in a way that you think would be helpful, and because I was so downhearted about it for so long, I just used to think it was so rude That my own husband did not know anything about. And even when I was diagnosed with fibromyalgia, he does not know nothing about it. He don't— yeah, he's never even Googled it. He don't— he wouldn't have a clue what fibromyalgia is. He wouldn't have a clue what ADHD is. Um, he don't believe— I'm not sure what he thinks and doesn't think. But what I did realize was Why does it matter? It really doesn't matter what, what he thinks about what fibromyalgia, ADHD, other labels that I'd been given. I just let that one go, and especially when I realized that what Dr. Sarno said, I— it just came over me, this instant forgiveness towards him. of giving him a bit of a hard time for all that time when he stayed with me, and I just felt grateful. But that was my own journey really with the relationship stuff, and then with other people, there's all kinds of things. So I'd really encourage, for those that are thinking that it's destroyed their potential to have a— get a relationship, um, and that they can't possibly get back out there dating because the symptoms are going to spoil it or whatever. Because there are many situations also where, what I've come across, where, um, people have recovered even who didn't even know about this kind of thing, but they've found the love of their life, they've got into a relationship with A person, and on the back of that, all of a sudden, the nervous system's felt safe, they felt safe, they're in this lovely relationship, and some people have experienced massive improvement. My sister being a really great example, because when she, she'd been in previous relationships that had ended, that had not been healthy relationships, you could say. But then she's now in a relaxed, more healthy relationship, and she's so much better. Her symptoms have simmered down so much that for some people, I'd encourage, if you feel like you would like to meet new people, I know it might feel hard in the moment, but brave it up, brave it up, and don't rule yourself out, and don't say that I'm never going to meet anyone until I'm better, because meeting someone could be part of becoming better. That's possible too. Limitless potentials, anything's possible, because at the end of the day, Your thoughts, what's happening inside of you, your fears, your thoughts, your I'm not good enough, this might never happen, that might never happen. It ain't about the things outside of yourself, like it's an illusion if you think it's your partner that's the magic wand, it's an illusion, like it's nothing to do with anything that my husband did or didn't do or how he What he knew about my symptoms or what he didn't know and this and that. It was always an inside job from me on what I was thinking and what was going on inside of my own self, you know. So yeah, just learning more and more about this stuff and having a go at the different things, reinforcing the messages of safety to yourself, like Oh, it's actually okay that my partner is not over the top concerned and over the top checking and getting involved in wanting to find a solution. Or either way, if you have got someone who's overly caring and compassionate and over the top, then again, It's just about being, oh, okay, this is how that is, but what's more important, and always going to be more important, is what's going on inside your mind and your thoughts than what's happening outside, because that's where it happens. And that takes me back to the final note about when I learned about the 3 principles— mind, consciousness, and thought— and the Sydney Banks, um, that was kind of like one of the early things that I began to learn about that really helped me, because it really helped me to see that I'm creating my own experience based on the thoughts that I'm having, and that is then bringing my experience alive. So that was like in the early days, but there's been a lot more insight since then that things have all come together. So communication, sharing in a safe, open way, um, and obviously we'd never want anyone to stay in a dangerous situation. If you genuinely are in a legitimate dangerous domestic abusive then there is specialist help out there. I used to do that as well, uh, for a living, um, you know, safeguarding, um, children's safeguarding, adult safeguarding, like there's support there to get, there's a lot of really amazing help out there. So we wouldn't encourage to stay in a dangerous situation, but in general, um, we're all really different, we all have our different styles, And ultimately, it's not on how other people behave and what other people do and whether they believe us or not. When we can see that it doesn't matter, we'll just let them get on with their day and I'll do my thing, and it's an inside job, and I can be a lot kinder to myself, I can give myself compassion, kindness, I can be more gentle on myself. I can't make myself go out and, you're gonna go tomorrow and do a 25-mile 25-mile marathon, that's not a marathon, is it? But long run, like, none of that really needed to be a thing. So I'm gonna leave it there. So, um, wishing you all the, all the happiness and health in your relationships, and I hope that I've shared just one little thing that you might have heard that might be useful for you tonight. And thank you for being here. As always, I'll be back again next week. And then I think at some point I'm going on holiday for a few weeks in August, going on holiday for 19 nights to Orlando, so depending if I can figure out the time difference, then I'll still do a little bit of something while I'm on holiday. And have a lovely week everybody, and I'll see you all next week. Bye! Bye!