Balancing Act: Living with a Vestibular Disorder
If you search for vestibular disorders on WebMD, you’ll find plenty of information. However, unless you or someone close to you is among the 1% with vestibular migraines or the 0.4% with Meniere’s Disease, these conditions may be unfamiliar to you.
Despite being relatively unknown or misunderstood, vestibular disorders have a profound impact on quality of life.
I recently read a study published in the Journal of Vestibular Research that found the Quality of Life, which includes factors such as physical well-being, social relationships, personal fulfillment, and independence, for a patient with active Meniere’s Disease, is comparable to that of an Alzheimer’s patient not yet needing institutional care or a patient with AIDS or terminal cancer in their final days. That information is both shocking and convicting. Because many of us have been taught about, experienced, or seen realistic depictions in the media of people with Alzheimer’s, AIDS, or Cancer, I also believe it has the power to bring new understanding and empathy for those diagnosed with vestibular disorders.
From personal experiences, I am offering a few important areas for patients and their loved ones to consider as they seek to support and care for one another effectively.
Symptoms and Symptom Management
Vestibular disorders come with a variety of symptoms that may include vertigo, persistent dizziness, tinnitus, nausea, sensitivity to light and sound, brain fog, and more. Each person experiences these in differing intensities and frequencies leaving us with no “standard” patient profile. Symptom management usually includes a combination of medication, physical therapy, and avoidance of triggers. Finding the right combination of therapies is difficult and sometimes requires extended periods of trial and error.
Your loved one needs patience and support as they navigate complex insurance issues, a shortage of specialized healthcare professionals, and the trial and error of finding the right treatment. It is normal to feel discouraged after failed treatments. Your willingness to listen and support during these times can strengthen them, empowering them to have hope and continue to say “yes” to the treatment possibilities.
For the diagnosed person, finding words or phrases to describe symptoms can be empowering. For example, saying “I feel like the room is spinning quickly” or “I’m lightheaded and unsteady” helps others to understand the intensity of what you’re experiencing. You might find it useful to rate symptoms on a scale. Saying “the noise level is too intense” or “the flashing lights make it hard to focus” can also pinpoint triggers and guide decisions about avoiding challenging environments. This clarity brings a greater sense of control over your health and well-being.
2. Mental Health Impact
Individuals who receive a diagnosis of a vestibular disorder, or any chronic illness for that matter, have experienced a loss and will grieve that loss. Grief is unpredictable and comes in waves. There’s no ‘right’ way to grieve, and no magic formula for getting through it. In many cases, grief may never fully end.
The thing that has been lost is not returned, it cannot be replaced, the griever is simply finding joy in other areas of life, making the loss more bearable.
During the early days of disease progression, I was caught off guard by the secondary losses. These were the areas in my life that were impacted indirectly by my disease progression; relationships changed, there was a loss of community and an awareness that many future hopes and dreams were no longer realistic.
Last Christmas, my step-brother’s youngest child approached me and very sweetly tugged on my hand, pulling me toward the bathroom. As I handed him to his mother, I realized a future dream I hadn’t consciously considered. The thought of what I might miss or not be capable of as a grandmother filled me with deep sadness.
There was a point in which these realizations came daily. The sadness came in waves. Gentle encouragement that reminds your loved one of the good things that are still to come while you support them in their own grief and acceptance process is healing.
Seeking help from a trained professional is also important. I have found hope and healing by working with a licensed clinical mental health counselor at a local Christian practice. As a loved one, it’s important to seek support for yourself as well. Connecting with a trained professional or joining a support group can provide valuable guidance as you navigate the new normal alongside your loved one.
3. Trade-offs and Choices
For those with vestibular disorders, environments that may seem normal like a restaurant, church, concert, grocery store, or school, could be difficult to navigate and may exacerbate symptoms.
I like to think of this like a rain gauge. When I am at my baseline, well-rested, and able to manage symptoms, the gauge is empty. Each activity, interaction, or exposure to triggers fills the gauge. Just as a rain gauge will eventually fill and overflow, symptoms are additive and eventually become too great to manage. As with a heavy downpour, the gauge fills and the time required to recover increases. It is important to be transparent with your loved ones about what you need during those times.
The diagnosed person may need help managing environments that exacerbate symptoms. You may need to support them as they make trade-off decisions like which things they will say yes to, regardless of their impact on symptoms, and when they will set aside time to recover and rest.
Consider areas where you are willing to sacrifice your preferences in support of their comfort. This selfless care will help your loved one feel hopeful that symptom management can be a reality.
4. Managing Your Own Well-Being
Caring for a loved one with a vestibular disorder can be challenging. It is crucial to remember that your well-being is just as important as the care you provide. Continuing to seek relationships and activities that bring you joy is important to finding balance. By managing your own mental and physical health, you can better be a steady source of care and encouragement.
Whether you are a spouse, child, or parent of someone living with a vestibular disorder, it’s natural to feel overwhelmed at times. It’s important to be patient with one another, as symptoms can be unpredictable and frustrating. Open communication is key — being transparent about the challenges you face together helps set realistic expectations and strengthens your connection. Prioritizing activities you can enjoy and spending quality time together can also help you navigate this journey, keeping your relationship strong despite the difficulties.
Living with a vestibular disorder is an ongoing challenge, not just for those diagnosed but also for our loved ones. Through patience, open communication, and mutual support, it is possible to navigate the ups and downs together. It IS possible to find balance. Being realistic, transparent about your needs, and intentional about planning activities and rest can allow you to experience a beautiful, fulfilling life.
Resources
There are many resources available for support and advice. Here are two that I recommend:
Vestibular Disorder Association — https://vestibular.org/
National Alliance on Mental Illness — https://www.nami.org/
