The mind/body connection
Vestibular disorders affect individuals physically AND psychologically. These disorders are variable not only in their physical manifestation, but in their psychological manifestation as well. And while it is important to understand your physical symptoms, it is equally important to understand your psychological symptoms as they can often trigger and/or exacerbate your physical symptoms.
This article addresses the emotional impacts of vestibular disorders. The mind/body connection is complex. Emotional factors – the way we think, feel, and behave – can have a significant effect, for better or worse, on our physical health and our capacity to recover from illness or health setbacks. Emotions can trigger genuine physiological arousal. In the context of a vestibular disorder, a vicious cycle may develop whereby physical symptoms initially triggered by your condition result in anxiety and/or other emotional responses and further increase feelings of dizziness, vertigo, or other vestibular symptoms.
Common Experiences
In my work treating individuals with vestibular disorders, I have identified frequently occurring experiences and issues that can set off emotional disturbance. It starts with the diagnostic process. The lengthy, convoluted journey of visiting numerous specialists offering various opinions can be frustrating, to say the least. What’s worse, some of you might have been told your symptoms are being caused by anxiety and depression and that the symptoms are “in your head.” At the other end of the spectrum, some of you may have been sent to specialists to rule out frightening-sounding conditions (e.g., a stroke or other neurological condition). Even in the setting of reassurance about results, this testing experience is traumatic.
The sudden onset of symptoms, the unpredictability, and variability that often occur with a vestibular disorder are terrifying, unsettling and turn your world upside down… literally and figuratively. Another common experience I’ve often heard people describe is what I refer to as the invisibility of your illness. Vestibular disorders are, well, invisible… and thus more likely to be misunderstood. Most of the time people with vestibular disorders don’t look sick or unwell. Unlike a broken limb, a runny nose, a cough, or a positive blood test or scan, the damage/injury can’t be seen, furthering this lack of understanding. However, invisible does not mean imaginary. This invisibility can lead to another common concern: a fear of being dismissed or misperceived as lazy.
Other common concerns include worrying you may be perceived as drunk due to balance issues and sensitivity to light, sounds and geometric patterns.
Anxiety
Anxiety, fear, and panic are probably the most common emotional responses people have when diagnosed with a vestibular disorder. Anxiety often manifests in response to feeling ungrounded and insecure about being steady on your feet. A fear of falling due to imbalance, dizziness or lightheadedness is commonly reported. Panic attacks are also commonly reported. A panic attack is “an abrupt surge of intense fear or intense discomfort that reaches a peak within minutes and during which time [symptoms such as palpitations, sweating, trembling, shortness of breath, nausea, feeling dizzy] occur” (DSM-V, 2013). Individuals with vestibular conditions often experience hypervigilance to their bodies, which can easily put them in “fight or flight” mode if a situation feels slightly threatening. Even if not full-blown panic, “fight or flight” involves breath holding, muscle tension, and dizziness, which can perpetuate the anxiety-dizziness cycle.
In the context of a vestibular condition, a panic attack only serves to exacerbate physical symptoms, as well as trigger fears of losing control. It is no wonder that given the predominance of physiological symptoms, a panic attack or even a less intensive “fight or flight” state can be mistaken for a medical condition, such as a heart or asthma attack, and precipitate dizzy spells.
In response to anxiety, fear and panic, individuals with vestibular conditions may experience increased social isolation, withdrawing from social interaction and avoiding activities that normally bring them pleasure and satisfaction. It is important to note that it is very often fear and anxiety, not the actual physical symptoms that interfere with functioning.
Sadness & Depression
Having a vestibular disorder often results in a change in lifestyle. Changes to your activity level (at home and at work), your independence, your abilities, your stamina, and your relationships are experienced as losses. Loss, grief, and the process of mourning are just some of the feelings and experiences that these changes arouse. Social isolation can lead to feelings of loneliness. Feeling misunderstood by family members, friends, even physicians fosters a sense of helplessness and hopelessness. Guilt is commonly expressed in response to not being able to perform your usual duties and responsibilities. In addition, you may experience sleep and appetite disturbance and lethargy. These are the many forms and manifestations that sadness and depression can take in response to a vestibular condition.
Relationships
“I get dizzy too” or “You just need to be less anxious.” Are these responses you’ve heard from family members, friends, even physicians when you explain your vestibular symptoms? It wouldn’t be surprising if you have heard them … and felt misunderstood, frustrated and alone. Add to these feelings the need to rely more on others, to be more dependent on family members and friends for help with tasks you could easily do on your own previously and what you’ve got is a new challenge of managing interpersonal stress that didn’t exist before your vestibular condition. This tension in relationships often leads to increased arguments, social withdrawal, and loss of closeness and connection with even the most important people in your life at a time when these connections are vital.
Your Sense of Self
I was once running an educational group for people suffering from vestibular disorders and we were discussing the emotional impact of their respective conditions. One person described looking at herself in the mirror and not recognizing the reflection staring back at her. Nothing about her physical appearance had changed, but she felt like such a different person that she was basically unrecognizable to herself.
This anecdote painfully demonstrates the kind of change to your sense of self that can occur to those living with a vestibular disorder. The discrepancy between how you know yourself now and how you knew yourself before erodes self-esteem and self-worth. Unable to perform your usual responsibilities, changes in your role in relationships, and difficulty performing your job can really call into question your identity and how you know yourself. This is probably the most profound change expressed by individuals with vestibular conditions.
Coping Strategies
Thankfully, there are ways to overcome these difficulties and improve your mood, functioning, and quality of life. An important first step is awareness. Understanding your own emotional responses to the stress of having a vestibular disorder is an imperative first step in the process of recovery, both psychologically and physically. This can lead to an informative and inspiring exploration into the dynamics of your individual stress triggers and their origins. Keeping a daily journal that tracks activities, suspected and known symptom triggers, degree and frequency of symptoms, and strategies employed to combat each symptom can be a helpful tool in increasing awareness and self-monitoring of difficulties. In addition, learning stress management techniques can be quite effective in minimizing the emotional aspects of vestibular disorders. A variety of relaxation techniques, such as diaphragmatic breathing, progressive muscle relaxation and visualization/imagery can combat negative feelings and help to feel more in control. Other cognitive techniques include challenging or stopping unhelpful thought processes and the use of positive self-statements. And while it may be difficult and unfamiliar, asking others for help can eliminate some unnecessary stress and strain while also allowing others to get a sense of what you’re going through.
Treatment
Participation in psychotherapy provides support, validation, normalization, and coping skills in an individualized setting. Heightened emotions, especially negative ones, can interfere with and hinder your physical recovery by exacerbating your physical symptoms. Working with a therapist to better manage your emotions will maximize your physical recovery. A therapist can also work with you on identifying, learning, and applying the various stress management techniques mentioned above into your day-to-day life. Using these techniques consistently can help to restore a sense of control.
Working with a therapist also provides an opportunity to address the interpersonal tension that often coexists with a vestibular disorder through developing improved communication skills. Treatment can and often does involve family members and close friends to facilitate their education of your disorder, as well as to work on improving communication. In addition, being in treatment can facilitate acceptance of this new aspect of your identity, helping you to create a more integrated sense of self. Participation in a support group can also really help to minimize feeling misunderstood and alone while providing validation.
It is not easy to share these kinds of complications. It takes strength and courage. But the benefits are well worth it.
By Rachel Bilgrei, PsyD, with contributions from Joanna Wolfson, PhD
(c) 2024 VeDA
Recommended Reading
The following articles provide more information about evidence-based psychological interventions for chronic dizziness:
- Edelman, S., Mahoney, A. E. J., & Cremer, P. D. (2012). Cognitive behavior therapy for chronic subjective dizziness: A randomized, controlled trial. American Journal of Otolaryngology, 33(4), 395–401. https://doi.org/10.1016/j.amjoto.2011.10.009
- Herdman, D., Norton, S., Pavlou, M., Murdin, L., & Moss-Morris, R. (2021). Protocol for a randomized controlled feasibility study of psychologically informed vestibular rehabilitation for people with persistent dizziness: INVEST trial. Pilot and Feasibility Studies, 7(1), 156. https://doi.org/10.1186/s40814-021-00896-y
- Herdman, D., Norton, S., Murdin, L., Frost, K., Pavlou, M., & Moss-Morris, R. (2022). The INVEST trial: A randomised feasibility trial of psychologically informed vestibular rehabilitation versus current gold standard physiotherapy for people with Persistent Postural Perceptual Dizziness. Journal of Neurology, 269(9), 4753–4763. https://doi.org/10.1007/s00415-022-11107-w
- Popkirov, S., Stone, J., & Holle-Lee, D. (2018). Treatment of persistent postural-perceptual dizziness (PPPD) and related disorders. Current Treatment Options in Neurology, 20(12), 50. https://doi.org/10.1007/s11940-018-0535-0
- Waterston, J., Chen, L., Mahony, K., Gencarelli, J., & Stuart, G. (2021). Persistent postural-perceptual dizziness: Precipitating conditions, co-morbidities and treatment with cognitive behavioral therapy. Frontiers in Neurology, 12, 795516. https://doi.org/10.3389/fneur.2021.795516