Most people that imagine having children don’t imagine doing so while suffering from chronic pain or illness. Unfortunately, life circumstances can change and leave parents feeling incapable or inferior while trying to raise children while suffering themselves. Parenting when you live with a chronic pain condition or chronic can be more difficult and stressful than regular parenting for obvious reasons. As I know all too well, this involves trying to serve your child’s needs while also balancing your own physical pain and needs. You often have to sacrifice one for the other.
I have chronic foot pain so I am forced to live a primarily sedentary life, limiting my standing and walking. The only thing that alleviates my pain is opioid medication and due to recent policy changes, I’m on the bare minimum of dosages. I’ve tried everything else you can imagine, including acupuncture, physical and mental therapy, and different types of drugs, such as gabapentinoids for nerve pain and antidepressants (see my back story here on What I Wish My Family Knew).
I can walk my son, who is 3, from the car to his daycare classroom but I cannot, for instance, stand around and talk to parents or teachers. I miss out on fun activities too, like taking walks in the woods, chasing my toddler around a playground, and going to the zoo. It is personally heartbreaking because we both love animals and I want nothing more than to be able to walk around our local zoo, which is not gigantic, look at all of the animals and teach my son about them.
He got hurt at school recently, requiring a trip to the hospital in an ambulance to get stitches. I couldn’t carry him from the ambulance bay to the pediatric ER wing; instead, I had to ask to the EMT to carry him, which was devastating because I felt like I was failing my son during his time of need. He needed me, and I handed him to someone else. I can’t put into words how terrible that felt.
Living with chronic pain and having to parent in this manner challenges me every day – it is mentally, emotionally, and physically taxing. In recent weeks, I have been thrown into a world that I never imagined could exist, or that could actually be worse. With the entry and spread of the new coronavirus and COVID-19 into the United States, I am now facing the same situation every other parent is facing – that is, homeschooling my child. In addition, my already pretty isolated, immobile life, has become more sequestered.
I decided to dig into the research around parenting during “normal” times to see just how my thought process aligned with others. According to the most recent parenting survey by the Pew Research Center, overwhelming majorities of parents shared that being a parent is “tiring” or “stressful” at least some of the time. Yet, a majority said that being a parent is extremely important to who they are as individuals. Responses were taken when the world was seemingly routine, and the likelihood that many parents responding to the survey lived with chronic pain is low. In a separate study, researchers at Kent State University in Ohio reviewed the scientific literature to see how children are affected when their parents are in chronic pain and the results were upsetting. Their analysis showed that children whose parents experience chronic pain are at increased risk for adjustment problems and behavioral issues and are more likely to complain of pain themselves. Basically, the whole family suffers. Another scientific review of 59 studies and articles validated the Kent State study, showing that the children of parents with chronic pain may be at risk for “poorer outcomes” than the children of healthy parents. Specifically, the reviewers noted that, “Offspring of parents with chronic pain had greater externalizing and internalizing problems and poorer social competence and family outcomes.”
And now, here we are, formally practicing social distancing and living in cities and states that have declared official lockdowns, with even less access to doctors and services that can help with pain and with mental health. I can only wonder what similar research would demonstrate today, or a few months from now.
When my son’s daycare announced a temporary but indefinite closure, I asked my pain management specialist for additional medication to help me get through this period. For instance, I need to lower my pain level in order to take walks with my son—as a preschooler, he needs the daily exercise and outdoor time to stay emotionally and physically healthy. Sadly and shockingly, my doctor refused. He wouldn’t even speak to me on the phone. It was devastating to be denied support at such a difficult time.
Ironically, I even had a new diagnosis to support an increase in meds. My new podiatrist ordered EMG testing, conducted by a physiatrist, which revealed that I am suffering from complex regional pain syndrome (CRPS), a condition thought to result from nerve damage.
So I am facing full-time parenting of a toddler, homeschooling, and relentless pain on my own. Typically I would have some support from relatives and/or have a few hours a day to recharge my body when my son is at school. My one saving grace is that my son still takes afternoon naps, so I use that time to lie down and ice my feet.
I have tried to follow the lead of other moms who created brilliant spreadsheet-style schedules of activities to keep their kid(s) busy and engaged throughout these trying days, but I quickly discovered that all of the activities would require me to be on my feet, the source of my chronic pain.
My next step was to research activities for 3-year-olds that involve sitting and I am happy to report that we are working with arts and crafts, clay, puzzles, board games, and reading. But these things can only take up so much time and my son has the attention span of a hummingbird. And these activities still create work for my feet, in the form of cleaning up the messes. This is in addition to the foot time I spend managing the household, and doing most of the chores, such as laundry and dishes, because my husband is still working at an “essential” business.
One thing I have resorted to is TV. Sooooo much television! As any parent knows, even kids that normally have short attention spans will watch a screen for hours on end. I’m letting my son watch an enormous amount of cartoons and movies because it allows me to stay off my feet. I am enjoying the cuddling and bonding over our favorite shows. I even learned from the American Pediatric Association that if we discuss what we’re watching, it’s considered “co-viewing” and can enhance learning.
But that doesn’t mean I feel comfortable with my son watching TV for the majority of the day. In fact, I hate it in the same way that I hate how my chronic pain affects my ability to do things with my son on a regular basis.
So, with less than three weeks under my lockdown belt, I’m a huge stress ball! I feel hugely inferior as a parent during this pandemic because I am unable to go for walks or help my child ride his scooter or even coordinate and set up activities that require me to stand. I feel like I’m not doing enough, playing enough, or providing enough stimulation and exercise. I wake up nightly to thoughts around his intellectual growth. What if I’m limiting him? Will he be as smart as his classmates when daycare resumes?
Every article I’ve read about life in the time of COVID-19 lockdowns has stressed that this is new territory for all parents to navigate. Jennifer Burleson, MSW, LCSW, a maternal mental health therapist, suggests that parents be compassionate with themselves and be mindful of relaxing any unrealistic expectations we may put upon ourselves during these unusual circumstances. It is my opinion that parents with chronic pain have to be even more compassionate with ourselves because we have physical limitations. The lack of breaks and social support that comes with social distancing and homeschooling brings a new set of challenges.
Looking ahead, I hope to stay in touch with friends and family using FaceTime and a new phone app called Marco Polo, which allows loved ones to send each other videos on your own time. The contact, even though virtual, should help me to feel a bit less alone. I also joined a chronic pain online support group to see if it helps in any way. I’ve asked my husband to come home for lunch when he can or to at least check in via text with me more than usual.
Without additional pain meds or support from hired help or family, I’ve decided that the best strategy is to do the best that I can and that this will have to be enough for me and for my son. He is happy and loved and that’s what matters the most.