Since Dr. Graham Bryce and I started the B C Balance & Dizziness Disorders Society (BADD) 15 years ago, I’ve talked with hundreds and hundreds of members dealing with vestibular disorders. When our first Board met around my kitchen table, we discussed a name for our fledgling support group. I noted that “Balance and Dizziness Disorders” which was chosen, would probably have the acronym BADD, which might not look good. The response? “Well, it IS bad.” So “BADD” we became.
Through the years, members complain that nobody gets it. Not only do family and friends not understand how debilitating these conditions are, too many medical practitioners have no idea how difficult it is, at times, to function at all. These disorders are unpleasant enough to live with, but the lack of empathy from those around us can be devastating. With a broken arm, you sport a cast; if you are blind, you use a white cane; but stagger in the street (As I have from time to time) and people will look askance, consider you to be drunk and refuse to help you even if you request it. And, yes, that has happened to me!
Not only do we deal with a scary, unstable world which moves in ways others don’t experience, with a balance system others take for granted which won’t work properly for us, but also the anxiety and fear of knowing that at any moment, often without warning, everything may begin to spin. When that happens, panic ensues, we find it impossible to keep our bodies upright. The feeling is terrifying.
I have desperately clung to street poles, mailboxes, garbage cans and strangers when suddenly hit by one of these episodes. I have courageously fought my way out of my apartment in stages after sieges. I’ve had to stop my car enroute to work in busy Los Angeles traffic, my heart pounding while my whole body trembled with fear. Not pleasant……
I have arthritis. It hurts. Unfortunately, after so many falls, a knee replacement didn’t work miracles. I deal with pain every day. I have, however, repeatedly said I can cope with the pain — as long as I’m not dizzy. Any day in which I don’t experience dizziness is a terrific day!
A father of a member I spoke with insisted his son was not being diligent. He missed a business appointment when he was experiencing an episode. (The son’s attacks were so violent, he was unable to get up from the floor and would have to be taken to hospital by ambulance.)
“I’ve had a heart attack. I’ve had cancer,” the father insisted, “You just keep going.”
When I tried to explain that I, myself, ordinarily very reliable, self-sufficient and hard-working, was unable to “just keep going” even though I was not financially ready to retire. He didn’t hear or understand.
“He had a friend fill in for him,” the dad continued, “Maybe his client will like his friend better and he’ll lose the client. You just have to……”
I failed to reach him. What can I say when members tell me their family or even their doctors don’t take their conditions seriously. Too many family doctors seem to know nothing about vestibular disorders. At times I despair.
Yes, we make dates and appointments we sometimes can’t keep. I was to be interviewed on television for my job when I became so dizzy on my way to work, I had to call in to say I had no choice but to take a cab home. They were not pleased. I was the only one working there comfortable with that kind of assignment. The cab driver, seeing how ill I was (did he think I was already drunk at 8 a.m.?) didn’t offer me any change. He took much more money from me than he should have. I was too sick to argue — but I still resent it.
One of the most common causes of dizziness is Benign Paroxysmal Positional Vertigo (BPPV), often easily treated by a manoeuvre. Many of us with other vestibular disorders end up with BPPV as well. Sometimes a manoeuvre will work. Sometimes it won’t. Sometimes it makes you feel even worse. There are no easy, simple answers.
I plead with family and friends of people who experience balance and dizziness disorders to try to understand and forgive when we’ve made promises we can’t keep or a date we have to cancel.
We may feel a desperate need to immediately escape from a shopping centre because the bright colors are making things impossible. We’ll suddenly grab your arm to hang on to because the world has decided to play nasty tricks on us. We’ll ask you to walk farther to avoid walking on the grass because if there is a slight indentation hidden by it we may fall. It may seem unreasonable to you, but I am familiar with it all.
Yes, we do love you. Yes, we do want to see you. And, yes, please do not misread our distress — it has nothing to do with you and it is not a rejection of you. We need you in our lives even more than other people do.
For information about BADD, see http://www.balanceanddizziness.org