I am not a doctor or have any medical training. This post simply shares my understanding and my personal experience with having an autoimmune disease.
In 2015 I was diagnosed with Sjögren’s (SHOW-grins). It’s an autoimmune disease (AI); for me, it shows up by having my antibodies attack glands that produce fluids such as tears and saliva. I have done various things, such as implementing diet and lifestyle changes that have helped improve symptoms & reduce flare-ups, but there is no cure.
My partner and I knew we wanted to have children. I was nervous, not knowing how having Sjögrens would affect that plan. My doctor did some testing, and up to that point, my autoimmune disease had been mild. She mentioned that many women actually go into remission because the body stops attacking itself so as not to harm the baby.
(Isn’t that so cool? – how amazing is the body?)
My pregnancy started just as my doctor said; remission and no reactions to foods that had caused flare-ups in the past. I was amazed; I felt so good- between nausea and everyday aches and pains. But mid-pregnancy, I had my first flare-up. It was awful! I had this flare-up once before, but this time it felt 10X worse. I had sialadenitis, a salivary gland infection. My left cheek was very swollen, and the pain seemed unbearable. (Little did I know what I had coming with labor pains!) I was on pain medication and antibiotics. I remember being so worried, but the doctor assured me that this wouldn’t harm my baby. I was just so scared.
After about a week, I finally started to feel better. The rest of my pregnancy went on with minimal issues. Now, labor is another story for another time.
About a month after having Natalia, I got a tingling feeling in my left cheek and swollen lymph glands, which are the first signs of the saliva gland infection for me. I downed all the anti-inflammatory food and supplements that I could get my hands (and could take while EBF). But two days later, I was in urgent care getting antibiotics. This happened six more times. Every. Single. Month. I saw an ENT, got numerous x-rays, labs, you name it- I did it. No one could explain what was going on.
I went back to my naturopath (ND) (who originally diagnosed my disease), desperate for some help. I felt guilty and powerless. This was not only a medical issue but also had a physical aspect to it. It took almost two weeks for the swelling to go away. I had to go to work, daycare, grocery store with people staring. I know it’s superficial, but it didn’t make it any easier.
After months of trying numerous things, we noticed there was a pattern. It happened around every four weeks, which coincided with my cycle- I still had not had my first menstrual period since having Natalia at this point. My ND recommended we try making some changes with breastfeeding; my body seemed to go haywire with all the hormone changes. Worst case scenario, I would have to stop breastfeeding altogether. But first, we’d try to decrease night feedings. Within a few weeks, I could feel the difference, and for the first time in 8 months, I didn’t get an infection.
Being a mom is hard. Being a first-time mom is hard. Sleepless nights are hard.
As my husband and I begin to think about a possible baby #2, I can’t deny the fear I feel so deeply. I told myself while being so sick, I would never get pregnant again. I don’t know if I will get the infections or have any other flare up during pregnancy or postpartum. There is still so much unknown with autoimmune diseases and how hormones affect it. But I can say with certainty that I will give myself and my body more grace.
Have you experienced pregnancy or postpartum with an AI? How did you decide to grow–or not grow–your family?