My Life with RA: Mariah Zebrowski Leach
The Editorial Team at RheumatoidArthritis.net had the opportunity to interview Mariah Zebrowski Leach. Since her first article in 2013, Mariah has documented and shared her experience of living with rheumatoid arthritis (RA).
Upon being diagnosed at the age of 25, Mariah has advocated for raising awareness about chronic illness, particularly for women with chronic health conditions who are or would like to become mothers.
In this interview, we talked to Mariah about balancing motherhood with RA, and how she hopes to continue to support people who are living with chronic illnesses.
An interview with Mariah Zebrowski Leach
RheumatoidArthritis.net: In your bio for the website, you mentioned that you were diagnosed with RA at age 25. As you reflect on these years since your diagnosis, how has your understanding of RA changed over time?
Mariah Zebrowski Leach: I’ve learned a great deal since I was diagnosed in the middle of law school. When I graduated, I realized it wasn’t realistic to start both a law career and family while living with RA – and I chose to focus on my family. But I didn’t let my hard-earned writing and research skills go to waste. Instead, I found a flexible career as a freelance medical writer and patient advocate.
I’ve attended the American College of Rheumatology Annual meeting for the past six years, learning about the latest developments in understanding and treating RA. I’ve researched and written for many patient-oriented publications like this one, including Arthritis Today and RA Today, and I’ve had the opportunity to write for physicians as well, in publications like Rheumatology Network and Rheumatology Nurse Practice. I’ve testified on state legislation in Colorado and met with my representatives in Washington, DC.
All of these opportunities to continue learning about RA have really given me hope. I know, from experience, that living with RA can be disheartening and overwhelming, but there are so many wonderful people – doctors, nurses, researchers, lawmakers, advocates, and more – who are working every day to make life better for people living with RA.
RheumatoidArthritis.net: You wrote a lot about your experience with RA during pregnancy and its impact on parenting. Now that your children are a bit older, how have you continued to manage parenting with RA?
MZL: Managing pregnancy and motherhood has been a huge part of my RA journey. When I first started writing for RheumatoidArthritis.net, I had a one-year-old son and we were trying to get pregnant again. Today, my boys are 8 and 6 – and they have a little sister who is 2! Our house is busy and loud and full of love.
In some strange ways, I think RA helped prepare me for motherhood. Being diagnosed with RA taught me the importance of realistically allocating my time and energy – giving myself credit for what I can accomplish and letting go of guilt for unfinished tasks.
I’ve learned to prepare in advance and stay organized to make things easier on days when I have more pain and less energy. And RA has taught me to work towards accepting things I can’t control while finding a way to keep facing forward anyways. All of these skills are also very useful when it comes to parenting small children!
RheumatoidArthritis.net: One article that resonates a lot with the RA community is “8 Things Not to Say to Someone Who Has RA”. As you reflect on your experience of living with RA, do you think you’ve gotten better at how you handle hearing these statements?
MZL: Definitely. After more than a decade of living with RA, I tend to take these sorts of comments as an opportunity to correct misunderstandings and provide real facts and information about RA. While it isn’t always practical to contradict the commenter directly or start an involved discussion, an insensitive or uninformed comment helps reinforce my commitment to spreading awareness overall.
RheumatoidArthritis.net: Many community members find it challenging to manage the ups and downs of RA. How have you managed to cope during challenging times?
MZL: For me, the most challenging times with RA have been while managing pregnancy and being a new mom. When I decided to get pregnant the first time, I wanted desperately to connect with another mom who had RA and who was thriving (or at least managing!), but I simply couldn’t find anyone.
At the time, there was far less social media in general, and patient support groups like this community didn’t exist. In the end, all I could find was a book about arthritis and pregnancy I had to order all the way from Australia. I felt extremely isolated and struggled to cope with RA as a new mom. I knew there had to be other moms out there who felt the same way – I just didn’t know how to find them.
That’s why I launched Mamas Facing Forward, a private, moderated Facebook support group for moms and moms-to-be living with chronic illnesses. In the past few years, the group has grown to support 1,800+ women from all over the world. It provides us with the opportunity to connect with each other, find true understanding and support, and work together to brainstorm specific issues caused by the chronic illnesses we are facing.
We also have a website full of useful resources for pregnancy and parenting with a chronic illness. This project not only gives me the opportunity to provide support to other moms and moms-to-be, but I benefit from it personally as well because I know I have a whole community of support behind me.
Read more about Mariah's RA journey throughout the years.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?