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.
Nicola C’s Story
What is your specific diagnosis (or type of chronic dizziness), and how old are your child(ren)?
I have Meniere’s disease and vestibular migraine, which is currently episodic with periods of remission between flare ups/attacks. I have a four-year-old daughter
What is a “dizzy parenting hack” or tool you rely on to get through the week?
I got comfortable with saying no to things that felt too much, so if I have days where I’m struggling, I am happy to rearrange plans, cancel an event, or decline an invite. Listening to my body has been pivotal in managing my fatigue and regulating my nervous system.
How do you talk to your children about your dizziness in a way they can understand?
I have always talked about my dizziness to my daughter. I want her to know that illness is a part of life that deserves kindness and understanding, not something to be feared, so I use simple terms to explain what is happening: that my brain and ears aren’t working as they normally do, or as someone else’s might. I explain in language she can comprehend what is happening when I am having symptoms and how they are making me feel, and I give her the chance to ask questions. Although she is very young, she shows an empathy way beyond her years and often asks me if I need water or a lie down to rest when I say I am feeling dizzy. The honesty and transparency regarding my diagnoses have helped her to have understanding when I am unable to partake in activities or when we have to have a house day. I’m proud of her attitude towards my illness, and my hope is that by having these conversations she continues to grow and lead with empathy when she comes across others who are struggling.
What has been the most challenging or surprising emotional hurdle of parenting with an invisible illness?
The fear of not being able to be the mum I usually am, or want to be, when my symptoms are bad. Having to rely on everyone else to provide her with everything she needs when I am bedbound is incredibly hard, because although she understands what is going on, at times like bedtime she just wants mummy. Hearing my child crying for me when I am not able to get to her is very upsetting.
What is a moment where you felt incredibly proud of yourself as a parent, despite your symptoms?
I feel proud every time I look at my daughter, every time I hear her talking so nicely to others, every time I see her showing empathy and kindness, because these are the qualities I have tried to nurture within her. I might not be able to do ‘big’ activities or lots of days out, but seeing her develop those core qualities through how she is parented brings me immense pride
How did finding an ally network or a support group (like the Dizzy Moms Club or VeDA) shift how you view your diagnosis?
Finding The DMC was a real cornerstone for me. Before I found The Dizzy Moms Club, I was in a very dark place with my illness; I felt completely isolated, terrified, and, despite fantastic support from my family, I felt I had nowhere to turn to people who TRULY understood what I was going through. I used to fear my illness; I used to wait in anxious anticipation about the next flare-up, but being a part of The Dizzy Moms Club community has completely changed my perspective. I feel so much less alone, so well supported, and hearing people say ‘I get it’ truly is life-changing. It has given me so much acceptance of my condition and has enabled me to turn something desperate into something I am now using to help others.
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?
When I first had symptoms 22 years ago, aged just 16, I was completely alone. I didn’t know anybody else with my symptoms, and nobody even knew what the word vestibular meant. There was one in-person support group I attended, and I was the youngest by over 20 years. I struggled to find any resources or research that was beneficial, and the only other support groups I would come across as years went by were full of despair and negative comments. The DMC is about connection, support, and lifting each other up; and it is a beautiful thing to be experiencing after years of heartache and desperation.
To another dizzy parent, I would say don’t compare yourself or your parenting journey to anyone else; your child/ren love you exactly as you are. They do not know the world outside of what we give them and to them, what we give them is all they want and need. You are not alone.