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“Mom, I hate the coronavirus, it is ruining everything.”
This is something my 7-year-old has been saying a lot lately. As a parent I try to shield my son away from the sourness life can give us, and that’s been an important role for me during the COVID-19 outbreak.
Being a parent means trying to shield your kids from the curveballs life throws you. My big lifechanging curveball was a diagnosis of rheumatoid arthritis at the young age of 29 and as the single mom of 2-year-old son. My son and I have been through a lot together. He has sat in countless waiting rooms with me. He’s met all of my doctors and therapists (mental, physical). He understands why I can’t work and grasps that my being on disability means we don’t have as much as other people do.
And as the rest of the world is furiously getting up to speed on virology, infectious disease, and public health knowledge, my son knows his fair share about medical issues for a 7-year-old who has only ever known a mom with chronic illness.
Explaining to a Child Infectious Disease vs. Autoimmune Disease
My diagnosis of RA has taught us a lot about infections through my lived experience with them — and an illness that doesn’t do well with them. I’ve had respiratory and pelvic infections that seriously affected me for a number of months. My son remembers having to spend weeks with his grandparents or father because Mommy was too sick to be near him or was too busy with doctor appointments and tests.
This time, though, he has to stay with me to make sure no one else gets sick.
Jacob knows that he can’t “catch” my RA by touching me. Now he, along with the rest of us, is learning that COVID-19, on the other hand, is highly contagious. That scares him, rightfully so.
He’s not seeing his Dad, grandparents, or friends, unless it’s through video chats or on those rare occasions when they drop off supplies and we keep our distance from each other. It’s important we stay connected while we must stay physically disconnected.
We’ve had to adjust our life suddenly and drastically in some uncomfortable ways.
We don’t leave our neighborhood, when before we would go on many adventures together around the city. I don’t drive and we are avoiding public transit, so our world has shrunk considerably. But I started to worry when I would ask my son if he wanted to go play outside and he started to say no — because he is hiding from the coronavirus.
When I explained social distancing and self-isolating to him, I told him it was like an extensive game of hide-and-go-seek — from other people’s germs. We are hiding at home now, with occasional times we can go outside. As long as we’re away from others, it’s OK.
The Added Wrinkle of RA Fatigue
The main challenge living with rheumatoid arthritis and being a parent is managing the disease with its whirlwind of symptoms.
Rheumatoid arthritis robs you of so much of your energy and your abilities. Guilt is often a huge issue for me as a single mom with RA. I just can’t do everything I wish I could do and what my son asks me to do. I know I try my best and we highlight that.
When there is so much darkness in the world right now, we are still shielded in these walls of our apartment, where Jacob and I remember we are not stuck at home but safe at home.
These walls shield us from the monster outside.
Now I have to be a second-grade teacher on top of all my other commitments and responsibilities, while feeling the stress of a pandemic and adapting and adjusting my arthritis self-care, hoping and praying I don’t go into a flare.
Part of me knows I will flare. I had to switch my biologic from an infusion I get in the office to an injection I give myself at home, so my last treatment was delayed. (My doctor’s office had to close because someone there became infected with COVID-19.) I’m much less physically active now than I normally am, and for me, going to the gym for the elliptical machine is a big part of my arthritis care. And hearing the news of thousands of people dying every day from a pandemic with no end in sight sucks the energy out of you.
It’s safe to say that motivation can be a struggle when you’re frozen with emotions of fear and sadness. I know not to compare myself to other mothers but to be influenced by others. We are after all in this together.
A New Routine
With my son normally in school I had six hours a day to manage doctor appointments, exercise, clean, cook, do part-time work as a patient advocate and freelance writer, pursue my hobbies, and take care of my health needs.
Back in the good old days, I could even nap when my body craved it, without being asked to Look At This or Help Me With That every five minutes. Did you know that young children ask approximately 300 questions a day?
I was really comfortable with those six hours mostly dedicated to my health. As much as I love every moment of being a mother, my RA symptoms have a schedule and mind of their own. My body and mind are not always on the same wavelength. Not every day with arthritis is the same.
When my arthritis is flaring, I want to be left alone, no matter who is around me. it’s just easier to get the rest my body needs when I’m flying solo. That can create a lot of guilt inside. Depression is a common and serious symptom that many with rheumatoid arthritis face. This pandemic is certainly resurfacing my mental health struggles.
Although, I guess on the other hand, my years of struggle with grief and loss have given me extensive coping skills in difficult times. I know to seek out the positives in these difficult times and sometimes just focus on the best you can do.
Creating a visual routine has helped me and my son with organizing all of our adjustments. Even before I had the added responsibility of being a distant-learning teacher, I would start my mornings by writing out everything I needed to do for the day because my rheumatoid arthritis can leave me very forgetful. Involving my son’s To-Dos in this daily routine making has proven beneficial in being able to juggle chronic illness and parenting.
This habit is definitely helping now. So is listening to my body and knowing I am doing my best when I can. My diagnosis of RA has shown me I can adapt well if I am persistent enough. That life lesson is coming in handy for myself now as I have become a homeschooling mom unexpectedly.
Asking for Help and Carving Out Community
I have in the past communicated clearly with my son’s teacher that I struggle with rheumatoid arthritis and explained how it affects me. Opening up that communication has given me help when I didn’t expect it, especially now. She understands I need to move at arthritic speed and our lives might be a little different than the families with two or healthy parents, or even one healthy parent.
Reaching out to other moms with chronic illness for advice or venting can uplift your spirit when you’re overwhelmed, lost, or confused. I recommend the Mamas Facing Forward group on Facebook. Even just lurking helps you feel less alone in your needs. And you might learn a thing or two from other moms. There are no stupid questions.
I am grateful for my friends in my community who recognize my special concerns during this pandemic as someone immunosuppressed. Their deliveries of healthy fresh groceries has been a lifesaver. I am grateful for the advances others in our community and globally are creating to keep us going right now, especially video, telehealth, and digital education services. I am extremely grateful for those on the frontlines during these difficult times.
Even with everything Jacob and I have endured together, navigating a novel pandemic was never something we could have fully prepared for. But living with RA has taught me to let go of life’s expectations. No one needs to be perfect in a pandemic.
These are unprecedented times. I know it is OK to not feel prepared for sudden life changes. I know I have to let myself experience the stages of grief we are all feeling. But I also know there comes a time when I have to pick myself up to keep moving forward. Not so much for me, but for my son.
He and I — along with all of us — are in this together.
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