The Good and Bad That Comes with Being a Parent with Rheumatoid Arthritis

It’s important to put any feelings of guilt into perspective when you’re a parent living with a chronic condition.

I thought my biggest life surprise was finding out I was pregnant at 6 months with my son Jacob. That was until my rheumatoid arthritis (RA) diagnosis.

I hadn’t even been a parent for 2 years before I was diagnosed with RA. As if it wasn’t already difficult enough adjusting to parenting — and adjusting to being a single parent — now I had to figure out how to do it while battling a debilitating chronic condition.

It didn’t take long for me to see that a chronic condition not only affects the person living with it but also their loved ones. Each year, I have seen the impact my RA has on my son’s childhood.

RA shattered my view of what kind of mother I thought I needed to be. None of this has been easy, and I often feel a tremendous amount of guilt and shame for not being the “perfect” mom.

But, I have to remember that RA has brought both challenges and blessings into our lives.

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Should I have known?

When my son was a baby, there were a lot of things I didn’t find easy. I’d see other moms do things with ease that I couldn’t without a struggle. I felt like I was failing as a mother.

Strapping him into his car seat or using any baby proofed devices with buttons and clasps was painful, because I did not have any strength in my fingers. Breastfeeding was also incredibly painful, so I formula fed him. This often came with judgment from others who didn’t understand my pain.

Lifting him became my worst nightmare. The pain was too much, and I felt so much guilt; the thing that was supposed to bring me so much joy was hurting me.

I hid a lot of my problems in shame, because I was not aware of what was really going on with me. I couldn’t figure out why it hurt to hold my baby, and I doubted anyone else would either.

I struggled immensely with postpartum depression after his birth, but I felt something more was wrong with me.

When I finally got my RA diagnosis, a lot of what I was struggling with made sense to me. But it wasn’t an easy explanation for everything.

Instead, I started wondering if I should have known what was happening? Should I have been a better advocate for myself and my son?

There were signs my pain was in need of attention before, during, and especially after his birth, but it took me a number of years just to get a doctor to listen to my concerns about my symptoms. This made me feel like I had failed to protect us both.

Receiving the diagnosis was immensely difficult, facing not only the ramifications of life with a chronic condition, but also placing further blame on myself for not recognizing the symptoms earlier.

Only with time did the diagnosis help me comprehend and re-evaluate what I was going through. But this took time and patience.

What feels like ‘the bad‘

I could write a laundry list of everything I find frustrating about being a parent with a chronic condition. These are just some of “the bad” that occupy my mind:

• I can’t always buy the things I would like to for my son, because I am on disability and we can’t afford many luxuries.
• We spend a lot of time at home.
• I worry my son gets too much screen time while I’m distracted by symptoms or appointments.
• I can’t play as long or as hard as him.
• Many dinners are ordering in or something that involves little effort, as I find cooking difficult.
• I can’t lift or carry him.
• I constantly forget things because, out of nowhere, I may get a flare or experience worsening symptoms.
• I have a compromised immune system, so I rarely attend school events or parties with him.

Those are some of the thoughts and concerns that constantly cross my mind as a parent with RA. I worry about how my RA is impacting my son’s life.

I worry that other parents may not understand my lifestyle or my invisible disability. It makes me sad that I can’t hide my son from my pain or struggles. When he gets sick or hurt, he sometimes asks me if his illness will last forever, like my RA.

The biggest struggle by far is the guilt that comes with all this. I am constantly battling with what I think a good parent or mother should be.

We are all different, and it’s important to remember the good

Even though my parenting comes with unique challenges compared with that of a parent without a chronic condition, my experience has given my son lessons that cannot be taught in school. There’s some good that outweighs the bad. For example:

• He shows others compassion and empathy, and being helpful has become second nature to him.
• He understands why I can’t work and why I can’t afford much.
• He knows the importance of spending time together.
• He’s very independent for a young age.
• He has a great understanding of the importance of eating healthy and exercising.
• He’s very in tune with his own body.
• He makes friends with kids who have disabilities and stands up against forms of discrimination.
• Disabilities that are invisible aren’t invisible to him.
• He loves volunteering with charities and helping those in need. He participates in fundraising events, like the walk for arthritis, because it promotes a cure for arthritis.

Those are just some of the blessings that RA has brought. Seeing my son care for others, with a strong sense of ethics and determination, makes me incredibly proud.

During the pandemic, he was not afraid of the COVID-19 vaccine and did not dislike wearing a mask because he said, “he wants to do his part to protect others”.

The good and bad are both important

With or without a chronic condition, everyone parents differently. My image of the “perfect” parent doesn’t exist — it’s only an image, and one that’s unattainable and unjustly gendered.

Reminding myself that everyone has their own challenges and parenting styles helps me keep any guilt and shame that I feel in perspective.

When I asked my son about my chronic condition, and how he feels my diagnosis has impacted our lives, he surprised me. He said he thinks our life is normal and he feels this is normal, though he does wish I didn’t have RA.

He’s correct: My chronic condition is part of our life, and this is also the case for so many other people across the country and world, with roughly 1.5 million adult Americans living with RA. Being able to recognize chronic conditions, that are often minimized, as normal is a beautiful quality that my RA has instilled in my son.

It’s taken me time to realize that this good is a consequence of “the bad.” The good cannot always exist without “the bad.” And while we both wish RA was not a part of my life, it’s important for us to remember its blessings, too.

Even though my chronic condition may cause me to feel like a burden or a bad mother, my son shows me every day that I’m not.