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.
Ashley’s Story
What is your specific diagnosis (or type of chronic dizziness), and how old are your child(ren)?
My current diagnosis is PPPD and vestibular migraine. I first experienced vertigo in 2018 when my children were 11, 10, and 4 years old. They are now 19, 18 and 12 years old and I’ve been on this journey for 8 years.
What is a “dizzy parenting hack” or tool you rely on to get through the week?
I have many different tools I use to help keep me “grounded”. I carry ice water and minty gum with me everywhere. When I’m in the car and not feeling good, I blast the air conditioning on my face. I always take a grocery cart with me in the store, even if I’m just running in for one item. I have learned over the years that good sleep is vital. If I don’t get good sleep, my symptoms are worse the next day. So I go to bed at the same time every night, and my kids know not to wake me unless it’s an emergency.
How do you talk to your children about your dizziness in a way they can understand?
When they were younger, I would describe it like a tilt-a-whirl, an amusement park ride we have here. It spins you around and around and it’s hard to focus on anything because you’re spinning. You feel dizzy and nauseous. And because I sometimes feel that way, it may not be safe for me to walk around or drive places. On those days, mom needs to rest and everyone needs to be quiet.
What has been the most challenging or surprising emotional hurdle of parenting with an invisible illness?
Mom Guilt for sure! Sometimes you may have to miss a game or a recital because you don’t feel well. It hurts our hearts to miss out, but we have to take care of ourselves. Parenting with an invisible illness is exhausting, I feel like we are always trying to act like we are okay, even though we aren’t.
What is a moment where you felt incredibly proud of yourself as a parent, despite your symptoms?
Traveling has been difficult for me, and my daughter was accepted into a college 6 hours away. I had never been in the car that long since getting sick, but I was able to make the trip (with lots of stops!) and move my daughter into her dorm. Shoutout to The Dizzy Mom’s Club for giving me some great tips before I made the trip!
How did finding an ally network or a support group (like the Dizzy Moms Club or VeDA) shift how you view your diagnosis?
This diagnosis can feel very isolating. Most people don’t know what a vestibular system even is, and trying to explain your diagnosis, symptoms, and limitations can be difficult. I’m sad other people suffer with a vestibular disorder, but there is comfort in knowing that I am not alone.
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?
Having an international advocacy day for dizzy parents brings awareness to our cause. We have an invisible illness, but it doesn’t have to be unknown. For anyone suffering alone, I would say DON’T GIVE UP. Once you find the right doctor and the right treatment, things will get better. It’s okay to feel sad or beaten down, but don’t stay there. Get up and keep fighting. Lean on your friends, your family, and your faith to get through this. You are not alone.