Family Planning with Lupus

Family planning can be a tricky, delicate subject for many people. Having lupus only makes the matter more challenging. While it does not mean that children are not a possibility, it does mean the conversation may take more time and consideration.

In the 2020 Lupus In America survey, we learned from you that women with lupus often wonder if children are even possible. Results showed that 84 percent of 589 people who took the survey have children, while 41 percent postponed or decided not to have children because of lupus.

To learn more about how you are handling family planning, we reached out to members of our Facebook community and asked: “Has lupus impacted your ability to parent?”

Nearly 100 of you answered, and here is what you said.

“I have not been able to carry any pregnancy to term.”

Lupus and the drugs often used to treat it can make getting pregnant difficult, if not impossible. Sometimes, doctors recommend that women on certain lupus drugs not get pregnant, since the drugs could affect the baby. A number of women in the community are currently facing this challenge, and they are finding ways to make peace with it.

Despite the challenges, many women have been able to overcome the odds and give birth to healthy children.

“Facing infertility because of it.”

“When I got diagnosed, I was 40. Just before that, I was trying to conceive one last time when my rheumatologist told me I cannot because the medication I was on would kill the baby. I was heartbroken.”

“It took me 10 years to conceive each of my children. Had two miscarriages before that. I was told I had endometriosis. Years later, I found out I had no signs of endometriosis. Doctors could not understand, until I was diagnosed with lupus.”

“I was on chemotherapy for 6 months, and the doctor said it could cause fertility problems. I was really devastated. I am only 23 years old and just got married. And whenever people talk about babies and getting pregnant, it just breaks me because I do not know if I will be able to get pregnant. So, I really hate it when people pressure me to have a baby. Physically and emotionally, I am not ready.”

“I have not been able to carry any pregnancy to term. So, yes.”

“I was barely able to keep up with the kids.”

Many of you in the lupus community who are raising kids struggle daily. You’re fighting fatigue to show up for your kids and manage a full household. Most people with lupus constantly contend with some level of fatigue, so it makes sense that parents struggle even more.

However, many of you are determined to be good parents and are doing everything you can in the house while trying your best to take care of yourself. It is a balancing act that takes practice.

Remember, there is no such thing as the perfect parent – lupus or otherwise. Just because you are not able to show up with endless energy does not mean your kids have less of a parent. Energy levels do not affect the ability to love deeply.

“I was barely able to keep up with the kids. I had to take naps when they did, so I could have enough energy.”

“I am not as active with my kids. I feel bad for them.”

“Lupus affects my ability to parent almost more than anything else in my life, because parenting is so constant and consuming.”

“I decided to not have children when I got diagnosed.”

Others of you shared that having lupus has shifted life plans. It can be a hard, heartbreaking decision. There are a host of reasons why some women in the lupus community chose to not become mothers. Family planning can be tough, and only you know what is right for you.

“I am actually scared to get pregnant.”

“I decided to not have children when I got diagnosed.”

We want to give a heartfelt thank you to everyone who shared. We know fertility is a sensitive topic but one that weighs heavily on so many. By having this candid conversation, it is our hope that our community members feel less alone as they walk this path and figure out what is best for them.