An invisible illness is one that is unseen to the naked eye. People with dizziness and imbalance may have a difficult time explaining their condition to others because, on the outside, they still look the same. Without any obvious signs of physical injury (such as a cast or visible scars) it may be difficult for people to understand that there is still something serious happening inside of your body.

This lack of understanding can create even more stress when your family, friends, and co-workers have expectations that are no longer in line with your abilities, energy levels, and tolerance. Sometimes, trying to explain your circumstance can be exhausting in itself. You might try to either push through and overdo it, which can result in serious flare-ups, or pull out of activities altogether and begin to feel socially isolated. You may also feel your mood impacts those around you, leading to feelings of tension, guilt, and inauthenticity.

How you can help others understand your dizziness and imbalance

Briefly explain your condition

A simple explanation can go a long way in helping to explain your condition. For example: “I have a condition where my balance system in my brain is not working properly. It leaves me feeling ______ when I do _______. My brain is not reading the messages properly, and situations like _______ make it feel a lot worse.”

Encourage others to learn about your condition

• If you have BPPV or PPPD, sharing Balance & Dizziness Canada’s animated videos [YouTube] can help others understand your condition in just a few minutes.
• For those interested in taking a deeper dive, share Balance & Dizziness Canada’s article about your balance and dizziness disorder.
• If you are working with a vestibular therapist, it may be helpful to have them connect with your workplace to provide information about your condition and how to help you best. An occupational therapist familiar with vestibular conditions can do a worksite visit and work with your employer to create an environment that works best for you.

Bring your loved ones to appointments

Having health care professionals validate your symptoms can be impactful not only for your sake, but for getting loved ones to better understand your condition and how to support you as well. Bring a family member or friend along to your health care appointment(s) and encourage them to ask your provider questions.

Make your limitations known

To aid in your own recovery, it is important to avoid over-committing and setting yourself up for a roller coaster of flare-ups. Make it known to family and friends that your dizziness and imbalance condition may limit the level and length of your activities.

Educate loved ones about the fluctuations in your disorder and how this variation means you need to pace yourself. Being up front about your situation will take away some of the stress, pressure, and guilty feelings that you may otherwise have. You can help set suitable expectations for others - and yourself - by explaining your limitations.

Let your loved ones know that you:

• May need to wait until the day of an event to decide whether you can go.
• Can only commit to a certain part of an event.
• Need to step out and take a break from an event when your symptoms start to increase.
• Are less likely to "flare up" when you catch your symptoms increasing and take a break before they become too overwhelming.
• Have an exit plan ready and may need help executing it.
• Function best when you can control the setting for a get-together. For example, you may be best at quiet time of day, in a visually less busy place, and sitting with your back towards a space with lots of people moving about.

The Spoon Theory explains what having only a limited amount of energy each day feels like. Consider sharing this short story with loved ones who have a hard time grasping what it is like to live with an invisible chronic condition.

Create a support network

Living with an invisible injury can be an isolating experience. Tell your loved ones how they can best support you to pace and plan. In a stimulating environment, for example, ask a loved one to check in every 20 minutes to see how you are feeling and to remind you to step out for small recovery breaks. At home, identify which tasks are hard for you to do and which ones are easy. Talk about, and then divide, the workload differently. Communicating in this specific way will help your loved ones understand your limits and contribute to your wellbeing.

For more ways to help you, encourage your loved ones to read our For Family and Friends page.