Mariah Leach, 35, of Louisville, CO, has given birth to three children since being diagnosed with rheumatoid arthritis (RA) at the age of 25. Her experiences prompted her to create a Facebook community that focuses on chronic illness and motherhood called Mamas Facing Forward, which currently has almost a thousand members from all over the world. She is in the process of launching a corresponding website to consolidate existing resources on this topic. Her own experiences and interviews of other mothers inform the following “wish list.” (Please note, some last names have been excluded to protect patient privacy.)
For many women who receive a diagnosis of RA, one of their first concerns is how the disease will impact their ability to start, expand, or care for their family. Motherhood is a journey with many stages, and women living with RA need the advice and support of their doctors to get through all of them.
#1: Please remember that motherhood may be very important to us.
Motherhood is an extremely important life goal for many women. “Doctors seem quick to advise us not to have children or any more children because parenting with RA can be difficult, but some days my children are the only things that keep me pushing through,” says Amy, a mother of four who has been living with RA for 15 years.
Many mothers with RA shared that their doctors weren’t as supportive or empathetic about their motherhood goals as they would have liked. “We’re on the fence about baby number three, and my first rheumatologist would make dismissive comments before quickly moving on to the next subject,” says Jaime, a mom of two who has been living with RA for the past 3 years. “He may have been trying to tell me it was more important to focus on my health right now, but some more compassion and acknowledgement of the lost freedom to choose would be nice. No matter what, we still want our family planning decisions to be based on our families and not our disease.”
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