On our good days, people with vestibular disorders don't look sick. Most people don't see us at our worst: house-bound, curled into a ball, nauseated, crawling to the bathroom, trying not to move our heads, holding onto the wall for support, clammy-skinned, fuzzy-headed, scared, angry, depressed. And, if vertigo strikes in public, we're more likely to be seen as drunk than ill.
It's hard for family and friends to understand our lack of energy, our inability or unwillingness to tackle everyday chores, our preference for staying close to home. But what they may not realize is that we are constantly exerting great effort just to stay upright. We are often exhausted, simply from trying to live our lives. Most tasks mean we need to look down, look up or just move too much. We want to keep our heads still, folks! Ever had car sickness? How'd you like to feel like that most of the time? You wouldn't want to leave home, either. Home gives us the most comfort, a place where we can fall apart and throw up or curl up in relative peace.
We know you want us to snap out of it, to feel and act normal. What you may not know is that most of us would sacrifice a limb to make our heads work properly. In our darkest moments, we want to die.
We are not lazy, slothful or unmotivated; we're sick! Being sick changes you; ask any psychologist. Your sense of adventure wanes, your outgoing personality fades, your energy level drops through the floor. Fear, depression and lack of focus often plague us. The longer we're sick, the worse these can become. On our good days, you want us to be like we were before, but we don't lose the fear just because we're having a good day. We're always waiting for the other shoe to drop. And those of us with chronic disorders don't feel all that great even on our good days.
And the other difficult truth is that our symptoms can change over time. We can go from having only acute episodes to having chronic issues. We can get better, too! No one is more confused than we are. When we're first sick, we have hope that we'll be cured, but that's often not the case. For those of us whose symptoms drag on for years, we have to accept that this is our new normal. We face losing friends and even family because we just can't do everything you want us to do. Sometimes we can do very little, but we're still here inside, so please don't abandon us. We will have good days when we can go for lunch. We will have good days when we can walk on the beach. But we have little control over when those days will be, so please be patient; we need you. Without you, our lives would be bleak indeed.
Here are some things you can do for us:
- advocate for us with medical professionals, insurance agents, lawyers, employers, Human Resources (we tend to be worse in the morning and better as the day goes by, so maybe we can work a later shift; get a letter from our doctor to go in our file, so when we're too sick to come in, everyone knows it's a medical condition, not malingering!)
- help us find therapies that have merit, like physiotherapy, certain head and eye exercises, etc.
- get on the computer and do lots of research! Our fuzzy brains don't always grasp everything. We need help.
- keep an eye out for new technologies and techniques, like PoNS, BalanceWear and so on. Any small improvement can give us back some of our life and give you back a piece of who you knew us as.
- look for simple things that can really help: a cane for balance; a book stand so we don't have to look down while reading; single vision lenses instead of progressive lenses.
- partner with us. There are so many ways to help, like: moving things to lower shelves; getting a window seat for us on an airplane; making sure we sit opposite friends in a restaurant so we don't have to turn our head from side to side; offering your arm when stairs are involved or in situations that make us uncomfortable; learning to drive smoothly, so we don't get car sick (most of us have very motion-sensitive vestibular systems).
- ask us how you can help... today! Sometimes all we need is to be left alone while acute symptoms subside. Other times, we could use an arm to lean on, an advocate when we go to the doctor, or someone's shoulder to cry on.
- work with our limitations: give us time to pull ourselves together in the morning; plan appointments and outings for later in the day; help keep our stress levels low; when we go for a walk, let us set the pace; learn our triggers and help us avoid them.
- be part of the solution: if supermarkets set off our vertigo, do the shopping or order groceries online; hire someone to clean, pitch in yourself or be okay with a house that's less than perfect; be happy with simpler meals or take-out, or learn to cook.
- talk to people who have a friend or relative with similar issues; they might have suggestions.
- and, remember, we didn't choose this... and it can happen to you!
We may not look sick, but we are sick! Over time, we will probably get better, we will learn to cope and our brains can be retrained to help compensate for the loss of some of our vestibular system. We may even have a spontaneous remission. But you can do a lot to help us feel better today... and it all starts with your understanding.
Here Are Some Resources for Families and Friends:
The Spoon Theory
Read Christine Miserandino’s personal story and analogy of what it is like to live with a chronic illness. Everything she talks about relates to vestibular sufferers – we, too, have a hidden disability. The Spoon Theory is helpful for anyone with a hidden disability to explain how they feel to their family and friends. And here it is in PDF.
This page lists a variety of coping strategies, selected from suggestions made by our speakers and members, that might help your loved one better handle their everyday challenges.
Gaining Balance Video
The Gaining Balance video consists of 35 minutes of vestibular rehabilitation exercises specially designed for people with balance and dizziness disorders. They can be done at home with no special equipment. Instructor Pauline Martin is a physiotherapist who specializes in treating vestibular disorders.
BC Balance and Dizziness Facebook Page
Follow our Facebook page to learn about current research, articles, techniques and technology regarding vestibular issues. Leave a comment and we'll get back to you.
To Family and Friends of Those with Balance and Dizziness Disorders
Heartfelt plea for understanding written by Muriel Kauffmann, co-founder of BC Balance and Dizziness Disorders Society.
"What Is Wrong with You?" (You Look Fine to Me!) [YouTube]
View a presentation by neurophysiologist Art Mallinson, PhD, directed at friends and family to help them understand why those with balance and dizziness disorders can look so good when they feel so unwell. Read a summary of the presentation.
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