Welcome to a special patient spotlight series in celebration of Dizzy Parents Day, hosted by the Dizzy Moms Club in partnership with VeDA. By sharing these real-life journeys and practical ‘dizzy parenting hacks,’ our goal is to help parents navigating chronic dizziness find their way out of isolation and into a supportive village. Each feature highlights the voice, vulnerability, and inspiring resilience of a parent navigating an invisible vestibular disorder.
Careen’s Story
What is your specific diagnosis (or type of chronic dizziness), and how old are your child(ren)?
VM and PPPD. My boys are 12 and 14 now. They were 7 and 9 when I first started experiencing my vestibular symptoms.
What is a “dizzy parenting hack” or tool you rely on to get through the week?
Being honest with my family about needing help. I don’t have to do it all. I can put my pride aside. I’ll tell them Mom is having a dizzy day, and everyone knows I need the extra support.
How do you talk to your children about your dizziness in a way they can understand?
It took me a while to open up to them about what I was going through. I wanted to shelter them. But they noticed, and once I opened up, I gave them the opportunity to help me and to learn about what I was going through. I didn’t know how much I needed them as my cheerleaders and motivators. I told them about the vestibular system using the correct terms, how it made me feel, and that I can still do many things, but I just have to adapt and adjust. I will tell them it’s a dizzy day today, and they’ll know right away to be a little extra mindful and compassionate, and they will always cheer for me and say: ”Mom, you did it even if you’re dizzy!”
What has been the most challenging or surprising emotional hurdle of parenting with an invisible illness?
For me, it was definitely grieving the parent I was before the vestibular symptoms. And the most surprising part was how much of the struggle happened quietly. It was not just the dizziness, the imbalance, or the unpredictable symptoms — it was the pushing through, the guilt, the fear of missing out, the worries, the uncertainty….
But over time, I realized that my children simply needed a parent who keeps finding ways to be there for them. I learned about planning and pacing, about adapting and adjusting, asking for help and being creative. My love was still the same – that hadn’t changed; that never wavers.
What is a moment where you felt incredibly proud of yourself as a parent, despite your symptoms?
When my boys graduated from primary school. My oldest won the citizenship award for being kind, reliable, and empathetic. Then 2 years later my youngest was class valedictorian. I cried such happy, relieved tears at those moments. I remember those days I was housebound and so worried about how my health issues would affect my boys. My support system kept telling me they would be alright and that children are resilient and that I was doing everything I could for them. At their graduations, I finally saw it. I thought of all those hard moments of showing up despite the dizziness and trying to keep things steady for them despite how unsteady I felt and all those worries and all that mom guilt…
How did finding an ally network or a support group (like the Dizzy Moms Club or VeDA) shift how you view your diagnosis?
I no longer felt alone. I found my people. I didn’t even realize how much I needed the support. I remember how much I cried when I got off my first support group call. I remember how connected I felt when I hosted my first support group call with The DMC. The validation, the support, the care, the coping tips, the connection, the community, the resources, the understanding, the friendship…I get so much out of being part of The DMC and am so grateful. I always think that if I had joined a support group earlier in my journey, the first year would have been so different for me. I had all the management tools in place, but the connection piece was missing, and it changed the trajectory of my journey in such surprising and invaluable ways. It also gave me purpose. It made me realize that I wanted to help others feel less alone and feel understood. I wanted to raise awareness. I wanted to reach out to others and be that person I so desperately needed at the start of my journey.
Why is an international advocacy day like Dizzy Parents Day so important to you, and what message of encouragement would you send to another parent who is currently suffering alone right now?
A day like Dizzy Parents Day is so important because it reminds us that no parent should have to navigate chronic vestibular illness in silence, on their own. So many dizzy parents are carrying an invisible burden every single day – the double load of juggling parenting and juggling symptoms.
This day makes me feel like our experiences are recognized, our struggles are validated, and our strength is celebrated. It’s a way to make the invisible visible and to raise awareness.
I would say to the parent who is navigating parenting dizzy that I want you to know that you are not alone. There is a whole community of parents who understand the invisible weight you carry. We see you. We believe you. Your struggle is real, your love is powerful, and even on the days when you feel like you are barely holding on, you are still giving your children something priceless and steady: your presence and your love. And your children are learning valuable lessons, and they will be OK. Don’t be afraid to be your own biggest advocate, motivational speaker, and cheerleader. There are many coping strategies you can use, and you will have many good days along the journey. The vestibular community and The DMC will always be in your corner, and soon enough you’ll be saying it with us: “Don’t quit, do it dizzy!” and “Dizzy or not, here I come!”