I told this true story at a Story Collective event held at the Junkyard Social Club in Boulder, Colorado on April 30, 2022.
It was some ungodly hour of the morning, before the sun had even come up. I was standing at the nursery window after feeding my newborn for the millionth time. I stood looking out into the darkness, my arms aching as I gently patted his back, when I felt a gush of spit up go straight down the front of my shirt.
My firstborn was what they call a “happy spitter.” He wasn’t in any sort of distress, but nearly every time I fed him – and sometimes for no reason whatsoever – his tiny, adorable mouth would open and out would come a sort of nonchalant reverse river of milk. Then we would both have to change our clothes. The laundry was endless.
That particular morning, after changing us both and starting some laundry, I sat down and wondered what on earth we were going to do all day long. I was already exhausted and sore and the morning had barely even started. My husband was at work, my sister was at school, and I didn’t have many mom friends yet. I was so lonely.
I decided to try going to a support group for new moms that I had seen on a flyer in my pediatrician’s office. I painstakingly loaded my son into the car and when we arrived the group facilitator greeted us warmly and showed us into a bright room.
There were about a dozen new moms in the room. Most of them were already seated in a circle on the floor. They had each put a blanket in front of them so all the babies were laying in the middle – like a kaleidoscope of babies. I awkwardly lowered myself to the ground and pulled a blanket out of my own diaper bag – of course I had several to be prepared for spit up. I added my baby to the array.
As I looked around the room, it was clear that most of the other moms had been coming to group for a few weeks already. They all seemed to know each other and my social anxiety started to set in. Luckily, the group facilitator started speaking soon after that. She talked for a while about how difficult and isolating new motherhood can be, and I began to relax a little bit. Then the facilitator started going around the circle, giving each mom a chance to talk.
The first mom said that she was exhausted and she couldn’t figure out how to get her baby to sleep more. All of us could commiserate with that. The next mom in the circle shared that she disagreed with her husband’s parenting style, and explained that it was causing them to fight all the time. She didn’t know what she was supposed to do. Two more moms were struggling to decide whether to stay home or go back to work. As each mom spoke, there was lots of murmured support and sympathetic nodding. Sometimes the group even had suggestions.
My turn came. I thought about all the spit up. I was pretty sure other moms would be able to relate, but honestly the spit up was mostly just annoying. And gross. My true struggle – the reason I really needed support – was the fact that I had been diagnosed with rheumatoid arthritis several years before getting pregnant, when I was just 25 years old. And now, as a brand-new mom, I was really struggling to physically care for my son every day.
The way RA works is that my immune system gets confused and attacks healthy tissues in my body by mistake, mostly the lining between my joints. Since there are 360 joints in the human body, there are plenty of opportunities for this confused attack. I’ve experienced pain in obvious joints, like knees, toes, fingers, and wrists. But I’ve also dealt with pain in my hips, shoulders, pelvis, jaw, and ribcage.
RA is also a degenerative disease, meaning that over time the inflammation can cause permanent damage. While there are treatments, ten years ago there was almost no information about the safety of those treatments during pregnancy and breastfeeding. So, when I told my rheumatologist I wanted to start a family, he advised me to stop taking all my medications. So now here I was with untreated RA flaring in just about every joint in my body – and a newborn to care for.
When my turn to share finally came, I had already been sitting in that circle for at least half an hour. I was trying to hide how physically uncomfortable it was for me just to be sitting on the floor. But I had come for support, so I took a deep breath and I tried to explain what it was like to be a new mom with untreated RA.
I told that circle of moms that it was painful for me to hold my son; that sometimes I wondered whether he was even safe in my arms. I talked about feeling isolated and how much I was physically struggling to keep up with all the sour-milk laundry.
Then I shared my biggest struggle. I desperately wanted to breastfeed my son. For one thing, everyone tells new moms that “breast is best,” especially here in Boulder. But for me personally, I also truly loved the bond my baby and I were forming through breastfeeding. I loved looking down on his tiny face while my body actually did something right for a change – nourishing by baby – even if most of that nourishment ended up on me as spit up afterwards.
Unfortunately, there was no denying that my RA was getting out of control. I was slowly coming to an inevitable but heartbreaking conclusion: I was going to have to switch to formula so I could go back on my medications. Otherwise, I wasn’t going to be able to take care of my own son.
When I finished talking, the group was silent. There was no murmuring; no nodding. Nobody had a suggestion for me. Even the facilitator seemed sort of at a loss as she moved on to the next mom in the circle. But I felt proud of myself for at least asking for the support I knew I needed.
When group was over, I was shoving a dirty sour-milk blanket into my diaper bag when another mom approached me. Her baby girl, who was clearly several months older than mine, was perched on her hip. The other mom quietly asked for my email address and as I wrote it down, I started imagining a coffee date with my new mom friend.
Unfortunately, it quickly became obvious that she had no interest in getting to know me. What she wanted, it turned out, was to tell me how to cure my incurable RA. “Rheumatoid arthritis,” she told me with authority, “is caused by bacteria. I’ll email you some information for how to get the bacteria out of your body.”
I was caught off guard. There was a long, awkward pause. I looked down at my son and with the friendliest tone I could muster asked where she had gotten this information.
“I heard about it from a doctor I worked with,” she told me. “What kind of doctor?” I asked.
“A homeopathic…veterinarian.”
In that moment, I think I may have forgotten every word in the English language. In the silence that followed, the other mom shifted her daughter effortlessly to her other hip, while my swollen fingers struggled with the buckles on my son’s carrier. I tried explaining to her that rheumatoid arthritis is actually quite serious. I emphasized that there is no cure. I confided that I usually have to take chemotherapy medication and give myself an injection of a biologic medication, just to keep my joints from becoming permanently deformed.
“You don’t need to use any of those poisons,” she informed me. “You just have to be willing to get the bacteria out of your body. Otherwise, you are choosing to have a lifelong condition.”
There I was: a lonely, struggling new mom with an untreated chronic illness who had been vulnerable in front of a group of strangers, and this woman was telling me I was choosing to have a lifelong illness – unless, of course, I wanted to take medical advice from her veterinarian.
I don’t remember how I got out of that room. I do remember taking my son home and crying. Then I changed my shirt because, guess what, spit up again. I felt so impossibly alone. But, as I loaded the washing machine again, it occurred to me that there must be other moms in my position. Moms struggling with their own health and feeling as misunderstood as I did in that moment. More than anything I wanted to help them. But, first, I had to find them.
So, obviously I started a Facebook group. Today my group – called Mamas Facing Forward – has members from all over the world and we’ve worked hard to build a truly supportive environment. If a mom or mom-to-be shares her own health and parenting struggles with us, the group responds with understanding, resources, product recommendations, and plenty of encouragement and support. I really love that I’ve been able to connect so many moms living with chronic illness, so none of us have to end up feeling discouraged or alone.
As for me, nearly ten years later I now have three kids and somehow twelve times as much laundry? Though at least now the dirty laundry is covered in mud and craft glue instead of sour milk. Most of the time. The group I created – Mamas Facing Forward – has helped me personally, by encouraging me through a very difficult second pregnancy where my RA flared while I was pregnant. Then, by the time I was ready for my third pregnancy (and, trust me, my last pregnancy), my group helped me find data on pregnancy-safe medication to share with my doctors. With my youngest, I stayed on medication so I didn’t have a postpartum RA flare, and I was able to breastfeed her on my own terms.
The women in my online group are my friends. We trade stories, share struggles, and watch each other’s babies grow. We help each other figure out how to keep facing forward, no matter what life or our own bodies may throw at us. These women are some of the most meaningful connections I have in my life – they are my virtual mom circle on the floor – and I have never even met them.
