EPISODE 23: Children of Parents with Autoimmune Disease

BECKY: Hi, so this week we're going to be talking with some of our kids about what it's like to have a parent with autoimmune disease. And I would like to introduce you to Kira. She's my middle daughter. She's the one who's going to be representing me this week.

KIRA: I'm Kira and I am 25. Becky married my dad when I was in fifth grade, and we've loved every second of it.  It's been good.

ALYSIA: And I have three of my five kids here with me. I've got my oldest.

KENZIE: Hey guys, I'm Kenzie. I am 23 and going to school in Idaho.

ALYSIA: And then I have my fourth and fifth.

TESSA: Hi, I'm Tessa. I'm 14 and in 8th grade.

LUCY: Hi, I'm Lucy. I'm 12 years old and I am in 7th grade.

ALYSIA: And just for the record, Tessa and Kenzie both have celiac like we do. So, they have a little bit of a taste of autoimmunity themselves.

BECKY: Okay, so Kira, I wanted to ask you, like, how do you feel that me having autoimmune disease affects you and our family? I came into the relationship with Dad. with some of my autoimmune issues, but mostly just celiac disease. I didn't have lupus and I didn't have fibromyalgia yet. So how do you feel like that affected you personally, and maybe the family as a whole?

KIRA: I think that it was definitely a bit of a rude awakening. I was like 11, I think. And obviously before then I had no experience with food allergies. I remember that was tough for us because we couldn't put the knife back into the butter anymore, and that was a huge thing for me.Then it took a lot of getting used to, just going from the transition, a regular mix everything up kind of house. And then now it was, we had to separate things and like make sure there wasn't cross contamination. But I think it honestly took me a while.

I know when you were diagnosed with lupus. That was a big deal, but at the same time, it didn't feel like a big deal to me, personally. When you first got diagnosed, it wasn't, I feel like the flare ups and everything weren't very big. It took me a minute to see, you know, like when you went out in the sun and got a rash and like things like that. And then I feel like it started to progress more, but honestly, I feel like you handled it like a champ.

And, uh, even though I know that that was like really difficult and hard for you and it's definitely taken a toll on your body, you were very good at being the coolest mom ever and going out for us and being there and it was hard for me to figure out how tough that was for you until recently.

BECKY: And along those lines, how do you feel now that you, like you've seen that unfortunately, my health has kind of gone downhill a bit in the last couple of years. How do you feel when you can tell I'm not feeling well, and I'm not able to maybe do the things that I want to go do with the family?

KIRA: It's definitely like obviously now I think that it's a lot more apparent and especially like our last cruise when we were planning excursions, and we couldn't plan ones that were out in the sun. I think that was when I really realized how tough it was for you to be outside. And so I thought that that was a bummer.

BECKY: So I know, like you said, sometimes there's things when I can't do things, it's probably frustrating or sad for you and you may not be comfortable necessarily coming to me about it. I already feel bad about not being able to do whatever the activity is, do you have someone, your siblings, a friend or whatever that you're comfortable talking to and just letting out your frustrations when things are kind of messed up because of autoimmunity?

KIRA: Genuinely, it doesn't, it's not a hard enough thing for me to feel like I need to vent frustrations about it.

I think that, I don't know, I feel like you always are there for me and you show up for me, and I know that you do it to the best of your abilities all the time. And so I don't really necessarily think that it's difficult for me to be upset about you not being there, but you're always there. Like you don't, maybe you can't be there physically, but like I know I can call you up and talk to you, or I think about when I was a kid and again I'm like back on the celiac - you would get like cross contaminated, and then you'd get this huge migraine and you'd go sit in your room in the dark with the lights off and an ice pack on your head. And I would come in and talk to you, because I was a little kid and then you would just like...and like dad would be like, "Hey, she needs a break. Get out."

And then you'd be like, "I want to talk to you too." And you just sit and talk to me. And so I feel like you still show up for me. So it's just like having that support and seeing you. And I know it's tough, and you need breaks and I get that for sure, but even then when I need you, you're there. So it's not something that's tough for me to have to navigate around.

BECKY: I love you, and I totally did not pay her to say that, by the way.

ALYSIA: Okay, so I wanted to ask my kids, specifically, I asked Lucy this earlier, and I was very impressed with her answer. Could you tell me, in your own words, what you think autoimmunity is?

LUCY: Earlier, when I was talking about autoimmune, it's kind of different conditions that your body has that makes it a little bit confused on what's good for you and what's not, I think.

ALYSIA: That's a pretty good definition. I think, right. I try because my kids have my blood in their veins. I try to educate them a little bit, at least on this kind of stuff. I don't want my autoimmunity to be like a huge deal in everybody's life. I just, it's something that we deal with, but it's not the biggest deal.

I don't like to talk about it too, too much. How does autoimmunity affect my behavior and my health? How have you guys noticed that?

KENZIE: I think one thing that I've noticed, especially like, as the oldest, I was able to kind of see your transition as you got more of your autoimmune issues and kind of see you kind of go through the trenches a little bit, and kind of see how your behavior changed.

I think, I think one really beautiful thing that came of it is you got a lot more focused on what was actually important and what was just fluff. And I think that was a really beautiful thing for me to see, especially going through, like, as a teenager, trying to figure out my own life and what really was important, it was really, really cool for me to be able to look at you and say, okay, because of her own little refiner's fire that she's going through, she's been able to pare down on all of these things that aren't actually important and been able to peel away the good and the better and focus on the best.

ALYSIA: Thank you. Wow. That was very generous. And I think it's similar to the interview we did with our spouses. The common theme we heard from them was this has caused us to slow down and take a look at our priorities and decide what is the most important and enjoy life a little bit more, I think.

KENZIE: And isn't that a beautiful gift?

ALYSIA: It is because a lot of people don't get that gift. It's a terrible gift to get, but it's also, it's also a blessing because you really do have to eliminate the fluff. You really, really do if your health is, is a struggle.

To Tessa and Lucy, what do you guys think? Well, what have you noticed in my behavior in regards to my autoimmunity, like how it affects me?

LUCY: You have been a lot like more tired. I feel like it affects energy levels quite a bit.

TESSA: We were talking about this earlier, and you said that most of your autoimmune issues started when me and Lucy were little. So, me personally, the way you act is just like the way you've acted my entire life. So I don't really see anything as that different.

ALYSIA: Yeah, I, that makes sense. Um, I think I've mentioned previously my older three kids got a very different mom in their younger years than my younger two kids got in their younger years. That's something I have to carry with me and that is hard for me. I showed up in the best way I could for all of my kids, but I do have a whole lot of mom guilt associated with that little fact about our family.

STACY: It dovetails very nicely into one of the things that dad told me. Because, like Kenzie, I had a very different father than you did, Alysia. It's interesting because it isn't until you and I get to talking about things that I realize that, and I know that Dad had guilt about it.

BECKY: I was gonna say similar to that, like, I was young, but I remember a dad that would, like, run and play tag with us. And, you know, as you were growing up, and his autoimmune issues got worse. We had a dad that was totally tapped out by the time he got home from work and would usually fall asleep while he was waiting for dinner to get ready.

ALYSIA: Yeah, I think that is something to keep in mind. If you are young with autoimmune disease now, keep that in mind. And just gradually, the change is going to happen whether you want it to or not. And just try to give yourself as much grace as possible. Because I was really unkind to myself. I still am unkind to myself, honestly, about it. But my kids are far more gracious with me than I am with myself. When I am not feeling well, what does, like, how does that affect you guys?

TESSA: We mostly have to, like, make dinner by ourselves. Like, I get that's not really a big thing. Just having to kind of take care of yourself for a bit while mom was resting. Making sure you get rest and food. I didn't really mind it. It didn't bother me that.

ALYSIA: Makes for very independent and intelligent children.

That is for sure. And I think that anything that we couldn't do on our own Dad was really, really good. I'm taking your spot.

ALYSIA: Yeah, he is. He's amazing and supportive and he picks up the slack wherever it needs to be picked up. But I do have a significant weight on my shoulders with the knowledge that my kids have had to age a little quicker than I would like them to age.

Because especially during Tessa and Lucy's early years, while I was trying to figure out what was wrong and trying to get a diagnosis and they were young when my other kids were that age, I was taking them to parks and play groups and we were doing little gymnastics classes and we were doing all kinds of stuff and arts and crafts and whatever.

I, I'd do it all. And Tessa and Lucy got very little of that. I had no power bar to do those things and it was hard. To not be able to do those things for my kids. So they said they didn't know any different because that's how things were. But I do remember a particularly difficult moment for me was it was Mother's Day time and Lucy was in kindergarten. She brought home a paper where you filled out a survey about your mom, and then you brought it home to give to your mom for Mother's Day and a cute little card with some artwork. And one of the questions on this, it was, you know, what's your mom's favorite flower? And one of them was, what's your mom's favorite thing to do? And Lucy had written "Sleep." Did you forget this, Lu?

LUCY: Honestly, I'm sorry for that. That was wild of little me.

ALYSIA: You were five. I was not...I was expecting nothing but honesty from a five year old, and it was not your fault. I wasn't hurt by what you said at all because it was, it was true. And to a degree, like I was in a real and granted guys keep in mind, I had five children, I had five young children. That's exhausting in itself. But then I was really just trying to find a diagnosis and figure out what was going on with me. And the fatigue was next level. And. When I saw that, I just, I, it really dawned on me how bad it had become.

I'm like, Oh my gosh, my kid thinks my favorite thing is sleep. I remember I was also suffering from depression at the time, and I remember making a conscious choice that I was going to quote, 'fake it till you make it.' Um, especially first thing in the morning when we get up and we're getting out the door to school and I'm feeding everybody breakfast and making sure everybody's dressed and the hair's brushed and the backpacks are packed and all of it. It's exhausting. It's really exhausting. First thing in the morning with five children, especially when you're in Minnesota and it's like, let's bundle everybody in your zippers and your coats and your mittens and your hats and your scarves and your boots and your like, it goes on and on. It's a lot. I told myself I was going to just paste on a happy face. Even though it was a struggle and I did and you know, 'fake it till you make it' is a thing, like you really can change your attitude. I was very blessed to be a stay-at-home mom. I was very blessed to have amazing children and a supportive husband. I realized that and yes, it was a struggle, but I had immense blessings through the whole thing.

Do you guys feel like you ever need somebody to talk to about your feelings or your frustrations, your experience, having a parent with autoimmune disease and the effects that has on you?

KENZIE: I completely concur with Kira's answer in that it has never been something that has caused me enough frustration to be a conscious thought in my brain. It's always just kind of been there. And that's just how life is. It just is. And I've never felt that it is detrimental to my quality of life. Or my relationships with anyone I love. So I haven't ever needed to.

ALYSIA: Good.

LUCY: I think that's really true. I've never found it frustrating enough to have to talk to somebody about it.

ALYSIA: Tessa, you had said earlier when I asked you this.

TESSA: I agree with them. It doesn't cause me any stress. But I feel like I trust you enough that if I did have any stress or anything about it, I would like come talk to you, or Dad, or Kenzie, or Will, one of them.

ALYSIA: Yeah, I hope I've made it clear. My kids can talk to me about anything. We're kind of a household where we talk about all the things. So that makes me happy to hear. You guys don't feel like you need outside help. So when it comes to supporting us parents with autoimmunity, I really struggle with this because I feel pretty strongly that children should not be responsible for making, they should never feel responsible for making their parent feel better or making their life easier.

And oftentimes in a flare, they do have to take on additional responsibility. And I try very hard to make it their own responsibilities, not my responsibilities, because that's not their job, they're children, and they need to be allowed to be children.

But what are some of the things that you, I mean, I'm, I could list the things I know you do, but I wanna hear what you guys do to show love and support for me, when I am not feeling well,

LUCY: Cleaning up around the house.

KENZIE: I love just making sure that everyone is taken care of. We're all pretty self-sufficient, but one of my favorite things to do when you are just down, out for the count is just kind of do a checkup on all the kids and be like, okay, how was school today? Have you done your homework? What about this? Let me follow up with that. Like kind of just low-key be in a managerial position, almost.

ALYSIA: She steps into the mother role very well.

KENZIE: Just Hey, what do you need help with? How can I support you? Like, okay, do you have any fun ideas for dinner time? Like let's make something fun out of this type thing and just kind of check up on everyone because we're all self sufficient, but it's been more fun if we're in it together.

ALYSIA: Yeah, I definitely remember Kenzie, like banding the siblings together to cook dinner a time or two when I was down and out,

TESSA: I remember when I was younger, I absolutely loved we were all home alone and you were the only person that was left because you would always like put on Disney, do something fun and make fun stuff for dinner.

KENZIE: She's referring to Kenzie, by the way, when Kenzie was in charge, when she would babysit her siblings.

LUCY: We also have a really fun time...

ALYSIA: Things that you guys do to take care of me when I don't feel good, or to take on your responsibilities when I don't feel good. What do you do to take care of yourself when I'm not feeling well?

TESSA: Recently, I've like kind of gotten into journaling and stuff like that. My way of self care is like, oh, I'll, like, get in the shower, and I'll take a nice shower, and I'll, like, do all my hair stuff, and I'll put my hair in a towel, and then I'll sit on my bed, and I'll turn on my heated blanket, and I'll just journal for, like, hours and hours and hours, and I write pages and pages of stuff.

And, I guess that's not necessarily just when you're not feeling well, but, like, I feel like that's a good way for me to not necessarily cope...

ALYSIA: Yeah, Cope.

TESSA: Sort through everything.

ALYSIA: Cope is a great word for that. Any other thoughts on that? What you do? I mean, you guys already mentioned that you get yourself food, and you get yourself ready, and you get yourself out the door to school, or you, you know, you get your homework done, things that you make it a little easier for me to not worry about that stuff.

KENZIE: One thing that I have found is you're like my best friend and so I talk to you about all of the things, and on days when you just have a lot on your plate and I don't want to hand you more things for you to think about it's been really beneficial for me to find other methods, kind of like Tessa was talking about, other methods of kind of putting my energy and my...

ALYSIA: Emotions?

KENZIE: Emotions somewhere whether it be a friend or a journal or prayer honestly has been really powerful for me there just finding a way to Still put my emotions out there and feel all the things and have connection without necessarily barging into your room and...

ALYSIA: Dumping...

KENZIE: ...and dumping when you're in the middle of a flare.

ALYSIA: I love dumping sessions for my kids, honestly, but yeah, I get it. Okay, so is there anything that you guys would want to ask me about being a parent while you're managing an autoimmune disease?

LUCY: What is it like having kids when you're sick?

ALYSIA: Well, I discussed that pretty well earlier, earlier, I think. It's a lot of mom guilt and I didn't know all the things that were wrong with me until I was pregnant with my last child. I think that was a blessing because I got all of my children and had I been sick previous to that, it definitely would have affected our family planning situation. That last pregnancy was was really difficult.

That was I had a lot of issues, didn't have a diagnosis at that point. And so it was really hard. The other thing I would say is difficult is I worry a lot. If I'm handling things the best way, try to be open and honest about what I'm going through. But I also try, like I said earlier, not to make it about my disease all the time, because that's not.

What my life is about. That's just a thing I have to deal with. I don't want it to be a huge focus in my kid's life, but I am passionate about advocacy. I'm passionate about sharing the knowledge about it. It's something that I've had years of research and years of dealing with, and I hate for anybody to struggle with that.

And so I'm big on talking about it. So I hope that I'm doing that the right way and not pushing that all in their face. And I also worry that my kids have my genes. They have my blood running through their veins. And so Kenzie and Tessa already have celiac, and I just hope that I am not setting a bad example.

I know sometimes I don't make the best choices, especially with diet and I could improve in other areas, but I want to set a good example so that they know if they take care of their bodies that they can avoid being ill.

KENZIE: You've done a really good job about, like, explaining that and talking that through with us. I think that's a really good mentality to have.

BECKY: I don't know, I just think that's really important. I was gonna just say, obviously, because I'm the stepmom, Kira doesn't have my genetics. But one of the things that I've seen with her, as well as my other two kids, is that by having me as a parent with autoimmune disease, they have actually been more compassionate to other people that have similar or other conditions And they've even been able to do things like Kira said, you know, when I first married Scott the food allergy thing was really new for her. Her boyfriend had major food allergies and she adjusted without any problem because of it. She's had some really good friends and my other kids have too, because they know and understand food allergies - they can actually make them treats or do nice things for them maybe other people wouldn't understand, and I guess my question to your girls, Alysia, is have they found , kind of like Kenzie was saying, she found that it kind of helps her slow down. Does she feel like she can better relate to and understand other people that maybe have similar problems because of the experience they've had with you?

LUCY: I have a friend with a peanut allergy and I feel like it's just been a lot easier to just make sure check through the ingredients and make sure there's no cross contamination, making sure nobody's touched peanuts, and then touched the lid of something and it was like what you were something you were saying It's been a lot easier to adjust to people having allergies because I know what it's like to have to adjust to that type thing.

TESSA: There's a few girls at my school who also have celiac disease and I always see them in the lunch line when I'm going to get my food from the lunch lady. Recently one of them started sitting at my table. Because she was having problems with her friends or something, and she's decided to sit next to me because she knew, because I had talked to her about celiac disease and stuff.

And she decided to talk to me, and I think that's just so sweet. Because she's just like the sweetest girl.

ALYSIA: It's called trauma bonding. I mean, sort of.

STACY: We know what we're saying because the three of us trauma bond all the time.

ALYSIA: Each of us have trauma bonded with other friends. People I didn't know and would not have a friendship with, had it not started with sharing a really good piece of gluten free bread. It happens. Kenzie, what were your thoughts?

KENZIE: I think that it has given me a very unique kind of empathy. I think for people who struggle with physical health issues, I think that it's one thing to experience it yourself, but to see your mom who has given her whole life to you, struggle with the most basic of tasks, getting out of bed and making dinner and things that, like most people just take for granted, it hits, it hits a very tender place in your heart. And I think it has given me a really unique kind of empathy for people of all sorts who have all kinds of physical illnesses or disabilities or even mental health issues, because those are also debilitating. It has, like Tessa was saying, given opportunities to connect, a new sort of awareness.

And I think it's all around just made me a more compassionate person. I think because I can look at someone and say, I have no idea what it's like to be you, but I know what it's like to be me. And I've seen kind of what it's like to be my mom, and that's hard enough. So I'm just going to give you an extra bit of grace.

And I find that it helps a lot with any sort of judgment or complaining or, uh, selfishness that I'm in the midst of. It helps me to kind of get out of myself. And it reminds me of that phrase, uh, 'everyone has a battle that you have no idea about that they're fighting' or however that one goes. And just that idea of you want them to give you grace and you better give grace back.

TESSA: Um, and I feel like it also gives other people awareness because at my lunch table or when I asked someone if I can have a drink of their water, if I asked one of my friends, they're like, no, you can't. I've I've had gluten today. Like, I'm gonna get you sick. Like, you can't drink out of it. I've had gluten today.

And I just think me teaching them About my autoimmune issue is going to give them more knowledge to deal with people with stuff like that in the future. Personally, I'm not that concerned about drinking out of their water bottle or anything, but it's just the fact that they're so insistent and they're like, no, I don't want to get you sick.

ALYSIA: Yeah. I think that's true. Spreading awareness is hugely beneficial for not just us that are struggling. Some days we suffer, but for the most part, it's just, it's more of a struggle. Yes, that's beneficial for us that struggle. However, it is beneficial to spread awareness to anybody and everybody because of how prevalent these issues are in society.

KENZIE: I also think it is having specifically dietary issues is how it mainly presents for me, but it is such a spectacular opportunity to get humble and let other people serve me. I really, really, really hate advocating for myself. I will usually just figure it out. I don't want to ask the waiter for anything.

If I go over to other people's houses, I don't want to do anything. I don't want to have to make them do any extra work. I went and spent Thanksgiving break with my boyfriend's extended family and was staunchly on team, 'I will starve before I ask for help,' which is a stupid team to be on. Don't be on that team.

ALYSIA: Yes. I thought we talked about this before you went and I was like, let's talk about advocacy. Let's talk about doing it kindly.

STACY: People that are feeding you, they want you to be well.

KENZIE: And so that's. I went in with the, I'm going to have to get humble and ask questions and then got there and didn't want to ask any questions.

And my sweet boyfriend was so good about it. And he followed up with every single person, his grandma and his mom, his aunts, everyone that made any food, he would ask what was in it. He would double check, triple check. People knew before I walked in the door, sometimes the first thing they said to me was, "Oh, hi, I'm so and so, by the way, this dish that I made, I triple checked three times, it's gluten free." And it was just like the sweetest act of kindness. Yes, it was so sweet. And what an opportunity to be served and to be shown love. And I think that because of my disease, and even though I don't like it, it gives other people an opportunity to serve and to grow uplifted that way.

STACY: Holy cow. He's a keeper.

KENZIE: I know!

STACY: That is how I knew that Doug was the right guy is that he advocated for me, and I don't struggle with advocacy. That is not one of my struggles, but it was embarrassing.

ALYSIA: Right? You have those days where you don't want to speak up. If you're at a restaurant, you don't want to be that one that has to be like, "Oh, I'm so sorry I can't eat that," because you're just so exhausted already.

STACY: And the idea of having to fight for your right to eat food is just exhausting.

BECKY: But when you have spouses and children and boyfriends, girlfriends, siblings, you know, whatever, anybody that loves you, friends, just whoever that helped advocate for you. And this is why like Alysia was saying, it's important to let people know because life gets easier when you're not just advocating for yourself, but the people that surround you that love you and know you also help advocate for you.

ALYSIA: So one last quick question for you guys. I kind of asked what you had learned about autoimmune disease, but do you understand going forward that you might have similar issues in your life? And do you know the things...have I taught you the things that you can do to avoid those issues or to deal with them when they come?

LUCY: If they come I feel like if they came I'd be all right with Dealing with them like that might just be me You've taught me enough about just bouncing back and just getting right back up making sure you're staying connected with the people you love Keeping a good man mentality and just having a good attitude about it.

TESSA: I already have an autoimmune disease But I feel like I understand that in the future because you're my mom, I might have more. A way to deal with it is recently you've taught me a lot about being conscious about what you're eating and stuff like that because I feel like food is going to be, well, it is so important and choosing the right foods that can fuel your body and benefit your body will make dealing with autoimmune disease not easy, but easier. Kind of like what she said with the food thing. Cross contamination.

ALYSIA: Yeah, they hear about that a lot. As Kira was saying, combining households is, I mean, we never had to combine two households, but we have people that are celiac and people that are not, and we're not a completely gluten free household. My kids know not to, not to contaminate things. So, Kenz, what thoughts do you have on that?

KENZIE: I have gained appreciation for the kind of basic tier one strategies of, like these big six that you guys are talking about. Like healthy diet, exercising, taking care of your sleep schedule. Am I good at it? Not yet, but it's a journey, but it's a journey and I have gained a very distinct appreciation for focusing on the foundational principles rather than on the offshoots.

Oh, I need to do specifically this one ab workout or oh, this one food is going to help me do this, that or the other. Instead focusing on building good habits. And then once those are solid, then you can branch out, focus on the trunk of the tree, focus on the roots, and then your branches will grow and you can stretch out and you can get more into the little niche things that can be beneficial to you, but without a good foundation of good sleep, good food, good exercise not much else is going to benefit you in the long run. .

ALYSIA: So I just want to thank my girls for coming on and sharing their thoughts. I know that it's not always easy growing up in a household where you're dealing with all the stuff that you deal with because of my issues. I try to have it make as little impact on you as possible, but I know my kids see all the bottles of pills on my dresser. And I know my kids see all the little doodads that I buy to try and help me feel better. And they've seen all the things that I've tried. I have books on the shelf. They know that I'm trying. What I really hope I instill in them is that it is a journey. You've always got more to learn and you always can improve, but that doesn't mean you shouldn't love yourself where you are right now.

Thank you for joining us, ladies!

STACY: We're so happy that you could come and join us today and that you got a chance to hear from my sister's kids who are some of my favorite people in the world. Please join us at autoimmuneadventures. com.

Remember, you are worthy of joy. Your disease does not define your life. You do.