Parenting with Chronic Illness
Kara Wada, MD: Welcome back everyone, and a big welcome to our new listeners.
I am so excited today to welcome Mariah Leach. She is a writer, a patient advocate, and a fellow mama of three. She lives with rheumatoid arthritis and after learning firsthand the challenges of facing pregnancy and motherhood with chronic illness, Mariah has become passionate about supporting women with chronic illnesses who are or want to become mothers.
She launched Mamas Facing Forward, a website and support group for moms and moms to be with chronic illness in 2015. If I only would've known then, I was pregnant and my first is seven was born in 2015. What an amazing resource you have and thank you so much for joining us today. I am so excited to be connecting and to talk.
Mariah Leach: I'm happy to be here.
Kara Wada, MD: Would you mind sharing a little bit more about your story how you came to be doing the work you're doing?
Mariah Leach: Sure. So I was diagnosed with rheumatoid arthritis when I was 25 years old. At the time I was in the middle of a dual degree program at the University of Colorado. I was in law school and also working on a master's in environmental policy.
At the time I didn't really accept my diagnosis and how life changing it would be for me. I just wanted to power on through which I'm sure you can imagine how that went.
Kara Wada, MD: That's something that we hear very commonly in folks that are in law school, medical school, graduate programs. "You just keep on."
Mariah Leach: I kept on until I couldn't and then I took a semester off and got my health a little more under control and I did finish my degrees. But then I got to the end of that and I thought about what I wanted to do with my life.
I knew I wanted to start a family was really important goal of mine and it came to me that starting a law career and starting a family at the same time were just not gonna happen while I was managing this disease.
So I decided to focus on starting my family and when I started looking for resources, pregnancy and autoimmune arthritis, it just didn't exist back then. My oldest is 10, and so this is a decade ago, it didn't exist. Also there wasn't as much social media, so I didn't know how to go about finding anybody to talk to, and I just felt alone and unsupported and I just didn't want other women to have to go through that by themselves.
So I originally started Mama's Facing Forward as a Facebook group and today that Facebook group continues to grow. We've got moms and moms-to-be from all over the world and it's an awesome place to like connect with other people who understand what you're going through and like it's a great hive mind for troubleshooting. Cuz parenting with a chronic illness has some pretty unique challenges. So it's a great place to troubleshoot and figure out how to be the best parent you can be while living with a chronic illness.
Then a couple years later, I launched mamasfacingforward.com, which is was my attempt to collect all the resources that do exist on pregnancy and parenting with chronic illness and put them all in one place then I work to try to fill in the gaps by creating my own resources in places where I think they're missing. That's a little bit about Mama's Facing Forward. I'm so excited to what it's grown into today.
You're not the first person to say they wish they had found it sooner, but I have lots of people who even as it's been a resource for me as I started it prior to my third pregnancy. It was the support to me through my third pregnancy as well.
So I both, gain and give and it's a lot of fun.
Kara Wada, MD: A good portion of folks who are listening are those who are living with the challenges of chronic illness, but not everyone.
What are some of the recurrent things that you'll hear or that you've experienced in challenges that have come up for you or those in the group?
Mariah Leach: I think that an overarching theme is parenting.
When you're either in pain or dealing with kind of a level of fatigue, and of course all parents deal with pain and fatigue and lack of rest and all of that to a certain extent, the stuff we talk about is applicable to all parents.
There's another level of it if you're dealing with some sort of chronic illness. Then the thing that comes up a lot when you're talking about pregnancy or breastfeeding would be medication compatibility and how do you treat your condition, whatever it is, while also having a safe pregnancy if you wanna breastfeed, nourishing your baby safely. There's a lot of choices that kind of intersect between treating your illness and becoming a parent.
Kara Wada, MD: Absolutely. And I encountered this with my third pregnancy. I've talked a little bit that, in hindsight, I almost certainly probably had Sjogren's with my first two kiddos and thankfully they've been pretty healthy.
But going into even thinking about, my husband and I had talked and thought about having a third child before the diagnosis and that diagnosis brought up this question of " Okay, what are the risks? How does this change the discussion, the equation? Am I putting a potential baby at increased risk?"
Some of these very personal discussions that every prospective parent is gonna have to think about in their journey and then they just keep coming up.
Mariah Leach: Then there's the proportion, for some people it happens on the other side, they've already become parents and then they get diagnosed with something and that's obviously not what they were picturing.
I guess what I have learned, life is almost never what you were picturing. You have to be able to adapt. But it's a process to figure out how to adapt to this and also juggling being a parent at the same time. So I think wherever you are in that journey, like it's helpful to talk to people who have been there because then you realize that you're not fighting, you're not dealing with it alone.
Kara Wada, MD: Yeah. I think that is so powerful. That isolation that we feel sometimes when we are in these situations that are really, life changing, scary, what's so powerful is that realization that you aren't alone.
Mariah Leach: Yeah.
Kara Wada, MD: I think that's what's so powerful about the community that you've built.
Mariah Leach: I'm glad that it exists because when I first became a mom, I had several close friends who had babies all at the same time. So there we were going through all the new mom stuff together, but I was going through stuff that they had no idea how to support me through.
Luckily the data has improved greatly since then, but I was, for example, having to decide do I wanna treat my ra or do I wanna breastfeed my baby? Luckily, that's not something you have to decide quite as often anymore as there are starting to be safer medications, but things like that or how is he safe when I'm holding him because my wrists are hurting today and am I gonna drop him? Is he safe? What do I do if I can't navigate his baby tiny clothes because my hands are flaring? Things like that I just had no one to talk to.
Kara Wada, MD: Changing their diapers as they get wiggly.
Mariah Leach: 1 billion times a day.
Kara Wada, MD: Yeah. I'm just thinking now my 14 month old, it is like a wrestling match that requires, when possible for sets, four hands, four functioning hand, because he's just all over the place.
Mariah Leach: Then the issues keep changing as the kids keep changing. I think now I'm getting to a point where my kids are older, they're starting to understand that what mommy has some health issues and what does that mean? How do they deal with the anxiety that causes and how do I balance being honest with them, with maybe telling them too much and scaring them? It's always an evolving conversation.
Kara Wada, MD: Yeah. We had we as a community experienced an unexpected loss of a friend, fellow parent, and so the kids knowing that mommy has health issues, that added to those questions that I think they had and naturally would've had given the circumstances.
But it is uncovering new cans of worms with each little just when we think it's getting a little easier than different challenges that come along.
Mariah Leach: Which to me is why it's helpful to have a community to fall back on, to be like, oh, now there's this new thing. What do I do now?
Kara Wada, MD: Yeah. I think the other thing that I grappled with so much, and I feel like I'm in a little better place now, but is there something that I did wrong that so my middle kiddo ended up with egg allergy and knowing some things about the immune system, I start to ask did I do something? Did I cause this? How can I minimize the risk of my kids developing something that I have. That I have gone on to be diagnosed with all those should'ves, could'ves would've.
Just trying to remember like we do the best we can with the knowledge we have and that's what we have.
Mariah Leach: I hear that sort of thing a lot from the members of our community who aren't moms or parents yet. They have concerns about, " Am I gonna have a baby who is more likely to develop some kind of autoimmune issue?" I think, depending on what your diagnosis is, the answer is maybe. But the way I think about it is that like my life is still valuable and wonderful, even though I'm living with this illness.
While I would never wish it on my children, it can happen to anyone at any time. It happened to me when I was a completely active 25 year old. It can happen.
But if it happens to my kids I will know how to advocate for them to get them treatments quickly and get it straightened out as quickly as possible. So they will have a better experience then I did because I'll be there for them. That's what I tell people who are considering parenthood is, if it's important to you, I don't think having a chronic illness is a reason to give it.
Kara Wada, MD: Totally, totally agree.
Mariah Leach: Of course if it's something that really concerns you, there are other options for becoming a parent as well.
Kara Wada, MD: Oh, absolutely. Yeah, that's so true. Would you mind sharing some of the resources available on Mama's Facing Forward? What sorts of things will folks find there if they haven't visited your site?
Mariah Leach: Sure. Basically you'll find resources there for every stage of parenting, whether you're just considering and you wanna figure out questions like these genetic questions or questions about medication.
Obviously, I am not a doctor, so I don't provide medical advice, but I can direct you to places that give really great information. Like Mother to Baby, for example, is a really great place to learn about medication exposure for pregnancy and breastfeeding.
There's planning resources. Resources based on my experience and contributed by other members of the chronic illness community about being pregnant with a chronic illness, about bringing home a new baby. I have articles from OTs telling you like how to care for children without hurting yourself.
If you have a physical chronic illness like like rheumatoid arthritis, and then it goes through to providing more resources for as your kids get older. Here's 30 ideas for what to do with your toddler if you're not feeling well today. I will say that there's definitely gaps in there.
My kids are only getting to the big kids stage now, so that's an area where I need to grow the resources. I don't have as much information up there as I would like, as anything basically about adoption because I need to connect with some people who could provide that insight. I have this whole list of places where I'd like to expand it.
Yeah. I don't have anything for dads. I focus on moms just because that's my lived experience, so I understand that situation. There are dads with chronic illnesses too, and granted some of the parenting information would be relevant whether you're a mom or a dad, but I'm sure there's some specific dad things that would be good.
So I have this whole list of places where I'd like to continue growing the website, and the idea is for it to be, a one-stop shop where it's if I have questions about pregnancy or parenting with chronic illness, you can come to the website and find hopefully what you're looking for or a direction to go in at least.
Kara Wada, MD: I think that's amazing. Call to action to our listeners too. If you have personal experience, expertise, or things that maybe fall under those categories you listed, then we'll certainly have all of your contact information in the show notes this is this is how we learn and spread the word about these amazing resources that are out there as trying to lift each other up.
Mariah Leach: And I think, there are people who are looking to connect. If you have those experiences and you're willing to share them, it can be really powerful for others who are going through the same thing.
Kara Wada, MD: Absolutely. When I was diagnosed when my middle, who's now four, was about nine months. I was still nursing her and so certainly had all these questions you're talking about. Was I going to still be able to nurse her cuz I have really, mostly enjoyed my breastfeeding relationships with my little one mostly.
Recently had my first and ,hopefully, only bout of mastitis, and that I would not wish upon my worst enemy.
Mariah Leach: Yeah, that is the worst.
Kara Wada, MD: But ended up I had a and actually a really significant flares about five-six months after I was diagnosed. My liver got incredibly angry and we were talking about bigger gun meds and somehow avoided them.
But that I was able to nurse Josie until I got pregnant with Ollie. She was like two and a half and just didn't wanna stop. I think it's helpful and I think that's something that I would just say there are increasingly more physicians who, especially, and I'll say not always, but especially female physicians who feel really passionately about helping get rid of some of the myths and misperceptions there are about when you need to pump and dump. Or some of the safety in breastfeeding for a really long time.
It was this carte blanche like on anything like pump and dump without taking into consideration that recommendation has some significant consequences, especially if you're a mama who's already struggling to make enough milk for their baby and so there there is a lot of us in a community called doctor milk that are trying to bring kind of evidence-based medicine to the forefront using resources, like you mentioned, and there's apps called like LactMed and other things to feel empowered to push back a little if someone tells you that advice and say, "Hey, Are those actual recommendations or is that just what you tell everyone?"
Mariah Leach: I also think if whenever we're talking about breastfeeding that it's important to always mention that breastfeeding is only if you want to, and absolutely that's what works for you and your baby cause certainly a significant, discussion about breastfeeding seems to come with a lot of pressure sometimes and sometimes it isn't what a mom wants.
Or even if it is what a mom wants, sometimes it's not what they're able to do, especially if you know you're dealing with a chronic illness.
In my personal experience, again longer ago when there was less data about medications, I was basically advised to stop breastfeeding so that I could treat my arthritis.
Then even later with my third pregnancy, when there was data and I was on a safe treatment, you mentioned mastitis, since the medications I take to treat my ra suppress my immune system, I was getting repeat mastitis.
Kara Wada, MD: Oh no.
Mariah Leach: Like over and over again to the point where it was making it very difficult for me to parent not only take care of my baby, but also my other two kids.
That I made the decision to stop breastfeeding in about eight months because it wasn't sustainable. So I think, whenever you talk about breastfeeding, if you want to breastfeed, there's some amazing resources out there to help you navigate your own illness, your own health considerations, and what's safe for the baby.
If you don't wanna breastfeed or breastfeeding is getting to a point where it's not practical anymore, that's fine too. No one asks my 10 year old if he was breastfed or not.
Kara Wada, MD: And my 14 month old, he's still eating stuff off the floor.
Mariah Leach: Especially with your first baby, it's a really, I struggled with that a lot.
It's a really easy thing to get lost in because when they're tiny that's basically your only job as a parent is like feeding them and keeping them clean. It takes some time to realize that there's so much more to motherhood than how you feed your baby. So you gotta take yourself into consideration there. That's something that kind of gets left out sometimes in the talk about breastfeeding, it's what's good for the mom matters too. Mental health and physical health matters.
Kara Wada, MD: What an amazing time that we live in that we have, and vast majority listening I'm sure of folks listening live in a place also where you have, and we have access to safe and nutritious alternatives.
Mariah Leach: Right. Not so much recently with which whatever was going on with the formula but generally speaking.
Kara Wada, MD: Generally speaking, We are in a much better place than maybe our great grandmas would've been.
Mariah Leach: Yeah, I think it's important to recognize that you always have options and that the health of mom is just as important and taking care of yourself, is taking care of your family or your baby because your family's not gonna function without you.
Kara Wada, MD: Yes. It's oversight at this point, but you really cannot pour from an empty cup.
Mariah Leach: That's my favorite one too. Yeah.
Kara Wada, MD: Both my sister and I, somehow I don't know how no one else in our family is in medicine, we both ended up as physicians. We both were bottle-fed our whole childhood. There's nothing, you can do whatever.
Mariah Leach: Yeah. And think that's an important conversation.
On the flip side, it's okay to mourn if it doesn't turn out the way you want it to.
Kara Wada, MD: Oh, absolutely.
Mariah Leach: I was devastated with my first when I stopped. I clawed my way to three months breastfeeding him. But at that point, my body was in such bad shape that I couldn't pick him up. I couldn't take care of him, and that wasn't sustainable. It was okay to feel sad about it. That it wasn't the experience I wanted. I envisioned myself nursing until he was two and so it's okay. Life throws stuff at you sometimes and I wish at the time that I had people to talk to. To tell me, it's okay. Tell me they had been there. Mostly, especially where I live in Boulder, Colorado. It's the Crunchiest place ever.
The first time I took out a bottle of formula in public, I was like searching around. I felt like people were watching me. There's that pressure. So it's helpful to have people to tell you that it's okay.
Kara Wada, MD: I don't know why I thought of this, but that Ben Stiller movie with Al Pacino, where they have the...
Mariah Leach: The dad is nursing, or the grandfather..
Kara Wada, MD: The dad is trying to nurse his made this invention where the dad can nurse and..
Mariah Leach: Wouldn't it be nice if they contribute?
Kara Wada, MD: But like that can get in years..
Mariah Leach: But that can be a good, maybe not with the whole breast contraption, but having dad do some feeds can be a good reason to,
Kara Wada, MD: Oh my gosh.
Mariah Leach: You need extra rest. You're trying to recover whether you're have chronic illness or not It's good for the dad to do some bonding as well.
And breastfeeding isn't all or nothing, you can go somewhere in between breastfeeding and formula feeding there. There's lots of options. Let dad do a couple of those 3:00 AM feeding so you can sleep through the night.
Kara Wada, MD: That's no, honestly. That was one of the big changes in me and my husband's relationship and things with our third kiddo. Having this knowledge and realization that for my Sjogren's and for my mental health, I really needed at least three to four hour chunk of sleep. And so we made some adjustments in that way of, " Okay, who's taking what shift."
I think between that and working with my rheumatologist and some other things like it made all the difference in the world for how that postpartum experience went compared to prior. It also helped that I knew that in prior instances I probably had some untreated postpartum depression and anxiety and so I talked with my docs and I stayed on meds through the pregnancy, and still am on some and that's okay.
Mariah Leach: That's another area where I have some resources and would like to continue growing them is that if you're living with a chronic illness, it impacts your partner as well and it impacts your relationship. That's another thing that you need to figure out how to navigate and how to communicate about.
The way you parent might be different than the way other people parent, so it's something you need to discuss. Having resources to help you figure that out with your partner is also good.
Kara Wada, MD: Absolutely. Realizing that relationships will evolve and change over this.
Mariah Leach: The theme: Life doesn't necessarily go the way you picture.
But you can find a way to make it good no matter what the circumstances are.
Kara Wada, MD: Yeah. So if folks want to check out your website and connect with you, what are the best ways to find you? We'll make sure to list all of these as well.
Mariah Leach: So the website is www.mamasfacingforward.com and we have an Instagram account where we share our resources there and try to keep it fun and then on Facebook we have a private group that is open to moms and moms-to-be anyone who identifies with having a chronic illness. I would say the majority of the people in the group are living with some kind of autoimmune condition cuz that's how the group grows through word of mouth.
But it's open to anyone who is or wants to become a mother and identifies with having a chronic illness.
Kara Wada, MD: Amazing. As you think about kind of advice you would give, if you're saying, "Okay, I wanna help someone become more confident in this role of mothering and chronic illness", what advice would you give them?
Mariah Leach: Are there downsides to being a mom with a chronic illness? Yeah, sometimes it's really hard. Sometimes I have to say no to my kids when I wanna say yes.
Are there upsides though? I think there are. My kids are very compassionate kids. They have learned that you don't judge somebody by how they look because, maybe I look like I'm perfectly fine, but they know that's not always the case.
They check on their friends. They're really compassionate. They learn about kindness and I think they also learned that sometimes being strong doesn't necessarily mean having superman muscles, it means trying again tomorrow if it today doesn't go the way you should.
I think these are really important life lessons that they're learning from growing up with a mom who has a chronic illness.
Kara Wada, MD: Amazing. Instilling resilience from the get-go. Yeah. I like that. I'm working on that with my oldest.
Mariah Leach: It's a work in progress all the time, but it's there and I see it in them, not always.
Yeah. I do see it in them, and I do think that if you want a family, you shouldn't let your own health condition stop you. You're allowed to have a chronic illness and have life goals, whatever your goal life goals are.
Kara Wada, MD: Absolutely. Both-and, not either-or.
Mariah Leach: Yeah.
Kara Wada, MD: And you're not giving over so much control and so much of the decision making capability to your damn misbehaving immune system.
Mariah Leach: I think sometimes you have to work around it. Sometimes you have to change the way you thought it was gonna go. But if you have big goals, you shouldn't let go of them.
Whatever they are.
Kara Wada, MD: Yeah. Thank you so much. It's been wonderful and I can't wait, we're gonna connect again in the coming weeks for the 2nd Annual Virtual Sjogren Summit and oh I'm really excited. Thank you so much for joining today.
Mariah Leach: It's been wonderful. Thank you for having me.
Kara Wada, MD: Hope we have a great rest of the week.
Mariah Leach: You too.
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