To Family/Friends of Those with Balance and Dizziness (vestibular) Disorders

Muriel from BlogSince 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.

Balance and Dizziness Disorders ARE bad

Balance and Dizziness Disorders ARE bad

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!

Image used on BADD's brochure. We are always aware of trying to stay upright

Image used on BADD’s brochure. We are always aware of trying to stay upright

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……

At any time, things can begin to spin

At any time, things can begin to spin

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.)

Keep Going? I can't even get up!

Keep Going? I can’t even get up!

“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.

I often feel like this, but I'm sure he's better at it than I am

I often feel like this, but I’m sure he’s better at it than I am

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.

I've gotta get out of here! Too many colours! Too many lights!

I’ve gotta get out of here! Too many colours! Too many lights!

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

 

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4 thoughts on “To Family/Friends of Those with Balance and Dizziness (vestibular) Disorders

  1. As someone who knows just how much of a hard-working, reliable, “can-do and WILL-do” person my mother is, I know very well that if she says “I can’t,” she has to be seriously debilitated. I know there have been times when she literally had to crawl to the bathroom because she couldn’t stand up. I have taken her to appointments and watched the abnormal movement of her eyes when the doctor was testing her. I’ve even experienced bouts of dizziness myself. And yet, even with all that, I am painfully aware there have been times when I have not been as sympathetic as I should have been, nor nearly as helpful as I could have been. As a more mature person now, I realize that — and I regret it deeply. If you are someone reading this article and this comment, please know that if your family member is suffering from dizziness, you need to understand how devastating the condition is and how helpless people often are in the face of it. Please listen, please be patient, please help. Mom, if you are reading this, I am truly sorry for the times I let you down. I hope other people will not make the same mistake.

  2. Thanks, Muriel! Its great to gain real, meaningful insight into other people’s lives. I feel much more deeply connected to other humans this way, and quite honoured. Suddenly life becomes much more meaningful. One realizes we are all connected.
    . . . Those of us needing help do a great service in making the world a kinder place – giving opportunities to others to feel good by helping and feeling connected in a loving way to each other. For a real improvement in how positively you think about humanity, try going around in a wheelchair! People open doors for you, they make eye contact, they nod.

    Course, like you say, a wheelchair is a visible thing. I share your concern about being understood, because Chronic Fatigue Syndrome, being an invisible illness like your vestibular whatnot, I think seems like Ju-Ju to people. “He must be making it up.”
    . . . A guy wrote about his experience working at a Chronic Fatigue NGO or agency of some kind. He said he was extremely motivated to understand the illness, and thought that he did understand what people with these invisible illnesses went through. Then he got the disease himself, and he said it was like night and day in terms of the difference between his 3rd hand understanding of it, and actually having the disability first hand.

    Things are much better nowadays as our society becomes more sophisticated in its awareness and support of disabled people and all these wierd “new” diseases being discovered.
    – And I guess we have pioneers like yourself to thank for that, Muriel.

    Then there’s an 80 yr old woman I was reading about in New West, who just recently became blind, but said: “I’m not going to let this keep me inside”, and stands outside her house and asks passersby to escort her to the corner and hence to a place she needs/like to go to.
    . . . Boy – I admire her openness to being THAT vulnerable. That would be hard.

    Susan, I feel the same about my Mom, who died in 2000, as she had the same Chronic Fatigue as I did. We just don’t have the insight that we do when we are older.

    I think that, as humans, we tend to suppress our awareness of vulnerability, weakness, and mortality/illness. And hence when we see someone with some physiological situation causing dizziness and weakness, we dont’ know what to do. I felt just HORRIBLY helpless when my Mom started becoming paralyzed (due to calcification of the brain stem), in 1997. And GOD, it is always painful wishing I had tuned in to the huge loss and fears she must have been experiencing. In effect, saying goodbye to living on her own, when I thought, “we’re just going to the hospital to get this investigated.”

    We all have deep fear and insecurity. Especially men, oh especially men, – not being allowed to be vulnerable like women. So, all this stuff is very painful and insecure making. Better to see an action movie and feel like we can do anything!

    I have experienced glimpses into your world, Muriel, due to wearing contact lenses. Every few weeks or months, a spec of something gets lodged under the lens and no amount of blinking and tears can dislodge it. And I often HAVE to sit down, sometimes on the sidewalk. (This was before my legs became weak.)
    – Sometimes this causes me to experience a kind of vertigo or something, where I feel very unwell and not able to stand up. I just feel I can’t function, until I get that lens or spec of dirt out of my eye. Then there is this HUGE sense of relief. I guess eyesight is one of the things we depend on for balance, but there is also something else going on as well, I’m not sure what.

    So I know its nowhere near what you experience, Muriel, but I thought I’d share that.

    I guess we all are used to things a certain way in the world, and we think that that is just reality. When actually, there are a million micro-systems in our body required for our lives to continue as normal. Including I guess, keeping us standing upright. I gather there are several micro-systems involved – the ear, eyesight, muscles for balance, brain stuff, probably even sinuses…
    . . . All this is extremely existential – it brings up questions about our own existence. And we all feel on too shaky ground to want to think about that too much…

    And what you are talking about is textbook for anyone with any chronic illness that makes them not up to par, including my own Chronic Fatigue.

    Thanks for sharing this Muriel. People’s travails are grist for the mill of our own existence, and we learn much about ourselves and our interconnectedness from people with illness and disability.

    🙂

  3. Hi, Evelyn. I’m currently on an SSRI anti-depressant, and each time I’ve gone on it there have been pretty intense side effects, mostly horrible fatigue, for 2 months until your body gets used to it.
    – And going off of it, especially too fast, is a similar jolt to your body’s balance as it tries to keep all your body chemicals in sync.

    I think the whole medical system is hopelessly naive about this stuff. But then, I think they’d be mentally paralyzed into not being able to do their job if they thought about all this stuff too much, as I tend to do.

    But really, I DO wish they would realize that the patient has far more very specific expertise due to their day-in and day-out experience with the disease that a doctor could never get in a million years without experience it themselves.

  4. Hi, I found this piece quite interesting to read. I also suffer with Vertigo and understand how hard it can be to do daily activities. It is also quite hard to explain to others how bad the “dizziness” feeling is, especially if they don’t have experience with Vertigo. Thanks for sharing 🙂

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