Living with a vestibular disorder: How counselling can help you

Looking at Van Gogh’s paintings, I have often wondered if his unique and beautiful way of representing the world, the dizzying swirls, and the thick brush strokes creating the impression of constant movement, had anything to do with his vestibular disorder.

Van Gogh, it is now commonly believed, lived a vestibular disorder: a medical condition which affects the body’s internal balance system. Perhaps you have been diagnosed with a vestibular condition, or you know someone who has. You may be experiencing chronic, temporary or episodic symptoms such as dizziness, brain fog, fatigue, tinnitus (ringing in the ears), nausea, motion sensitivity, and visual disturbances such as struggling to look at patterns or fast-moving images on screens.

Perhaps you have been diagnosed with Ménière’s disease, vestibular migraine, post-concussion syndrome or vestibular neuritis – or you may have no diagnosis yet. For many people, the journey to obtaining a diagnosis can be a long one, with multiple specialists consulted and a variety of tests undergone. This makes vestibular disorders all the more complicated to adjust to. You might even have been told by health professionals lacking in the right expertise that it is all “in your head:” meaning, caused by psychological problems.

Another reason vestibular disorders are difficult to adjust to is that they are highly unpredictable; the symptoms can change from one day to the other. They can come and go. And then there is something about the very experience of being dizzy that is in itself profoundly disorienting; when the physical world around you no longer grounds you in the way it used to, life itself can suddenly seem deeply unpredictable. 

If you or a loved one is struggling emotionally as a result of experiencing vestibular symptoms, please know that this is not uncommon. Vestibular conditions are little-known yet can have a huge impact on people’s lives. Family and friends do not always understand this, in part because vestibular disorders are invisible health conditions, that cannot easily be detected from the outside.

If you would like to know more about vestibular disorders and their impact on mental health, how to manage your emotional well-being, and how counselling can help you with this, then this article is for you.

How vestibular disorders affect us

Like any invisible health condition or disability, balance disorders affect people’s lives in profound ways. Some of the effects on mental health are directly related to the unpredictable and destabilising nature of the symptoms. Anxiety for example: experiencing dizziness and vertigo often goes hand-in-hand with increased anxiety and even panic attacks.

This is something people living with a vestibular disorder can feel shame about and struggle to explain to their loved ones. And yet it is no surprise that you feel more anxious. When the world around you becomes unstable, when your body detects a feeling of imbalance, a natural reaction is kick-started. Your brain activates your sympathetic nervous system, also called the fight-or-flight response, a state in which your body releases stress hormones such as adrenaline and cortisol, where your heart rate increases and your muscles tense up ready for action to protect yourself.

People living with vestibular disorders know that it takes time and effort to learn not to interpret the instability and imbalance as danger and for their nervous system not to activate the fight-or-flight response as quickly any more.

Alongside anxiety, another well-documented effect on mental health is low mood, depression and hopelessness. For some people, becoming dizzy can come with a loss of identity. Feeling that you are not yourself any more or that you are grieving is not uncommon, especially if the condition carries on in time. You might start to grieve your past life, your past healthy, non-dizzy self and the activities you used to be able to do. There can be material and financial loss, due to having to change careers or work patterns to adapt to the condition. 

Having to rebuild your identity with dizziness in your life is a journey that takes time, but – and this is a deeply hope-giving thought – one where post-traumatic growth is possible. 

Here are some other ways in which vestibular conditions impact people’s lives:

• A sense of isolation - staying at home for safety, having difficulty socialising or going into busy places.
• Loss of autonomy - having to rely on others, financially or for day-to-day activities like shopping, driving and cleaning.
• Post-traumatic stress - experiencing dizziness and other vestibular symptoms can be a traumatic experience, physically and emotionally.
• Fatigue - for the brain to adjust to dizziness throughout the day, it has to work harder. This can come with feeling tired more quickly and struggling to carry out activities that others find easy to deal with, such as house chores.
• Over-analysing and unhelpfully placing the responsibility for our symptoms on ourselves - people with vestibular disorders often end up wrongly blaming themselves for their disorder, for example, by assuming that their anxiety causes them to be dizzy, or by believing that their avoidance behaviours are the reason they still are. These unhelpful thoughts can be encouraged by others, including ill-informed health professionals suggesting it is all “in our head”,

Tips for improving emotional well-being

This will come as no secret to anyone who has experienced vestibular symptoms – dealing with chronic or episodic dizziness requires major adjustments in lifestyle, and it takes a great deal of time and patience. Here are some things that people have found helpful:

• Slow down and allow yourself to rest regularly. Explore this in counselling if you find this difficult. In our modern societies where productivity is a central value, resting is seen as unproductive, useless time. When we have to rest more on average than others, we can be quick to criticise ourselves.
• You might find the “spoonie” theory helpful. Often people living with chronic health conditions find that they have limited energy resources to complete their daily tasks – you could see those resources as daily “spoons” you have available for any given day. Where other people don’t have to count their spoons so carefully, or at all, spoonies have to make careful choices about how they use their energy resources or “spoons”.
• Pace yourself. With the pacing method, you stay active during the day and accomplish the tasks you want to accomplish, but take frequent breaks. Key to the method is setting a lower, more manageable baseline of activity and avoiding extremes of inactivity and activity so that, overall, your energy levels are more stable and you are able to achieve the things that matter to you.
• Regular exercise such as walking, swimming and yoga. Apart from its usual physical and mental health benefits, it helps the brain adjust to dizziness and develop new neural pathways of dealing with imbalance.
• Mindfulness. In Full Catastrophe Living, Jon Kabat-Zinn explains how mindfulness can help live a meaningful, fulfilling life even when “catastrophe” has hit: by listening to your body closely and becoming more aware of your own reactions to your symptoms, such as when you engage in negative, critical self-talk. Mindfulness encourages the cultivating of what he calls a “wise attention” to your symptoms, free from unhelpful, distressing layers of thought.

How can counselling help?

Counselling is not about unearthing and treating an emotional cause for the vestibular disorder. Sometimes family, friends, or even health professionals who think that the symptoms are psychosomatic (caused by psychological problems) believe that if only mental health improved, the dizziness would disappear. This can give false hope for a cure and add the burden of self-blame when symptoms do not change. 

Emotional stress can be a trigger in vestibular disorders, as is the case in migraine-associated vertigo, but it is important to remember that it is only one trigger among many other types of triggers (such as head injury, genetic predisposition to migraine, hormonal changes, hydration, diet, fatigue). 

Counselling is about finding a supportive space where you can safely process your experience, where you won’t be judged or told it is “all in your head.” It provides a space where you are allowed to feel all the emotions you are struggling with as a result of dizziness or vertigo, where you can grieve if you wish so, and where you can find a new way forward if that is what you need. 

Look for a counsellor with specialist knowledge of chronic health conditions. It is important you find someone who does not disbelieve your vestibular symptoms. In humanistic and person-centred counselling, you as the client are the expert on your own experience, and the counsellor will stand by your side to help you find your own answers.

You are not alone on this journey – many other vestibular warriors have trodden this path before you. Counselling can help you on your journey, so don’t hesitate to reach out to a therapist if you would like support along the way.