I’d already lived with chronic migraine, thoracic outlet syndrome, and occipital neuralgia for seven years. When I learned I was pregnant, I knew my pain would affect my parenting, but I didn’t realize just how significantly.
I remember one night in particular so vividly when my son was just a couple months old. It was around 3 a.m., and I couldn’t lie down. I couldn’t move around. I couldn’t watch television. I couldn’t read. I just was.
I knew my baby would soon wake and need me, but the problem was I didn’t know how I would even physically manage to hold him.
I had the most intense migraine of my life. The pain was so bad I was shaking. My vision was blurry, and I could only manage silent tears because any movement or sound I made exacerbated my agony. I longed for dawn to end that dark night, certain that morning would never arrive. But both literally and figuratively, it did.
Since that night, I’ve understood the significant burden that parenting with chronic pain can entail. Here are a few things I’d like other mothers with chronic pain to know:
1. You aren’t alone.
Pain is a subjective experience, unique to each individual who suffers through it. Since pain is so uniquely personal, living with a chronic condition can be isolating. Unfortunately, the odd sleep schedules and physical demands of parenting can lead to even more loneliness.
When you’re both a new mom and a mom in pain, you can sometimes feel utterly, hopelessly, inconceivably alone — even when you’re lucky enough to have a strong support system.
The good news is you’re not alone ― even if it feels that way. In fact, in the United States, 45 percent of the population has at least one chronic illness. In the U.K., chronic pain affects nearly half of Britons.
2. You don’t have to parent the same way other parents do.
The Internet’s endless wealth of information is an empowering tool, but it can also be a curse when you’re a scared, new parent trying to sort through so many competing voices telling you what is best for your child.
The Internet is also a sounding board for some of the most confident and cruel know-it-alls who will convince you, at one of your most vulnerable times, that you are the world’s worst mom if you don’t prescribe to x, y, or z style of parenting.
Few parenting topics are shrouded in as much debate and controversy as how we feed our babies. Some moms find breastfeeding easier because they can sit and rest while the baby feeds. Others have conditions ― like mine ― that can make holding the baby for so long difficult, even when lying in a laid back position. Choose what works best for you and your child.
Parenting critics are not living through your pain and suffering. Only you can know what is best for your individual situation, your health condition, and your unique baby.
3. You don’t have to parent the way you would if you weren’t in pain.
We all have things we wish we’d done differently. We can’t always change our circumstances, but we can adapt our parenting to best fit our challenges.
Before I had my son, I read so much about the benefits of babywearing. I’d internalized the voices of online babywearing advocates who convinced me the practice was essential to good parenting.
Then one day I took my son to the grocery store, and I wore him in a baby carrier for the entire trip. It was a beautiful day, he slept peacefully against me and I was able to get all the shopping done while keeping him close.
Unfortunately, the day did not end so beautifully. I spent that night experiencing one of the worst pain flare-ups of my life with lightning-like pain stabbing and shooting into my face until I was incapacitated with pain. I knew I shouldn’t use the carrier again, so from then on, I kept my son close to me in a stroller where I could smile at him, talk to him and watch his facial expressions as he discovered the world around him. The stroller allowed me to keep my son close ― and protected me from future pain, too.
We all have things we wish we’d done differently. We can’t always change our circumstances, but we can adapt our parenting to best fit our challenges.
4. Let go of the guilt.
If there’s one word I’ve heard repeated again and again in the parenting with chronic pain community, it’s guilt. After I had to stop babywearing, I felt so much regret that I couldn’t parent exactly the way I wanted to.
I wish I’d been more flexible in understanding that my preconceived ideas of what good mothering looks like had to shift to accommodate my health. If I had understood that sooner, I would have suffered through a lot less guilt.
5. Accept help whenever you can.
Unfortunately, some mothers don’t have a spouse or other loved ones to help them parent. But even the mothers who do have a support system can feel an undue sense of responsibility to be the sole care provider for their child.
But it’s OK for someone else to help with infant feeding while you rest. It’s OK for a trusted loved one to get up with your child in the night. It’s OK for your family member to assist with housework.
Let yourself rest whenever possible.
6. There are sometimes resources that can help.
For many parenting with illness challenges, there are great resources, but unfortunately, they can be hard to find. Infant feeding was one hurdle I had to overcome when my son was a newborn, and I was coping with chronic pain.
I didn’t fully understand which medications I could take while breastfeeding. Since he was so dependent on nursing for comfort, I tried to manage my pain without any meds, which caused a lot of unnecessary suffering on my part. Once I met with my hospital’s lactation consultant, we were able to figure out a more viable plan that allowed me to start on safe medications without forcibly weaning him.
If you’re also trying to balance breastfeeding and managing chronic illness, there’s also the Infant Risk Center at Texas Tech University Health Sciences Center, which provides some of the best guidance and most up-to-date research on medications and nursing for no cost. For moms who opt to formula feed, Suzanne Barston’s Fearless Formula Feeder site offers a wealth of support.
If you need additional help managing a chronic illness and parenting, some psychologists specialize in helping people with chronic pain. Many doctors can recommend therapists with whom they know their patients have had good experiences. The Psychology Today website provides a searchable directory, too.
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Although much of what I’ve mentioned here relates to parenting an infant, many of these principles — letting go of guilt, allowing yourself to rest, understanding how your parenting might be different as a result of your condition — applies universally to all moms.
What would you add to this list?
A version of this post originally appeared on the blog Mothering With Chronic Pain. Follow Mothering with Chronic Pain on Twitter or Facebook.