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.
AT’s Story
What is your specific diagnosis (or type of chronic dizziness), and how old are your child(ren)?
Migraine-variant balance disorder / vestibular migraine and regular migraine. I am currently dizzy 24/7, but have also had periods where it was in remission or episodic. I have a 12-year-old.
What is a “dizzy parenting hack” or tool you rely on to get through the week?
Pacing is something that has helped me a lot. When I’m with my son, I alternate activities that require me to be physically active with quieter activities where I can lie down, such as reading together, playing a card game, writing a story or watching something together.
How do you talk to your children about your dizziness in a way they can understand?
Talking to my son about my dizziness is important to me. I grew up with a mum who had regular migraine attacks and still remember how scary I found them as a child. There was less information about migraine at the time and treatment options were limited. I try to explain in simple terms to my son what migraine is and how the dizziness affects me, what limitations I have and that I need to rest regularly. I want to make sure he knows it’s not something dangerous and that we can talk about it openly. He knows he can ask questions. Now he’s older, he also knows how to entertain himself for a while when I rest. It has been a learning curve for us both, but I believe that having a parent with a disability has helped my son develop certain life skills and more empathy. He loves to help me with house chores and gardening for a bit of extra pocket money!
What has been the most challenging or surprising emotional hurdle of parenting with an invisible illness?
The most challenging for me has been managing my energy levels. Being continuously dizzy affects my energy levels and for several years I also had chronic fatigue.
I’m a single parent and although I have shared custody of my son, when he’s with me, I don’t have a partner to fall back on.
Learning to pace myself has been key. Before becoming dizzy, I was used to pushing myself. I found it hard to allow myself to rest much. Being dizzy has taught me to treat myself with care and gentleness. My fatigue levels are a lot more manageable now.
What is a moment where you felt incredibly proud of yourself as a parent, despite your symptoms?
There hasn’t been a specific moment, but over the years I have learned to trust myself that I am able to parent even if dizzy, and provide what my son needs. There is a quiet pride in this – in discovering strength and resilience in myself that I didn’t know I had.
How did finding an ally network or a support group (like the Dizzy Moms Club or VeDA) shift how you view your diagnosis?
Support groups have helped me massively. Connecting with other dizzy people has helped me grow more accepting of my chronic health condition and feel less isolated. It has made me more resilient, and more able to cope with the challenges of living with chronic dizziness and headaches.
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?
Most people have never heard of vestibular disorders, and struggle to understand how they affect us. I think advocacy is important for us as a community, especially as dizziness is an invisible disability.
To another parent who is currently suffering alone, I would like to say that they are not alone in this, that there are many other people walking the same path, and for them to reach out and connect with other dizzy parents. I would also like to encourage them to treat themselves with kindness and gentleness, as the path is a rough one. I hope that they can be proud of the parents they are. Being dizzy changes the way we parent – I think so many of us have had to confront grief and feelings of guilt around this – but we learn to trust over time that even if the dizziness has changed how we do some things, we are still able to show up as caring, present and loving parents.