4 Things I’d Like People to Know about Living With a Balance Disorder
This week is Balance Awareness Week, the time of year to bring attention to all things balance problems, including balance loss, vertigo, and dizziness.
Balance disorders, also known as vestibular disorders, are conditions that make you feel unsteady, imbalanced, or dizzy. There are various types of balance disorders, each with its own set of symptoms.
Some common symptoms include the following:
Dizziness or vertigo (a spinning sensation)
Falling, or feeling as if you are going to fall
Staggering when trying to walk
Lightheadedness, faintness, or a floating sensation
Sensitivities to light and sound
Blurred vision
Confusion or disorientation
Experiencing these symptoms can make movement challenging and affect your confidence when participating in outdoor activities or environments with a lot of visual stimuli, bright or flashing lights, and loud noise.
I am living with 2 balance disorders: Meniere’s Disease and Vestibular Migraine.
The Meneire’s Society defines Meniere’s Disease as follows: “A long-term, progressive vestibular condition affecting the balance and hearing parts of the inner ear. Symptoms are acute attacks of vertigo, fluctuating tinnitus, increasing deafness, and a feeling of pressure in the ear.”
Vestibular migraine may involve vestibular symptoms like vertigo, imbalance, nausea, and vomiting, with or without the presence of a headache. According to the Vestibular Disorders Association (VeDA), symptoms of vestibular migraine vary amongst individuals and include vertigo, dizziness, photophobia (sensitivity to light), phonophobia (sensitivity to sound), osmophobia (sensitivity to smells), visual aura (seeing flashing lights, brightly coloured spots, zigzag lines), neck pain, headache, and visual disturbances (visual snow and blurred vision.)
It can be difficult for me to identify which condition is causing my symptoms, as the conditions tend to overlap. My symptoms are often triggered by factors such as weather changes, lack of sleep, hormone changes, too much screen time, stress, and travel.
The Impact of Living With a Balance Disorder
The impact of these conditions on daily life—both practical and emotional—can be huge. Here are four things I’d like people to know about living with a balance disorder, along with some personal strategies for managing them:
It’s Invisible
To the outside world, you might appear completely fine, even during a flare-up. As an invisible illness, vestibular disorders can be frustrating because the symptoms aren’t always visible. Of course, when balance is severely affected, some symptoms do become apparent. But, when dealing with the less visible symptoms, hearing comments like, “But you look well,” can be disheartening.
White outline on blue of a person holding their head and scrunching their face in pain.
For me, everyday symptoms that rise and fall during the day, such as ear and head pressure, lightheadedness, blurred vision, fatigue, and sensitivity to light and sound are noticeable only to me. Simple tasks can take a lot of energy, and people around me may not realize how much effort it takes just to meet a friend for coffee, buy groceries, go to work, prepare a meal, or clean the house.
Management Strategies
I communicate openly with those closest to me about my conditions. Letting loved ones, friends, and colleagues know what we’re going through can help them understand our limitations and offer support when needed.
I also celebrate small victories, such as carrying out tasks around the house or completing a day's work.
I avoid comparing myself to others who may appear to be achieving more, or to my “old” self when vestibular issues weren't a part of my everyday life.
2. Symptoms Can Be Unpredictable
You may find that certain foods and drinks such as coffee, alcohol, or salty foods trigger your symptoms. Maybe a change in weather causes your symptoms to flare, or stress or lack of sleep. Even when triggers can be identified, you may not have complete control over your symptoms. Sometimes a flare may come out of nowhere, or maybe the weather changes and there’s nothing you can do to stop the storm coming.
A person with a sad expression resting their head on their hand. Above them, a calendar graphic shows a date marked with a check.
Cancelling plans with loved ones or colleagues can be both upsetting and frustrating, not only for you but also for those affected by the change. The decision to opt out of social activities may be misunderstood by others, as they might interpret your absence from social activities as a sign of disinterest or disengagement, potentially leading to feelings of rejection.
I manage my symptoms as much as possible by eating healthily and exercising regularly. I also consult regularly with an ENT and a neurologist with whom I am figuring out an effective treatment regimen. But, I cannot always predict when I will have a flare-up.
Management Strategies
I try to be open to those closest to me about the unpredictable nature of my symptoms. The more our loved ones understand our symptoms, the more compassionately they can support us. It’s natural for our loved ones to feel hurt when we can’t attend special occasions, just as it is painful for us to miss them.
I remind myself that it is not my fault that I am dealing with vestibular disorders, and I practice positive self-talk:
I did nothing to make my condition worse. I am doing all I can to manage these conditions. There will be another event that I can go to, and I will really enjoy it.
3. It Affects Cognition
Brain fog from a vestibular disorder can make it hard to think clearly, concentrate, or feel mentally alert. This happens because the disorder affects how the brain processes balance and sensory information, leading to confusion and fatigue. Brain fog can be a difficult symptom to describe to others.
A graphic of a person's face, looking sad, with a cloud above their head.
For me, brain fog feels like a cloud over my thinking, making it difficult for me to focus, remember things, or process information quickly. I may feel mentally sluggish, disoriented, and tired, even if I haven’t been physically active.
Management Strategies
Sleep is crucial for me to keep the brain fog at bay. If I don’t get enough or don’t sleep well, I can count on waking up with a cloud around my brain. I try to go to sleep at the same time every night and wake up at the same time every day—my migranous brain needs routine. I prioritize sleep. I know it helps my brain recover and function better.
I also take breaks from work or tasks to reduce mental fatigue, and take a nap during the day if I feel like I need a mental recharge. I stay organized. I structure my days to help reduce cognitive overload. I write daily to-do lists and reminders to help keep track of tasks and deadlines.
4. I Really Enjoy the Good Days
Silhouette of a person dancing with their arms outstretched.
When you live with a balance disorder, you may find yourself enjoying the little things in life—a nice meal with a loved one, a stroll in the park, or a conversation with a friend. I’ve learned to cherish the days when I feel well.
Since living with vestibular disorders, I approach life with increased focus and purpose, prioritizing what truly matters to me. I am more focused than ever on pursuing and achieving my goals and I never take meaningful relationships with loved ones for granted.
Management Strategies
On good days, I pay attention to how I’m feeling, the activities I’m enjoying, and my achievements. I use these moments to engage in things I love and to tackle tasks. I make it a point to express gratitude for the positive experiences and the people who make them possible.
Most importantly, I savour and appreciate the days when I feel well!
My Balance Disorders Were Life-Changing
Due to my balance disorders, I had to give up my teaching career of 14 years — the visual and audio stimuli triggered me to feel unsteady, making it unsafe for me to work in a classroom with 4-year-olds. It’s important to note that not everyone with a balance disorder will need to give up their career. Since triggers and symptoms vary from person to person, it often depends on the type of work you do, and how your body responds to it and the environment.
Although I had to let go of a career I loved, a conversation with a friend who is a psychotherapist and coach helped me realize that I could transfer the skills I developed in teaching to a new, fulfilling role as a hearing loss coach. I now work a flexible schedule from home that accommodates how I’m feeling, and above all, I’m passionate about what I do. I love supporting people like me in living well with hearing loss and balance disorders. As a hearing loss coach, I help people with hearing and balance conditions move forward positively, achieve their goals, and live lives they’re proud of.
Need Some Balance?
With extensive experience supporting individuals with balance issues, I offer coaching services tailored to your needs. Whether you’re working on managing vestibular symptoms, finding ways to communicate with loved ones about your condition, exploring a new career, or adjusting your current job to fit your dizzy days, don’t hesitate to get in touch.
