By Lauren Edmiston
I can still remember the beginning—it’s my earliest childhood memory.
I was in the hallway of a house with my mom, my grandfather, and my brother when I started to feel weird, so I ducked into a walk-in closet to recover. Down on my hands and knees in the closet, the floor was caving in. I began falling in lightning speed, couldn't grab anything, and could only see bits and pieces of light. My surroundings were blurry.
I was a four-year-old girl simply exploring the hallway of a house. That first memory was, in fact, my first ever full-blown episode of vertigo.
I was taken to the hospital for my first of many tests and doctor's visits as a child. Vertigo was not on anyone’s radar, much less Ménière's disease for someone so young. I was misdiagnosed repeatedly, starting with potential brain tumors and neurological disorders.
The dizzy spells continued throughout my childhood and became normal to me. Waking up some mornings and not being able to get out of bed was normal. Not being able to function with tall ceilings was normal. Sitting at church knowing that if I stood up from the pew to take about five steps I’d have an episode was normal. That sensation that starts out much like an anxiety attack, a sensation that I’d feel through my entire body before suddenly spinning uncontrollably, was normal. But it wasn't normal. I advocate for that little girl today because now I know the truth. It was a hard journey learning that I was different.
I was homeschooled, so it wasn’t until around age eight when I realized that not all kids functioned like I did and that there was something "wrong" with me. I was determined to do things my friends did, like gymnastics and soccer. Yes, I did both. Yes, I fell on the balance beam. Yes, I fell on the field. But I kept going.
Adulthood is not easy with Ménière's disease. But childhood with Ménière's disease? It shouldn't happen. Ménière's disease was still not an option or even discussed because of my age. I was 10 when my mother's best friend was diagnosed with Ménière's and recommended a doctor at the ear clinic. My mother’s friend and I always had similar quirks, after all.
I went and, just like that, I was diagnosed—officially this time. Six years of being “just a little different" instantly explained. But also, just like that, there was the realization that not a whole lot could be done. It was not very common to be a child with Ménière's disease—in both ears.
I entered a remission phase at 19 and I'm now 26 with two kids. I still have Ménière's and I will never know what it's like to not be dizzy. I still experience the dreaded ringing and fullness. I'm still incredibly sound-sensitive and I still have days where I wonder how I'm going to get through it with my kids.
I tell my story for parents that might be going through Ménière's with their children. I tell it for people that read my words and can relate to every single one. You’re not alone. You’re not just sensitive to your surroundings. You’re not over exaggerating; you fight a silent illness, you navigate an alternate universe. Never stop fighting for a better quality of life.
But, also, remember to share your story with honor. If you can relate, you can help impact lives of people just like you and me.
Receive updates on life-changing hearing research and resources by subscribing to HHF's free quarterly magazine and e-newsletter.