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“Make sure you don’t get pregnant” were the words my rheumatologist told me before starting my third biologic for rheumatoid arthritis — Actemra.  

The potential risks of complications for the fetus and for myself were unknown and not worth finding out due to my history of RA and my previous difficult pregnancy. According to my rheumatologist, there were chances of an ectopic pregnancy with tocilizumab (Actemra), and some studies showed that taking the drug may increase the chance of miscarriage and potential birth defects. Plus, pregnancy was not a safe option for me given my history of preeclampsia and the increased risk for it because of my RA.  

Note: This was my personal situation – this doesn’t mean you can’t get pregnant if you have RA. You will need to discuss family planning with your rheumatologist to determine your individual risks.   

This was nothing new to me. I heard the words before, when I started methotrexate, which is often required for people with RA, and various other drugs to treat my progressive autoimmune disease. Some health care providers recommend stopping methotrexate three to six months before trying to conceive to ensure the medication is completely cleared from the body.  

I wasn’t looking to get pregnant — but when my rheumatologist told me to not get pregnant before starting this drug, it stuck in my mind. And it still does — because about a few months later, I found out I was pregnant.  

Unlike my first pregnancy, I experienced very quick morning sickness and knew right away that I was pregnant. I also knew that I had to terminate this pregnancy. Despite knowing well the reasons why I had to terminate this pregnancy, this was not an easy decision. I had to keep reminding myself that my life could very well depend on it. 

Surprises Happen 

Life is a whirlwind full of surprises and mistakes, isn’t it?  

My first pregnancy was a surprise. By the time I realized I was pregnant with my son — who is now 9 — I was nearly six months (23 weeks and one day) into my pregnancy. I was on the pill — birth control isn’t always reliable — and my period was very unreliable. And although I had not yet been diagnosed with RA this was also around the same time that I began experiencing symptoms of RA. I was feeling off. Rheumatoid arthritis can often make you feel like you have the flu, which is not that far off from the uncomfortable sensations of early pregnancy.  

I was 26 years old. I was terrified of being a mom, especially since I grew up without a positive mother figure in my life. I was very scared and anxious and, initially, spent time researching how to terminate my pregnancy with both home remedies and medical help.  

I called up every woman’s clinic pleading for help. They listened to me without judgment and, since I was far along (26 weeks at that point), informed me that I had two choices: Go to Seattle Washington or fly to Ontario. I chose Seattle because it was only a three-hour car ride away. My provincial medical plan was willing to pay for it, so the procedure was booked. 

But something changed in me. Days before my appointment, I called up the clinic and canceled the procedure. My decision to keep the baby and proceed with my pregnancy has been a blessing in my life. I had 14 weeks to prepare to become a mother. Every day I am grateful for the little guy who hid in me, forcing me to grow and change, especially now that I can no longer have children.   

A Constant Fight Against My Own Body 

The first months of my first pregnancy were easy, but after the six-month mark, everything changed. I experienced intense swelling in my hands, wrists, ankles, and feet. I was fatigued like never before in my life — I couldn’t handle a shower without needing to rest from the exhaustion and joint pain.  

I expected this to go away after giving birth. I was told I was dealing with preeclampsia, a serious medical condition that can occur about midway through pregnancy (after 20 weeks) that causes high blood pressure, protein in the urine, swelling, headaches, and blurred vision. Left untreated, preeclampsia can lead to serious — even fatal — complications for both the mother and baby. Autoimmune disorders like RA are a risk factor for preeclampsia. 

But after the birth of my son, the symptoms never went away. Instead, they spread. I knew my chronic pain was much more than the suggested carpal tunnel my doctors said before. I also experienced intense postpartum depression after the birth of my son — it was so severe that I had to be hospitalized.  

The Decision to Have No More Children Is My Own Choice 

I had decided some time ago that I couldn’t have another child – the risks were too high for me. My body was too unreliable. It’s a choice that my rheumatologist told me was common for women with RA. 

I am grateful for the advances in medicine — particularly biologics and health care professionals who’ve helped me learn important self-management skills — so I can get by in life a lot easier than before my RA was managed. However, there is no way I trusted my health to be reliable enough to do the newborn thing again.  

I didn’t trust my body. I was a single mother with a progressive chronic illness. There was no way I could take care of my health, my child, and a newborn on my own while trying to get by on what little assistance disability pays. It’s below the poverty line by the way. I was also worried about going through intense postpartum depression again.  

The decision to not have another child caused a familiar grief period for me. I was used to experiencing grief having gone through a chronic illness diagnosis that landed me on disability. The losses with chronic illness keep coming throughout our time with the illness — and some hit deeper than others. Even though I made the decision to not have another child, I still mourned the fact that I wasn’t able to. It cut deep.  

What Works for One, Might Not Work for Another 

While some other women with RA may be able to handle more children, everyone is different, and their RA might affect them differently.  

I had to take a long and hard look at how my disease affected my everyday life when considering having another child, which I thought about at the beginning of my RA diagnosis, before I knew what I was in for with RA. I looked at my finances, my relationships, my family, support, and the comorbidities that I developed and that can come with RA. 

I had to look at what medications would best treat my disease and which ones were safe enough for me to have another child on. Figuring out which medications can help with your disease is one thing but if you are thinking of becoming pregnant there is a lot of discussion to be had with your rheumatologist about which ones may be safe for pregnancy. Everyone is different and, unfortunately, the ones that were safe to get pregnant on did not work for me. 

I also struggled with birth control and what would be appropriate for me, my medications, and my autoimmune disease. I felt off on the pill. Every time I was on the pill, I would notice a spike in my depression and anxiety. At one point, I had a Mirena IUD leading to an infection that nearly caused me to go septic.  

Birth control wasn’t a favorable option due to how I felt on it with my current medication. I knew I didn’t want my body to go through pregnancy again, and after weighing my options with the gynecologist, I decided to get a tubal ligation (a surgery to close a woman’s fallopian tubes) to prevent any more pregnancies. 

Everyone Deserves to Make Their Own Decisions About Their Own Body and Their Health 

Even though I am in Canada, the overturn of Roe v. Wade terrifies me as someone who needed to terminate a pregnancy for medical reasons — and who has faced the choice of becoming a mother.  

Abortion is part of health care — and it has been for years. It shouldn’t be denied to anyone in need of one. We all have different lives and a different story. The right to make the decision to have an abortion should lie in the hands of the woman who is pregnant. In the end, it’s their own decisions concerning their own bodies and often even when it isn’t an easy choice it is a necessary one 

Have the abortion bans impacted your ability to access medications like methotrexate? If you would like to share your concerns or story, please email Zoe Rothblatt, Associate Director of Community Outreach. 

Want to Get More Involved with Patient Advocacy? 

The 50-State Network is the grassroots advocacy arm of CreakyJoints and the Global Healthy Living Foundation, comprised of patients with chronic illness who are trained as health care activists to proactively connect with local, state, and federal health policy stakeholders to share their perspectives and influence change. If you want to effect change and make health care more affordable and accessible to patients with chronic illness, learn more here