“I always assumed I’d be a mom,” Mariah Leach, 35, from Louisville, Colo., tells Yahoo Lifestyle. Rheumatoid arthritis wasn’t going to derail her plans. “My husband and I never even talked about not having kids,” says Leach. “It was more a matter of how do we make it possible.”
Although rheumatoid arthritis — an autoimmune disease that attacks joints, usually in the extremities — in and of itself doesn’t harm the baby if it’s under control, medications that help quell flare-ups can. “Certain treatments increase miscarriage and birth-defect risk and need to be stopped or transitioned one to six months before conception,” says Lisa R. Sammaritano, MD, an associate professor of clinical medicine at Weill Cornell medical college in New York City.
There’s also the issue of how pregnancy and parenthood affect women with rheumatoid arthritis. “Moms and moms-to-be need to be concerned about how the physical effects of their disease will limit their ability to care for themselves and the baby,” says Sammaritano. “Whether it’s joint pain, swelling or fatigue, [rheumatoid arthritis] imposes another level of difficulty that can make pregnancy and parenthood much more difficult.”
When Leach was pregnant with her sons, now 6 and 4, she was told that ceasing her treatment was her safest option. “I didn’t know if I’d be able drive, walk, even lift a cup or wash myself,” says Leach. “The idea of potentially dealing with those issues while pregnant or with a newborn was scary.”
The reality: Both pregnancies left Leach achy, stiff and fatigued. But like 20 to 40 percent of women with this disease, she also experienced a remission — or at least she did during her first pregnancy. “We really don’t have a good understanding of why this happens or doesn’t,” notes Sammaritano. “Each pregnancy is different.” For instance, with her second pregnancy, Leach could barely walk or care of her toddler. “I worried that I crossed a line with my body; that if my [rheumatoid arthritis] stayed like this, I wasn’t going to be capable of caring for my children,” says Leach.
“Often, even women with pregnancy-induced remission experience a postpartum flare within weeks after birth,” says Sammaritano. Leach’s arthritis returned six weeks postpartum. “Changing diapers, closing teeny snaps on onesies, carrying my children — the fatigue and breastfeeding [were] all very difficult,” recalls Leach.
Since not all rheumatoid arthritis drugs are compatible with nursing, Leach’s postpartum treatments for the condition were limited. “I clawed my way to the three-month mark with breastfeeding my first, but then I got to a point where I could barely lift him. I had to choose between giving him breast milk and being able to care for him,” shares Leach.
“I always felt like there was an expectation that I needed to sacrifice my own health to create the best situation for my babies,” she says. And with no other moms with rheumatoid arthritis to turn to, this decision was at once heart-wrenching and isolating. “I didn’t have any friends with [rheumatoid arthritis] to talk to about how it felt to choose between breastfeeding and treatment. I wasn’t even able to ask anyone for advice when my hands hurt too much to change a diaper,” she says. But shortly after Leach had her second son, things changed.
Leach met a group of patient advocates at a conference for her work as a health writer. “We were all dealing with different chronic illnesses, but had so much in common,” she says. “It made me think about how moms with chronic illnesses are all facing similar challenges — and we need each other.”
Enter: Mamas Facing Forward, a 1,000-plus member Facebook group, which Leach began in 2015. Here, moms and moms-to-be with chronic illnesses connect, share resources, ask questions and motivate one another. “It’s amazing connect to so many different types of moms who all share something so central to their lives,” says Leach.
The group offered Leach the cheering squad and sounding board that she craved, especially during her third pregnancy. “With the help of the community — and my doctors, of course — I decided to stay on a medication for my entire pregnancy this time, which kept my [rheumatoid arthritis] in much better control. I was even able to breastfeed my daughter for nine months,” says Leach.
She adds, “It’s funny, even today, I still to remind the members of Mamas Facing Forward that while I may lead them, I need them as much as anyone else. No one can do this alone.”
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