Parenting with Chronic Illness

I definitely don’t need to tell anyone that parenting is often difficult. There’s no sugarcoating that. Anyone who’s done it, or even taken care of a child for an extended period of time, knows how challenging and exhausting it can be, to say the very least.

But what happens when you are a parent and also dealing with a chronic illness? (Especially an illness like rheumatoid arthritis, whose hallmark symptoms of pain and fatigue don’t really pair well with raising a young energetic son all by myself.) Well, parenting does become even more of a challenge when you are fighting debilitating symptoms that pop up at the most inconvenient of times, especially when you need to be a reliable parent.

After many tears, frustration, and trial and error, I’ve slowly gotten the hang of being a single mom with rheumatoid arthritis. I was diagnosed with RA at age 29, when my son Jacob was a toddler. Now I’m 34.

First, a disclaimer: I’m nowhere near perfect and learning more and more every year. But here’s a list of what helps me survive being a single mom with rheumatoid arthritis.

1. It’s okay to put yourself first at times

It’s the old oxygen-mask-on-a-plane adage. You can’t take care of someone else until you take care of yourself. As a parent with health issues, you can not run on empty.

I can’t stress how important self-care is when living with a chronic illness. When I fall off my self-care, it seems like everything else around me seems to fall apart too. Self-care is different for everyone, but I like to define it broadly. For me, it’s not just “relaxing” activities like taking a bath, but making sure I exercise regularly and eat nutritious whole foods. It also involves keeping up with my treatments and many doctor’s visits, and resting. Plus, whatever activities makes me happy and feel like myself.

2. Remember that your kid will mirror you (and this is good and bad)

One of the biggest highlights of the health transformation I underwent since getting diagnosed with RA was my son giving exercise a try. He told me that he understood why I work out so much because he felt amazing after it. He’s turning into such a health-conscious, smart little guy who has skills to take care of himself. Skills that I didn’t really have when I was younger.

I volunteer a lot with different arthritis organizations in my area (I live in Vancouver in Canada) and I often bring my son with me. Now he loves to be involved in charity events and appreciates the importance of giving back to his community. His teachers have commented about him being kind and sticking up for other students who tend to get bullied for their differences.

The downside of this mirroring, however, is that my kid uses “I’m tired” as an excuse to not do things far too often … because I say it a lot. He has enough energy to play, for instance, but curiously not enough energy to do his chores or homework. Part of me is terrified that this could be a sign that he’s developing a form of arthritis as well, but the other part of me knows he’s just trying to get out of what I asked him to do.

3. Lower your expectations

Life became a lot easier and happier for me when I started to let go of expectations and accept whatever comes my way, each mess at a time. I often remind myself that there will be bad days (and plenty of them) but there will be good days that make those bad days seem insignificant. That’s part of life, whether you’re a parent or not.

4. Stay organized, develop a routine, and pace yourself

Having a chronic illness like RA means I often have fatigue and brain fog. I’ve learned to write everything down. I try to keep usual dates and times for appointments so I don’t forget them or need to worry about checking my schedule if someone asks me for something. I’ve found it incredibly useful to develop a daily routine — albeit with wiggle room for unpredictable symptom overloads or unpredictable children.

Over time, I’ve learned that I can’t pack as much into one day as someone without chronic illness. I have to spread things out in the week to not overwhelm myself. I stick to around three to five “big-ticket” tasks a day. This can include shopping, cooking, cleaning, or going to an appointment.

You will eventually know what you can handle in a day and how much rest you require after a given activity. Tracking my health with a fitbit and RA app helped me understand a lot of my flare triggers and fatigue patterns.

5. Keep things simple whenever you can

Before I had RA I was definitely more social and quite the hostess. Now I keep things small and simple because adding too much means I can’t enjoy myself. (Granted, we’re not doing much socializing now because of COVID, but you know what I mean.)Before RA I would probably bake the cake from scratch, make the decorations by hand, and do everything else. Now I buy more storemade items or order in food to conserve my energy and avoid pain.

6. Do meal prep and cook in batches

This will save you money and time and help you avoid needing to cook every single day. I have a list of simple healthy meals printed out on my fridge for those high fatigue and brain fog days to give me some guidelines on what to put together. Also, it’s okay to have snacks or breakfast for dinner if you don’t feel well enough to put together an elaborate meal. Just try to eat as many fruits and veggies as you can. If you just can’t cook for a day (or two or three), there is no shame in ordering in.

7. Messy is okay. Late is okay too. Bending the rules happens.

No one is expecting you to be perfect — and if they are, give them a reality check that no one (including them) is near perfect. If you need to distract your kid with “too much” screen time because you’re having a bad fatigue day or you need to drag them to appointments with you instead of them having a fun playdate, so be it. It’s not the end of the world if they spend more time watching Paw Patrol than creating crafts or reading together.

8. Teach them how to do chores and help

I have my son do chores along with me, like folding and putting away the laundry or taking out the garbage. He helps me pick things up off the ground or grab things for me. Not only does this teach him how to do things for himself, but it also helps me tremendously when it comes to doing the actual chores. It also makes things more fun to have a little buddy with me.

9. Communicate with others in your child’s life

I’ve told my son’s teachers about my illness and how it affects me, thus affecting my son in some ways too. I found this really helped me out when it came to his schoolwork. His teachers have often offered extra help for him to make things easier for me, and I couldn’t be more grateful for it.

10. Don’t compare yourself to others

So what if Lisa down the street can get her three kids on time to soccer practice and work full-time while making comments about how tired you look? What matters is you and your family, and what works best for your household. Screw Lisa. Focus on yourself and your family.

11. Let go of guilt

My son reminds me to not blame myself for what I can’t do because I am chronically ill. It helps me feel an incredible amount better when that nagging feeling of guilt consumes me some days. I definitely can’t just turn it off but I remind myself that negative self talk does me no good. I know I am trying my best.

12. Ask for help

There is no shame in asking for help of any kind, whether it be for cleaning your house, running some errands, cooking, or maintaing mental health. Find out what social support you can get and take it. If you need help, ask around. No one knows what you need unless you ask.

Be a More Proactive Patient with ArthritisPower

Join CreakyJoints’ patient-centered research registry to track your symptoms, disease activity, and medications — and share with your doctor. Learn more and sign up here.

  • Was This Helpful?