EPISODE 18: Navigating the Trail Together with Your Partner

ALYSIA: Welcome back. We are so excited to have our spouses on with us today. We want to hear a little bit about their experience being married to a partner that has autoimmune disease. So we're going to start out with a question for my husband, Joe. How has your understanding of my condition evolved over time?

JOE: That's a, an interesting question. Partially because, um, a little bit of background, uh, of, of me, uh, grew up in a small town in Wyoming, um, with a large family, I'm one of nine kids. Um, and we were a, what I always considered very healthy family. Um, it was, we, we didn't. I never had any experience with autoimmune, uh, issues or, or anything like that.

Um, and so. When we got married, um, Alysia hadn't been diagnosed, um, hadn't really, uh, started this journey, um, when we got married. And so, uh, it, it really, from the very beginning of the diagnosis and the struggle of trying to find what's, find out what's, what was wrong, um, was, was always a challenge for me, uh, because I grew up in this family where we didn't ever have to go through anything like that.

Um, and, and so over time it is, it's been easier for me to understand and, um, be patient, I guess. Uh, I think I'm more patient now than I was at the beginning, uh, mostly because I've been able to see this kind of evolution of the challenge. Over time, my, my understanding has really broadened, um, and, and I've, I've understood more of how difficult it can be, um, to, to live with this.

And on the flip side of that realization, um, I've become much more cognizant of my life, my lifestyle choices, the things I do. Despite the challenge that Alysia has gone through living through the, the condition, um, for me, it's been something that has been an eyeopening, uh, experience.

DOUG: I'm Doug. I'm Stacy's husband, and we started our autoimmune journey, trying to figure out why, you my wife was so sick. We couldn't figure it out. We would cut out certain things and it would kind of improve, but not really. And we went to how many doctors? At least 10.

STACY: Yeah, at least 10.

DOUG: And finally, um, Stacy put her foot down and said, give me a blood test for celiac. My insurance will cover it. Give me the test, and that was the first of many. Um, life changing diagnoses that we've had since we've been married, and it's an evolving thing. You have to take it one day at a time, one diagnosis at a time, learn what you can, and aggregate all that information together.

JOE: The fact that you had to do that, Stacy, is just mind boggling.

ALYSIA: Our spouses have been on the forefront of, um, Hearing our frustrations when we've been to doctors that have gaslit us or have ignored us or undermined, you know, like they're always the ones we come home to first and, and vent to, so they've heard all about it.

BECKY: Um, this is Becky, I was going to say Scott, actually Scott and I got married. I had already been diagnosed with celiac disease. After I'd had cancer, I had a lot of health problems. So he, he knew he was getting on the health problem wagon, I guess you could say, but, um, some of my bigger diagnoses, like my lupus and stuff happened after we were married.

So the question that I had for him, how do you cope with the uncertainty of my illnesses?

SCOTT: Well, I like that lead in that you gave me, because I have to admit, Becky and I, I guess one of those kind of key things about me, I can tell as I'm talking is, I, Becky is my second spouse. I'm a divorcee, and so, yeah, there was a time when I was on my own, I was a single father of three children.

And, uh, that said, when I met Becky, like she said, she was going through cancer treatment. And so you kind of figure that when you start dating a young lady that is going through cancer that maybe you're going to have some different bumps and bruises. I mean, remember, you know, one of our dates being like a 4th of July and seeing the fireworks from the hospital window, you kind of, you know, I kind of had a few hints going in that we're going to have some bumps along the way.

That said, I mean, you know, the question about guilt or frustration. I mean, in many ways. My wife, you know, she was, she handles a lot of the cooking, and so if anything, she spoils me rotten on that way. And, and so she's always made that really easy for us and she cooks and takes care of us really well, and I love a good home cooked meal, so, I've never really kind of felt some of those. I mean, I'd also admit that I grew up with, you know, if it slows down, you eat it. And so sometimes I've, I've definitely had some of those picky eater conversations over the years. And I think one of the things that as we've grown, you know, in any relationships grown, one of the stories that keeps coming to my mind is when we went to like a, a functional medicine doctor and we did an, uh, uh, elimination diet thing, right?

And I'll admit, I kind of went into it going, ah, yeah, whatever, you know, nothing big will come of this. And. you know, we go through this, eliminate a lot of stuff, start reintroducing stuff, and I'll tell this story or whatever. We get to black pepper, right? And my wife, you know, when you reintroduce things, you give a little bit. I'm like, okay, so I take a little bit of black pepper. We have up to this point, none of us reacted to anything in the reintroducing, and we do black pepper and I'm like, you know, that was a little, you know, that's a little strong, a little hot, you know, what's going on? Waited about 15 minutes and did another shot. About that point, it was like somebody took an ice pick and threw it through my forehead and I went, I think I'm having a reaction to food. And that was honestly one of the first times of my life that that had ever happened.

And then I think some of the reality of, of some of the stories come home when it's kind of like, Whoa, black pepper. Honestly, it was never one of my favorite things. But at the same time, when you start seeing some of the relationships and it's not just somebody else that you care about, but it's you and you start going, "Whoa, okay. I guess there's something more to these food sensitivities than I thought."

BECKY: Yeah, one of the things I was gonna say about that is, he was always, he was always enough of a gentleman, he, he confessed to me that, you know, we've been married for a few years, and he, he understood that gluten was a no go, because it actually damages your intestine, when you have celiac disease, he got that, but some of the other food intolerances, and, and things like that, that weren't full on, like, allergies where you get anaphylactic shock, he said, you know, I will admit that in the back of my mind I was one of those people that was like, "Oh people don't really do that. It's just things they don't want to eat, and so what he again was awesome when we did the elimination diet we were doing that mostly for me, um, to try and help with my lupus, and he said, "well, it's going to be easier for you to cook if you don't have to do multiple meals and whatever, and, and, uh, so I'll eat whatever you're eating. So he basically did the elimination diet with me for that. And that was how he personally discovered what it's like, um to, to have an intolerance to something.

SCOTT: Yeah.

JOE: Yeah. And I think that's a, that's an interesting kind of attack to, to the autoimmune condition, right. Is, uh, and, and I think we've done it a little bit differently in our house where, uh, Alysia actually, she makes usually two meals, um, because some of us are gluten or celiac and some of us aren't. Um, and so we have, you know, I think there's different ways to manage, um, an autoimmune, you know, Condition where you, where you have to do different things, right? I think, you know, I, I love, you know, Becky and Scott, how you guys attack it from the perspective of, you know, we're going to do it together. And, and if it's, if it's something that, that, you know, that we're going to go through the elimination diet together.

Um, whereas I think for us in our family, it's, it's different where we. With, with younger kids and, and, and we've got five of them. So there's a lot of us. Um, you know, it makes more sense for us to just do, uh, you know, where we, where we need to do a glutinous meal and a gluten free meal, um, and, and manage things that way.

So I think there's different ways that you can, can kind of go about that. Um, and, and kind of your, your question, Becky, about kind of the uncertainty, I think that's a big piece of getting over that uncertainty is developing a process that works in your life,

SCOTT: I was just going to have one of the things that's helped me a lot with just this journey or, or some of the illnesses. I mean, yeah, I commented that I've gone on some of the diets or whatever with Becky and I think food is a big element. Nonetheless, I'd also add, I think education. I think the more you learn about some of the stuff, the more you understand, the more you communicate. I mean, we've had some amazing conversations, my wife and I, over the years on these topics because nothing for nothing, we're all going to die at some point in time. I mean, we're all getting older. We all have weaknesses. We all recognize, you know, challenges that we have within our bodies. And I think, yes, autoimmune adds to it, but in some ways, it's, you know, very natural. It's very much a part of life. And the more we learn, the more that we're able to adapt and overcome.

I, like my wife says, I'll, I'll be the first one to admit, I'm not the biggest fan of surprises, but at the same time, I guess I've tried to learn, you know, sometimes going, Hey, you know, we're only going to plan for one or two activities and if health or things change. We're going to plan accordingly and we do what we can.

My wife also recognizes I'm not a big fan of crowds or whatever. And so when we're in crowds or whatever, and I have to step back or, you know, some of the sensory issues that I have, I mean, I don't like tight spaces. I mean, I like, you know, I need my quiet time. I'm very much an introverted person. She accepts that part of me, and sometimes she probably protects me more than I think, but you know, it's all a lot of give and take. And we've both learned and grown and I think our relationship is richer for some of the differences, and we're able to relate to more people and we're able to tell some stories and been able to help other people along that I don't think we would have been able to if our life didn't have some of the bumps.

STACY: I, I agree with you, Scott. I think that there's a lot of emotional, um, there's a lot to deal with emotionally when you have someone you love whose life has to change, but we're just, we're all as we get older, we all have those kind of emotional facing mortality moments. And it's just that when you have autoimmunity, you have them more often and sooner. And there's a lot more involved in that, but that's the emotional impact that I think that it has on us as people with autoimmunity, our spouses, as people who love someone with autoimmunity.

But I also think there's a lot of practical challenges that we have. Like we have to make sacrifices and compromises in our personal and professional life. Doug, what are some of the things you've had to sacrifice?

DOUG: Um, a lot of the things that I've had to. Give up is I love me some pizza. I love me a big, thick, juicy burger, you know, all sorts of gluten pasta, all that, um, that is pretty much out the window because I love my wife. I am not going to bring. a bunch of glutinous items into our home where we have a small kitchen.

Cross contamination would be a very, very real thing. So, yes, do I occasionally have a pizza or something when we're out eating, you know, like at a restaurant? Yes. At home, I'm gluten free. And it's not a choice I normally would have made, but I understand the health implications for my wife and I don't want to add that burden. I don't want to see her get more ill, because of a choice that I made.

STACY: And as a quick note here, I have very brittle celiac. Like all three of us have it, but mine is extremely brittle. So that means that even the tiniest amount that might just make someone feel a little crappy puts me down for a week. So it was a decision, and it's a huge sacrifice that Doug had to make.

And I say had to, because in my case, he had to, and not everyone has that kind of level. But for me, it was something that had to happen. And so it was a big sacrifice he had to make.

JOE: And just real quick, I know we've, we've all been focusing very much on the celiac side of the autoimmunity, but you know, I know Becky and Scott from, from your perspective, you know, you guys have been, you guys have had to give up things not, not specifically because of the celiac, but maybe because of some of the other autoimmunity issues that you're going through, you know, the, the, the farm and the animals and some of the things that you've, you've loved beyond the people in your life, some of your, some of your, your activities.

So I think it'd be interesting to hear from you, you, Scott, and also you, Becky, kind of how you. Dealt with some of those sacrifices of not being able to do the things that you want to do. Um, because of some of the, the other, other types of autoimmunity that you guys are dealing with.

BECKY: Well, I, I would say because of my lupus and my fibromyalgia, and I talked a little bit about this and when we did the, um, the episode where I was telling my story, but we moved to the farm that we're on about 11 years ago, um, because we wanted land and we wanted animals. And so it was, and we had it for a while before things got really bad. And so that was, that was, I would say a big sacrifice. I kind of chuckle, Scott likes the land more than some of the animals.

SCOTT: For me, giving up the animals hasn't been a big deal, cause she takes care of them. You know, mine has been, yeah, you know, I don't have to put up fences as much or whatever. So sometimes I'm like, oh, okay. You know, fewer animals is a good thing.

BECKY: Yeah. He did, he did all the heavy labor. I did all of the taking care of and enjoying the animals. So he got that part out of the way. So he probably benefited from that, even though it was a sacrifice, but I think the biggest, I would say from my perspective, and I would love to hear what Scott, Scott has to say for this, but I think one of the biggest sacrifices he's had to make is that I, um, the last year or two, my lupus and fibromyalgia have gotten bad enough that I went from working full time to then working part time to not even being able to hold a part time job because of some of the physical challenges that I have. And so he is our sole provider, basically at this point.

So I know that that has been a sacrifice. And he also does a lot of things like doing the dishes and the laundry for me on a regular basis. I mean, what would you say, sacrifice wise?

SCOTT: Well, it's interesting you bring that one up because I think in the old days, you had the husband, you know, always, you know, it was the sole provider, but I have to admit our relationship, there have been times when you've made more money than I have, and you were, you know, my Becky was making, you know, working more hours than I was.

And that said, I mean, you know, like. Becky points out, yeah, over the past, you know, several years seeing that, you that disappear and going, Oh, wow. Okay. Are we able to make enough? Are we able to provide and are we, you know, putting things aside and not going to lie sometimes, you know, finances, you know, and having those conversations of definitely, uh, you know, keep things exciting at moments, but at the same time, you know, I back up and I'm like, I guess I tried to always find the positive or the upside.

Yeah, we've made sure that we've tried different things and we've tried to figure out different possibilities and, yeah, it might be a sacrifice, but my wife, if anything, sometimes it's how do I slow her down? So, you know, maybe the reason why she has some of these diseases, and I joke about it at times, I'm like, "You know, dear, if you were a hundred percent, I think you would have killed me off first." So sometimes I jokingly say, you know, I'm, I'm glad that some of these things are slowing her down so that I can keep up with her.

STACY: I would say that, um, As far as comp as sacrifices go, that probably the biggest sacrifice I've made was not gluten, it was giving up teaching. That, that was a huge sacrifice for me. I love what I do. I love coaching teams and I have all kinds of other wonderful things I do, but it was, it was a blow and it was a blow, not just to me, but to Doug, because that was a lot of income that suddenly we no longer had.

ALYSIA: I don't think that the financial situation should be minimized. Um, I was very blessed to be a stay at home mom for many years and I went back to work and I can only handle part time and I went, I work in a school. I only worked four hours and those four hours take everything out of me. My power bar is drained. I get home and I am really lucky if I have anything left to make dinner for my family sometimes. Uh, and it's not like that every day. But it's, it's hard and, and I couldn't hold a full time job if I had to, I don't, I don't think I could.

Um, so our, our spouses really do have to make sacrifices when it comes to, um, finances and when it comes to energy.

SCOTT: But I'll never forget when Becky was doing the after school part time. And kind of looking at Becky after she'd been doing it, and I'm like, "Beck, I know that you love being with the kids. I know that you even love what you're doing, but your health is worth more than this." I mean, I know that it'll be hard for me to be the only person, but I would rather me work full time, you know, and at the same time have Becky focus on her health because I got tired of having her worn out all the time and having her so broke down and so stressed out.

And there's nothing quite like seeing your wife in tears because she's doing something that she loves or whatever. And you sitting there going, how do I support? And at the same time, protect her. I'm very thankful that I'm able to, you know, do okay to have the job that I do, and that Becky's able to not have to worry about the stresses of working.

DOUG: We've had the, how do I support you, honey conversation quite a lot. Um, cause it's like. I know you have no, I know you don't have any spoons left. I know your power bar is drained.

JOE: You know, I would encourage people to just jump in. If you know someone and love someone who is dealing with auto immunity, do something might be wrong, but at least you're doing something.

STACY: So, well, I, I'll quickly add in here that if I wouldn't eat many, many, many days of the week, I would not eat if Doug did not go in and start dinner and some days I can go and help him and others days I just have to let him do it, even if he's worked a full day, and the guilt that I feel because we talked about like the feelings of guilt and frustration for our spouses. I feel a lot of guilt that my wonderful husband works a full day of work and comes home and sometimes has to cook dinner so we can eat, because I just can't, and that's hard, so I appreciate his support and I appreciate his ability to communicate with me.

ALYSIA: That leads us into our next question, um, about communication and supporting. So how is it? How important is it to have that open communication within your relationship, within our relationship?

JOE: I'm sometimes a little concerned that we might have a little bit too open of communication in our relationship. We, early in our marriage, we kind of made a joint decision that we were going to be open. Um, And honest in all things with each other, but we don't...

ALYSIA: We do, we talk about all the things, nothing, nothing is off the table. Nothing is too taboo or too, whatever to talk about. We talk about all the things.

JOE: Well, and I think when it comes to specifically autoimmunity and dealing with, with the challenges that come along with it, you know, that open communication is so critical because it's not my body.

I don't know. I can, I can think I know I can, you know, I have, I feel like I have a pretty good intuition, but in the end I don't know. And, and so I have to have, in order for me to understand you, you know, it's got to be communicated to me because it's not, I don't, I don't feel it. And so that open communication is, is critical, and sometimes it can be scary because, you know, we we've talked about changing plans and surprises and, and, and activities that have to get. paused or canceled because of, of, you know, uh, different things, you know.

And, and that can be a scary thing to tell someone you love, "Hey, I know this was really important to you, but I just can't do it. I don't have the, I don't have the power bar to do it." And you have to go, okay, well that might hurt my, hurt my spouse, but I have to be honest enough with them to, to let them know that that's important.

BECKY: On the humorous side of that, though, if you're that honest with each other, one of the things because Scott is a little bit of an introvert. He will be open enough to say, "Hey, how are you feeling tonight? Cause I don't really want to go to this."

JOE: We had that conversation before...a couple of days ago.

DOUG: Um, I grew up with, my mother was an English teacher. So communication was a priority in my family. Yes. We're both very open. I have no filter because I have ADHD. There are times where I need to be bold and just spew everything out, and I don't because I'm afraid am I overstepping my bounds? That being said, um, communication is key in relationships in general. We built our entire relationship on open and honest communication, and that has actually been a really good support while going through this journey.

STACY: It, I think it's important when you have autoimmunity to know that your significant other is going to be able to hear the hard things you have to say, because we have a lot of hard things we have to say. And sometimes they involve things like, "I know that you were really excited about this, but I, I can't move. I have to stay here. So you're either going to have to go without me," which Doug hates to go anywhere without me. Um, that involves social kind of situations, you know, it's, it's hard and it's hard for me to have to send him without me, but I know it's what I have to do, but at least we can communicate about it.

SCOTT: That's where learning growing. I'd even say autoimmune causes some changes in your life. Like you say that I don't think anybody really planned for and went, Hey, you know, when I see myself as an adult, I'm going to see myself having all these food allergies or all these health issues, and you just kind of go, wow, how do I roll with this one? What am I supposed to learn from these activities? And. Having that communications in place so that you have somebody by your side. It's a priceless commodity. I know I love having my wife understand some of my quirks and maybe it's just one more and she lets me understand a few things more about her.

BECKY: So kind of a twist on everything. We've been talking about some of the challenges with autoimmunity. We would like you gentlemen to talk about what you feel are the positive aspects of caring for somebody in your life that has autoimmune disease.

SCOTT: Hey, you already touched on one of them. If I don't want to do something I can say she's sick. It's a great get out of jail card.

JOE: For me. Personally, one of the I won't say it's a positive aspect, but it's definitely something, I, I have been told that I'm not very introspective. I'm, I'm not the kind of person that's going to sit and spend, you know, even seconds, um, reflecting on how I feel or how I, how, you know, a certain situation is impacting me. I just, that's not who I am. Um, but the, the autoimmunity challenges that Alysia has gone through, um, has caused me to become more introspective and has caused me to take that time to stop and go, "okay, wait a minute, is going 90 miles an hour important in this situation?" And oftentimes the answer is no.

Oftentimes it's, it's, you know, it's keeping up with the Joneses, it's, you know, social pressures, it's, you know, work pressures, it's, it's, it's not things that really matter. Um, and, and I've learned in, I've learned through going through this adventure with Alysia, uh, up to this point that, you know, that's important sometimes to take a step back and go, "wait, is this really important?" Because if it's not, is it the thing I should be doing?

SCOTT: I think the problem solver in at least me, I always want to find a solution for things. And sometimes the solution, you know, they used to say the solution for the common cold is the common cold. It's true. Slow down, enjoy life, enjoy the moments because it's really easy to blow past things in life. It's really easy to take everything super serious and, and, and all that kind of stuff. But there's also something to be said about going, well, we're all people and each one of us has some unique differences and you know, we can relate. And there's the, the connection points that. I think sometimes we forget in, well, everybody's just like me. Everybody's, you know, doing this and, and they're better or whatever. And you're kind of like, you know, that's not always the case. Sometimes the case is, hey, we're all kind of in here struggling and we're trying to come up and do things the best that we can, and it's amazing how well blessed we are.

DOUG: Yeah. With me, um, the positive aspects is, are more along the lines of. It's given me the opportunity to step back because again, with my lack of focus with ADHD, I would just steamroll through things. I can't do that. I need to think about, slow down and think about, "Okay, if I do this, how is that going to affect Stacy? If I do that, how's that going to help us or hinder us moving forward?" And it's something that I never had in my life. And it is actually a really good thing to slow down, focus, and move forward in a deliberate fashion rather than as I did before I was diagnosed, and before she was diagnosed, where I would just kind of blunder forward.

ALYSIA: I was just going to say, so what I'm hearing from, from all three of you, this general theme and your answer is that it's caused you to, to slow down and, and, pay attention to the things that matter most, and enjoy life in, in a way that you can't do if you're speeding through it, right?

JOE: So to, to use an analogy that I think kind of fits here, right? My personality is I'm getting to the top of that mountain, and I'm going to be the first one to get to the top of that mountain. And I'm going 90 miles an hour up that mountain because the whole goal is to be the first one to the top of the mountain. And what Alysia's, you know, autoimmunity adventure has given me is every once in a while, we stop and sit down on the log and take in, take in the trees and, and enjoy the, the view of the valley. And, uh, it's not, my focus is not 90 miles an hour up the mountain to get to the top. Um, even though that's my personality. Um, it really is sometimes stop and smell the roses, and, and that's a good thing. Um, it's, it's not what comes natural to me, but it's a good thing.

ALYSIA: One thing I really think we should note that I know none of you guys will say, but I know all three of you have developed is a greater compassion for others. Um, when you see firsthand that when your, your spouse is suffering, and you care for them, uh, when others come into your life and you see that about them as well, if they are suffering, you, I know I've seen it, um, just more compassion, more compassion for others that are struggling in whatever way they're struggling.

STACY: So guys, to wrap things up, I want each of you to share what advice would you give to other partners who are in similar situations, because there are a lot of the people out there who have partners who just don't quite know how to tackle having a partner with autoimmunity.

ALYSIA: Especially if it's a new diagnosis, if you have like, like us, like Stacy and I had married for a few years, a number of years without any health issues. And we, I think all three of us ladies could say we were previously high energy people, goers and doers, and we were always on the move. And, um, that definitely was a, was a switch, right? There was a switch there.

STACY: What advice would you give Doug?

DOUG: I would. He focused on living in the moment and understanding each moment, living to the fullest and looking for ways to understand and help your spouse.

SCOTT: Hey, things are going to be different. It's okay. You know, that's probably where my humor kind of kicks in at times. And I think if, if you can learn to laugh and not take things too terribly serious.

JOE: I think the thing that I would, the piece of advice that I would give to someone who is, um, tn a similar situation, I think there's there's kind of two pieces of advice I would give.

The first piece of advice is, you know, like Scott said, be prepared for a lot of change. Things are going to be different. Go into that change with an open mind because, um, your partner is in a very uncertain space too. They, lots of times they don't know what the next step is either, and so to, to, to ask them what the next step is doesn't help. They don't know either. So you have to be this, in this change together and be prepared for that change.

Um, the, the second piece of advice I would give is something more kind of a overall relationship piece, but I think it really works in it with when it comes to autoimmunity to is, uh, be prepared to not be able to solve all of the problems. Um, sometimes problems don't have a solution. Sometimes they just have to be suffered through. Um, and, and that's just part of it. And, and that's part of life sometimes, but with autoimmunity, it comes more often and it sometimes come, comes harder. Uh, those, those challenges that can't be solved are bigger, and you just have to be okay with saying, you know what, this is the new normal. And, and whatever it is, we'll, we'll get through it. We'll figure it out together. Um, and in the end, we'll, we'll, we'll make it to the top of the mountain. And that's the important piece.

STACY: I agree. Well, thank you, gentlemen. It has been delightful sitting and chatting with all of us together. And I'm, I'm grateful for your insight, and I think the thing that is so amazing about this is that even though we all know each other, it is always interesting to see the things that are going on in other people's minds who have to deal with us, because we're in the thick of it every day. Every moment of every day, but you're with us. And it's good to have a moment to just see that not only are you with us in spirit, but you're, you're like very aware of what's going on.

And I guess as a closing thought, what I would say is this, it's really important, ladies and gentlemen, to remember that the changes that come with autoimmunity are things that your partner, it's going to change their life forever, okay? It's changing your life forever. It's gonna change their life forever as well. And so, we need to grant each other grace, we need to be kind, we need to be patient, and we need to just trust that if we do all of those things, that we'll be able to find the path together. And like Joe D said, we'll be able to get to the top of the mountain together. And hopefully in the process, we'll also be able to help each other to get there more effectively.

BECKY: We also hope that you will like, and subscribe and find us on autoimmuneadventures. com.

And most importantly, remember you're worthy of joy, and your disease does not define your life, you do.