The Stress of Pregnancy for a Woman With Rheumatoid Arthritis

Pregnancy is supposed to be a time of joy and anticipation. But when you have a chronic illness, like rheumatoid arthritis, it can be a time of worry and concern. For me, the problems began before the pregnancy for my first child. Let me first explain that people with rheumatoid arthritis often take a mind-numbing amount of powerful, immune-system suppressing medications. These medications need to be respected as not only can they make you feel human again, but they can also come with their fair share of side effects, like serious infections and allergic reactions to name just a few.

My journey began at an appointment with my family doctor who, upon learning that I wanted to have a baby, referred me for pre-pregnancy counseling. I came out of the counseling session with a long list of warnings about what the medications could do to a growing fetus or that they didn’t actually know what the medications could do. I was perplexed and confused. How can it be that these medications were not tested in pregnant women? These were the same medications that were provided for me for most of my life beginning shortly after a diagnosis of juvenile idiopathic arthritis at the age of 14. This is when I learned that the drug approval process by government regulators (like the FDA and Health Canada) generally excludes pregnant women from clinical trials.

OK, I get it, there are risks (perceived and real) for the fetus and baby, though surely there are women who have taken these medications during pregnancy and are subsequently monitored? There is some great work being done to systematically collect information on these pregnancies (for example, through Mother to Baby) but the information is often difficult to find. First, you need to know this field of study exists, the organizations involved in conducting this research and then you need to decipher the available information. Remember, we were just super excited to be having a baby!

When the information is available, it is often incomplete, leaving the mother-to-be and her partner attempting to make a decision with only a fraction of the information. This scarcity of information creates a ton of stress on the couple. Remember, this is supposed to be a happy time. A baby is coming. The future holds so much promise. But what if the medication causes a birth defect? What if the drugs affect the pregnant mom? Will I go into early labor? Will the child have a lifelong disability?

The lack of a coordinated effort to obtain this valuable information on medication safety merely passes the burden to the person living with the disease and their partner. A person’s tolerance of risk is such a personal matter. As a result, some women decide to come off of all of their medications prior to becoming pregnant while others decide to keep taking them. Some women may even decide to not have a child. The woman and her partner need to weigh many factors, including the reliability and completeness of the available information, the risks to the fetus and the risks to the mom (such as damage to the joints).

And so, after having two of my own children (my daughter is 9 years old and my son is 3 and a half), I wanted to rectify this situation so others would not be as lost as I was. As a board member of the Canadian Arthritis Patient Alliance (CAPA), I launched a project on pregnancy and parenting with arthritis. The first step was to launch a survey to identify patient information needs as it relates to pregnancy and parenting with arthritis. As you can see in the summary of the survey results, the most significant concern identified by patients was medication safety during pregnancy and breastfeeding followed by dealing with fatigue and flares and the physical care of children.

The next time you see a pregnant woman glowing in her sixth month of pregnancy, remember me and the other women living with rheumatoid arthritis. Their journey is not necessarily as joyful as it may seem.

The Mighty is asking the following: What is a part of your or a loved one’s disease, disability or mental illness that no one is aware of? Why is it time to start talking about it? Check out our Submit a Story page for more about our submission guidelines.