Listen to this Article
Mariah Zebrowski Leach is a wife, mother and advocate. Her life with rheumatoid arthritis benefits from the support of her husband and kids. Her primary focus is a pregnancy and parenting website for moms and moms-to-be living with chronic illness. https://www.mamasfacingforward.com
Click here to read the 1st part of Mariah’s interview.
Do you have any food triggers?
When I first got diagnosed nobody knew what going gluten-free was, but I tried it for a good six months to see if it had an impact. At that point, we were searching for a treatment. I was in law school and really struggling so I decided to try everything to find some improvement. I know plenty of people who find that certain foods trigger them or that a certain diet helps. I tend to aim for a more natural, anti-inflammatory, kind of Mediterranean diet because that seems like a healthier choice. When I was trying to be gluten-free I found that the easiest way back then—when there weren’t so many gluten-free options—was just to eat fresh things and eliminate processed food. And so that’s what I aim for, but I don’t have food triggers the way some people do. Everyone is different.
Tell us more about your career
I have a law degree and a master’s in environmental policy. I did finish the program that I was in when I got diagnosed, but when I got to the end, I thought, I have RA. I would like to have a career. I would like to have a family. But I decided doing both of those things at the same time was too much. So, I focused on starting my family. Since then, I’ve found some interesting ways to use my education. I do a lot of writing and health advocacy work. I’ve gone down to the capital in Denver and testified on different laws to argue my point as a patient and why certain laws should or shouldn’t be passed. So, I do think my education has been really valuable to me. It is certainly not the career path that I envisioned for myself, but I decided that having a family was more important.
What methods do you use to unwind while you’re on a trip?
It can be easier said than done, especially when travelling with children. But my husband and I work together to make sure that both of us get breaks. Generally, he puts the kids to bed because, usually by the end of the day, I’m short on energy. So that’s a time to relax for a little bit while he puts the kids to bed. And then after that we have some time together before we go to bed.
Although on our last trip, we went far north and it didn’t get dark until, like, 10. Trying to put the kids to bed in the campground at a reasonable time was hard because it was still light out. So, that was a little different for us to have the kids up a lot later than they were used to.
But we try, when travelling, to build in downtime. You know, this is a day where we’re going to sit and let the kids play by this lake and we’ll have a relaxing day. I struggle with that because I want to see and do everything. But I find that for my benefit and the kids’ benefit, we have to build in some downtime. Staying in the same place, not moving every single night to a new place, gives some consistency to slow it down. That really has an impact on how I’m feeling.
What strategies or insights help you manage your RA and parental responsibilities?
I have three children, aged 11, 9 and 5. All my pregnancies were after my diagnosis, so RA has always been a factor. I keep an open dialogue with my kids about my arthritis, which I do think helps them understand my limits. I keep my kids’ activities to a level that I can manage. Each of my kids does maybe one extracurricular activity.
We don’t do everything under the sun or everything that maybe every other family in the world is doing. And I think there are a lot of other moms out there that feel some guilt that they’re not keeping up. I even had a little bit, especially as my kids started to get older, wondering if we’re not doing enough. But we want to preserve our family time and preserve my health and not run me ragged because they’d rather have a mom they can interact with than one they can’t.
There’s a great book by Brene Brown, The Gifts of Imperfection. One of the chapters is about choosing a slower lifestyle and not getting caught up in having to do everything under the sun. That was really helpful to me, knowing we can make the choice that works for our family. It doesn’t have to look the way other families look. So that’s one thing that I do. Brown has these guideposts for wholehearted living, which help you figure out what ideas to let go of, and what ideas to cultivate. Guidepost #7 focuses on letting go of exhaustion as a status symbol and productivity as self-worth, while concentrating on cultivating play and rest. I think this guidepost is an especially good lesson for moms, who are expected to do everything and be everywhere.
I don’t volunteer at my kids’ schools the way other moms I know do. I don’t necessarily go to every single thing that happens. We pick and choose. Sometimes my husband will take them to something, and I won’t go. And I know other moms who would never consider doing that. They feel it’s their obligation to be there, but I feel it’s my obligation to be the mom that my kids need and that is a healthy one who can do fun stuff with them when the time comes.
Tell us about support from your family
My husband is very supportive. He says, “This is our challenge, not yours only.” Support is key. Before we were married, when I first got diagnosed, I worried how my RA diagnosis would impact his life. I sat him down and said, “Listen, I have to live with this for the rest of my life, but you don’t. Are you sure this is what you want?” And he chose that it was what he wanted. And I’m not saying that it has always been easy; it is certainly sometimes a struggle.
We communicate a lot. And we consider this to be our challenge, that we are both facing. It’s not my problem that I have to fix by myself without impacting him. It’s our challenge. It’s a fact of our life. The life we want to live is impacted by this and we both have to figure out how to face it. We make it a kind of team building project, instead of a source of guilt and anxiety for me. That framing really makes a difference for us.
To a certain extent it’s now a whole family thing. As my kids grow older, they’re learning what they can do to help. We talk about what my limitations are and what they can do to help me more. They take on heavier chores, like carrying laundry baskets up and down the stairs for me.
I would never wish a chronic illness on anybody, and I would prefer if my children did not have to grow up with a mom who was dealing with health issues. It’d be great if it would all just go away, right? But I do think there are some benefits to it. The kids are compassionate and understanding. They know that you don’t judge someone by how they look, because that’s not necessarily how they feel on the inside. I think these are pretty important life lessons that they’ll take out into the world with them.
What family lessons can you share with other mothers who might not have the support you have?
One of the hardest things for me, as a mom especially, was learning to ask for help when I needed it. I probably should have started doing it as soon as I was diagnosed with RA, but I didn’t because I was very independent and very sure that I could handle myself. But when I hit motherhood, I needed to ask for help. There was no way I was going to do it all myself and it was really challenging for me. What I started doing, when I couldn’t bring myself to ask for help, was to start accepting help. If my mom came over and said, “You want me to unload the dishwasher?” Instead of saying, “No, no, I can do it later,” I’d say, “yes, thank you”. I taught myself to do this when someone offered help. That made it easier to get to the point where I could request the specific help that I needed.
I advise other moms to accept the help they’re offered, if they’re lucky enough to have such people in their life. I used to find myself pushing it off and then wishing I hadn’t done that. There’s a lot of pressure on moms from society to be able to do everything, be super humans. But, whether you have an illness or not, everybody needs help. Nobody is 100% independent. I also think that accepting help, for example, from my mom, helped her understand. As I slowly let her in, she better saw my limitations. I don’t think she really understood what the RA was doing to me until I started letting her help me and she saw how it was. So that was a kind of an added bonus.
What advice can you offer to parents hesitant to travel because of RA?
I would say to start small and plan in advance. Have a little arsenal of supplies that you take with you, just in case. Before I travel, I’ll contact my rheumatologist and sometimes ask him to prescribe me some extra anti-inflammatories or prednisone that I can bring with me in case something goes wrong. If you can get to the point where your doctor trusts you to manage those things, it can be really helpful. I pack things like wrist splints if I see the possibility of those issues on the trip. You have to be prepared and flexible when you’re travelling because your plans might need to change.
I think, in some ways, having RA kind of prepares you for being a parent because you have to be flexible with kids too—they’re always changing their minds. If someone misses a nap, then the whole plan goes out the window. You have to be adaptable and figure out how to move forward from whatever happens. But I think it’s still possible to enjoy travel with your kids, if you plan it carefully. It takes practice. If you take a trip and it’s really hard, that doesn’t mean that every other trip will be like that. You can learn from a bad experience what might help it be better next time.
How do you balance your advocacy efforts with being a mother?
Well, sometimes, like during the pandemic when I had all three of my children doing distance learning at home with me, I didn’t do any advocacy. Sometimes I have the kind of mental and emotional capacity to do it, but I don’t think when you’re an advocate that you have to do it at a certain pace forever. You do it when it works for you. My advocacy about motherhood, parenthood and chronic illness began when I was 25 years old, just diagnosed, about to get married, looking at my life knowing I wanted to have a family. I was desperately searching for other people who had done this, who had started a family or who had been diagnosed while they already had a family and were managing and thriving. I could not find them. Granted, this was before much social media existed. I think today it would be easier. But for me, it was really difficult, and I felt very alone.
I had a close group of friends, and we all had our first babies within a few weeks of each other, so we had this new mom bond. We were learning all kinds of stuff together, but I was dealing with things that they didn’t know how to support. At the time, there wasn’t much data on medications and breastfeeding, so I had to decide, do I breastfeed my son or do I treat my RA? Is he safe in my arms if my RA is flaring and I pick him up? Since my friends didn’t know how to support these big issues, I wanted to be there for other women, let them know they’re not alone. Let them know that it’s hard but we can do it and it’s still a totally valid life choice to be a mom with a chronic illness.
We need to talk to other people with experience. I have a friend with RA who is an occupational therapist; she’s written some articles for me about different ways to pick up or hold your baby without irritating your wrists. We need to be able to talk to a mom who, for example, has experience with a carrier and knows how to strap a baby easily and safely in, so you can have that closeness without putting pressure on your wrists. The people around you need to know how to support you, but it’s also important to be connected to moms with this specific kind of experience.
Do you have many mothers living with RA in your network?
Lots. I run a Facebook support group, with almost 3,000 women. They’re not all living RA, but we have a lot in common. Many have other types of chronic illnesses or invisible disabilities like IBD, etc. There are a lot of overlapping challenges. I’ve been trying to bring together moms living with health issues to create a hive mind, a source of information. There are times when, even if I don’t know the answer because I don’t have the experience, someone in the group will.
For example, before I had my daughter, someone in the group asked about putting rubber bands in her daughter’s hair. She was struggling with her hands to put her daughter’s hair in a ponytail and that was taking a toll on her self-esteem since she felt like her daughter looked disheveled and she felt judged. There were women in the group who offered different techniques, tools, videos. They really came together and helped with something that seems like a small issue that shouldn’t matter, but it really mattered to this mom. Being connected to other moms who are going through this can be really important.
Tell us more about your advocacy
I work on some health legislation when there’s relevant stuff going on in Colorado. I get involved with speaking up for the patients, representing them in state government. I worked on a bill about step therapy. Let’s say your doctor prescribes a certain biologic medication, which he thinks is best to treat your RA. Then your insurance company comes back and says, “No, you have to try this cheaper one before we’ll pay for this more expensive one.” That can be really problematic for patients and they end up suffering longer before they get the medication they need. If they change insurance companies and the new one makes them do it again, it can interrupt a treatment that’s going well. That can really be a problem for patients.
From the insurance side, you can see why they would rather have to cover the inexpensive medication and not the expensive one, right? Lawmakers had to decide whether or not to pass a law that requires you to not repeat step therapy if you’ve already done it. Who shows up are the lobbyists from the insurance companies and from the pharmacies—not the patients. As patient advocates, we go there and tell personal stories, about how this impacts someone’s life. I think that sharing your story with a legislator can really make them see how it impacts a real person’s life.
Find Mariah @Zephyr.travels or visit her website https://www.mamasfacingforward.com