Facing Forward Stories shares real stories from parents and parents-to-be living with chronic illness and disability—highlighting both shared experiences and unique journeys. Through these voices, we offer connection, representation, and encouragement, reminding readers they’re not alone and that there’s no single way to keep facing forward.
Sarah was diagnosed with rheumatoid arthritis while pregnant with her son, meaning chronic illness and parenthood arrived in her life at the same time.
She shares the challenges of parenting through pain and fatigue, grieving the decision to stop trying for a second child, and learning to build a full life alongside RA.
| NAME: Sarah PRONOUNS: She/Her LOCATION: Nova Scotia, Canada DIAGNOSES: Rheumatoid Arthritis CHILDREN: 1 son – 6 years old |
What came first for you: chronic illness diagnosis or parenthood?
I was diagnosed with RA at 15 weeks pregnant with my son, so my disease and parenthood arrived together. Talk about a big transition! I always held onto the hope that maybe my symptoms were pregnancy-related and would disappear after I gave birth. But here we are, more than six years later, still living with RA.
What have been the biggest challenges you have faced as a parent or parent-to-be living with chronic illness? How have you adapted to those challenges?
I think the biggest challenge I’ve faced has been finding a medication combination that worked well enough for me to consider having a second child. I spent two years in so much pain while we tried different medication combinations. Eventually, we grew tired of waiting for something to change when it might never actually change, and we decided it was time to stop trying for a second child.
I was heartbroken—and honestly, I still am. I think it’s something I will grieve for the rest of my life, even though I am deeply in love with the life and family we have. Both things can be true at the same time.
What does a typical day look like for you and your family? Are there specific tips or systems that help your family function day-to-day?
I’m lucky that the medication combination I’m on now allows me to function pretty normally from day to day. My husband is a pilot, so it’s not unusual for me to solo parent in the mornings and/or evenings, sometimes for longer stretches. Things are much easier now that my RA is under control, but when my son was small and my disease was more active, even basic childcare tasks could be incredibly challenging.
I remember everytime I had to give my son a bath I would feel so much anxiety because I knew how much pain it could cause. One time, I called my sister to help calm me down after lifting my son into his high chair sent my shoulder pain to a 10/10 during a flare. Those are the kinds of moments that people don’t necessarily see when they look at a parent living with chronic illness.
My biggest tip is to keep moving, incorporate regular exercise—especially strength training—and be intentional about rest. Learning how to balance movement and rest has become a really important part of managing my RA, and it’s something I share through my Instagram account.
How do you talk to your children about your illness?
I explain to him that Mommy’s joints don’t work quite as well as his do, so I take medication to help me feel better and be able to play with him. I try to expose him to all of it in an age-appropriate way and answer his questions as they come.
What kind of support has made the biggest difference for you?
I’m incredibly lucky to have a really good circle of people around me who have supported me throughout this journey. Having people I can call when I’m struggling—whether I need practical help, someone to listen, or just someone to remind me that I’m not doing this alone—has made such a difference.
I’m also finding that sharing my story through social media has been highly therapeutic. Taking the time to write down my experiences has allowed me to see my journey through different eyes, and I’ve definitely learned to give myself more grace along the way. I think sharing your story—whether with others or simply by writing it down in a journal—can be a really powerful tool for developing self-compassion and learning to support yourself. The community of people living with chronic illness on social media is an amazing place, and finding that community has made me feel much less alone in my experience.
What is something you wish more people understood about parenting with chronic illness?
The fatigue. When you overdo it, it can hit so hard that you literally have no choice but to lie down—your body forces you to. It’s wild.
And then there’s the fact that you rarely feel truly refreshed when you wake up in the morning. I’ve never really been a morning person, but mornings with RA are a whole different ball game. Sometimes the best it gets is, “I don’t feel brutally exhausted this morning, just mildly exhausted!”
I think it can be hard for people to understand how different that level of fatigue is from simply being tired. And when you’re a parent (and working full-time), you don’t necessarily get to rest just because your body is telling you that you need to.
If you could go back to the day of your diagnosis, what would you tell yourself?
Before I said anything, I would give myself the biggest hug and tell myself that it’s okay to be scared, but that everything is going to be okay. Although the diagnosis feels like a life sentence right now, you will learn to live with this disease. And one day, you will go on to help other people through that experience.
I would tell myself that we will still have a beautiful life, despite the cards we’ve been dealt.
What does “facing forward” mean to you?
Facing forward, to me, means accepting my diagnosis without believing that it means I can’t still achieve new things and live a good life. The things I can do today—hiking, jogging, strength training, playing soccer with my son—were things I hoped and dreamed I would be able to do again one day when I was first diagnosed. Now it’s on to the next challenge and the next dream.
My body will never be the same as it was before my diagnosis, but I can find a way to move forward and live a great life alongside my RA.
Here’s where you can connect with Sarah online!
- Instagram: @rheummovementlab
| 🌿 Facing Forward Moments: Sarah’s Recent Parenting WIN! 🌿 A |
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