A Few Words...

What is written here is my opinion and personal experience only. I am not qualified to give advice - medical, legal, or otherwise. Please be responsible and do your own research regarding treatments, diets, doctors, and alternative therapies.

Thursday, July 5, 2012

Hijacking

I haven't had much time nor the inclination to create a blog post from scratch lately but, as I come across the great posts of others, I feel compelled to share them.  Here's one from a fellow chronic disease sufferer who is "Turning Straw into Gold".  This is a very articulate explanation of what wonderful things to say to a person who is either partially or totally disabled by an illness.



What Those With Chronic Pain or Illness DO Want to Hear You Say

Here’s what the chronically ill wish you’d say to them.

As a follow-up to last week’s piece, "What Those with Chronic Pain or Illness DON’T Want to Hear You Say", I thought it might be helpful to let others know what we wish they would say to us.
“You look so good, but how are you really feeling?”
It’s hard for us to respond to comments like, “You look so good” (or the always dreaded, “But you don’t look sick”) because we know that you’re just trying to be nice. If we respond truthfully with, “Thanks, but I feel awful,” you might be embarrassed or think we’re being ungrateful. It would be such a relief to be asked a question that goes to the heart of the matter: “How are you really feeling?”
“I’m going to the grocery store, can I pick anything up for you?”

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This is a helpful question, as opposed to, “Call me if there’s anything I can do” (from last week’s piece). As I said there, we’re unlikely to respond to such an open-ended offer, meaning we won’t call and say, “Can you go to the grocery store and get me some dish soap?” We don’t want to make you go somewhere that you aren’t otherwise going. But if you let us know that you’re already going to the store, that’s a different matter entirely!
In fact, the more specific your offer of help, the better. For example, we’d love to hear an offer to do one of those life tasks that back up for us because we’re not well enough to get to it: take our car for an oil change (we’ll pay for it!); weed in our garden for a bit; do a load of laundry; even clean our refrigerator.
“It must be hard to be sick and in pain all the time,” or “Not being able to work must be so frustrating,” or “I imagine it’s a daily grind to have to pace yourself so carefully.”
These comments are examples of “active listening,” a child raising technique I learned when my two kids were young. I wasn’t always as skillful at it as I wanted to be, but the idea is to let your kids know you’ve really heard their concerns by feeding back to them, in your own words, what they’ve said.
For example, if your daughter is afraid of the dark, instead of trying to talk her out of how she’s feeling by saying, “There’s no reason to be afraid of the dark,” or “You’re too old to be afraid of the dark,” you feed back her feelings to her by saying, “The dark is scary to you.” When you actively listen in this way, children feel heard and validated. This makes it easier for them to overcome a fear because they know you’re taking their concern seriously and that you’re trying to understand it from their point of view. We who are chronically ill want to feel heard and validated. We want to know that you understand how we feel. In fact, everyone—sick or not—wants to know that others understand them!
To active listen, put yourself in another’s shoes and think about how you’d feel if you were in his or her circumstances. Then feed those feelings back by saying, for example, “You must feel sad and disappointed that you can’t go to the party.” I hope all of you have experienced the relief that comes from feeling deeply listened to.
“How are you holding up? Do we need to stop visiting so you can rest?”
What a blessing it would be to hear a visitor offer this “prompt.” I’ve lost count of the number of times my body was telling me to lie down, but I didn’t excuse myself. Even if we’re wilting away or are in bad pain, most of us are unlikely to bring it up ourselves because we don’t want to let you down. But if we know you’re aware of and sensitive to our limitations, we’ll respond honestly.
“I miss going out to lunch together,” or “I miss going to the movies with you,” or “I miss going to the mall together.”
Speaking personally, I want to hear a heartfelt expression of the way you feel about how things have changed for us. It lets me know that you value our relationship.
“Don’t feel bad if you have to cancel our plans at the last minute. I’ll understand.”
What a relief this would be to hear! I used to force myself to keep commitments even if I was too sick to leave the house. Invariably, it led to a bad “crash.” I’m much better now about cancelling plans if I have to, but I still feel bad about it unless those plans were made with one of my “it’s okay to cancel” friends. I treasure them.
“Would you like to hear about this crazy adventure I had yesterday?”
You bet I would! Some friends don’t want to tell me about what they’re up to, especially if it’s something exciting. They think that talking about their lives will make me feel bad since I’m so limited in what I can do. But hearing about another’s adventure makes me feel connected to the world and adds real-life adventure to what I often just have to get off the TV.
“I hope you’re as well as possible.”
To those of us living day-to-day with health challenges, this comment is so spot-on that many of us just use the initials AWAP when communicating with each other, as in, “I hope you’re AWAP.” Reflecting on this, wouldn’t it be a compassionate comment to make to anyone? Everybody has his or her share of stresses and sorrows—in sickness andin health. And so, my wish for everyone reading this piece is that you’re AWAP.
Is there something you wish friends or family would say to you? Please feel free to share it with others the comments section.
© 2012 Toni Bernhard
I'm the author of the How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and their Caregivers, winner of the 2011 Gold Nautilus Book Award in Self-Help/Psychology. Website: www.howtobesick.com
I appreciate your shares on Facebook, Twitter, etc. You can also click on the envelope icon and email the piece to others. Thanks!

Sunday, July 1, 2012

Anxiety and Depression in Meniere's Disease

It's been a long time since I've posted, but I came across this article this morning that really nails the psychological toll that having Meniere's disease can have.  I've definitely experienced all of these emotions.  I am emotionally much better off now having the vertigo controlled, but I frequently fight the fear of it coming back or, worse, it going bilateral.

Here's the article, with the link below:

Anxiety and Depression in Meniere's Disease
by Dr. Mary Alm


Becky is worried and sad.  A new school year is about to start and her vertigo attacks seem to be more frequent.  Last year, she had to take many sick days because she was recovering from a vertigo attack or her tinnitus was too loud for her to hear the students in her second grade class.  She loves being a teacher and she doesn’t want to quit or lose her job, but her Meniere’s disease seems to be getting worse.  Becky doesn’t know what to do. She feels afraid and helpless.
Becky is not alone.  Anxiety and depression are common among those with Meniere’s disease, an incurable and debilitating inner ear disorder, characterized by tinnitus, periodic episodes of vertigo, ear pressure, and progressive hearing loss.  People with Meniere’s disease are more likely to be depressed and anxious than people who do not have inner ear problems.
Woman crying
Causes of Distress
There are several reasons for the higher rates of anxiety and depression.  The symptoms of Meniere’s disease are unpleasant and can be unbearable.  Vertigo is often terrifying.  Tinnitus can be very loud and internal ear pressure can be excruciating.  Many have difficulty with word retrieval and thinking clearly, which can interfere with work or normal conversation.  The unpredictability of symptoms also causes much anxiety.  Some people experience more intense symptoms with weather changes, stress or fatigue.  Many have vertigo or an increase of other symptoms that come without warning.
The permanency of Meniere’s disease is also hard to bear.  People with Meniere’s disease may become sad and anxious after realizing that they will have the disorder for the rest of their lives.  Their sadness and anxiety may worsen when they lose more of their hearing or if the other ear becomes affected.   Having louder tinnitus or more frequent vertigo attacks can also cause more distress.
Symptoms often interfere with normal life.  People with Meniere’s disease may be unable to fulfill responsibilities at work, at home or in the community.  Others may not understand how Meniere’s disease impacts the ability to do common tasks.  Bosses may expect those with Meniere’s disease to be as productive as your coworkers.  Spouses may expect household chores to be done.  Friends may feel slighted if the person is not able to socialize.   People with Meniere’s disease may develop feelings of guilt if they are unable to meet the expectations of others.  Symptoms may lead to reduced responsibilities at work, termination from a job, family conflict and social isolation.  These situations often cause much distress.   Many people experience grief for the lives they once had and for plans and dreams that can no longer be realized.
Man with Symptoms on Sofa
Health Anxiety, Anxiety Disorders and Depression
An excessive worry or preoccupation with symptoms may result from having horrible experiences with symptoms and fear that the illness will get worse.  This extreme worry is called health anxiety.  People with health anxiety become very concerned with any slight changes in their symptoms.   These minor changes can lead to much distress.  If left untreated, health anxiety can spiral to hypochondria, which is when one worries about symptoms or an illness that the person does not have.  People with Meniere’s disease are at risk for developing health anxiety because the disorder is chronic, degenerative, incurable and unpredictable.
The distress of having Meniere’s disease can become so great that an anxiety disorder develops.  Panic attacks, agoraphobia, and generalized anxiety disorder are anxiety disorders that may be seen among those with Meniere’s disease.   Some people also show a few signs of post-traumatic stress disorder (PTSD).  Signs of the various anxiety disorders are distinctive.  A panic attack is an episode of intense fear that is quite frightening.  Some other signs of panic attack include a racing heart, shortness of breath, dizziness or sweating.  In agoraphobia, a person is afraid to be in a situation in which escape may be difficult, such as being in a crowd.  Generalized anxiety disorder is worrying about many different things.  PTSD is triggered by a traumatic event.  People with PTSD have flashbacks, nightmares or uncontrollable thoughts about the traumatic event.  They may be hypervigilent or have difficulty concentrating.
People with Meniere’s disease may feel sad when they reflect about how their illness has impacted their lives.  They may feel worthless, helpless and hopeless.  These feelings may indicate depression.  People who are depressed feel sad or have lost interest in doing enjoyable activities.  They may feel extremely tired and have insomnia or sleep too much.  Some other signs of depression include appetite changes, feelings of guilt, difficulty focusing on things, irritability and thoughts about death or suicide.
Help Image
Help for Anxiety and Depression
            If you or a loved one has signs of anxiety or depression, it is recommended that you seek help from a psychologist.  Research shows that talk therapy is an effective way to reduce anxiety and depression and has longer-lasting effects than medication.  A psychologist will refer you to a psychiatrist if you also need medication to treat depression or anxiety.  Finding a psychologist who is knowledgeable about Meniere’s disease and who makes you feel comfortable is important.  To find a psychologist, ask your health care provider for a referral.  You can also search the websites forPsychology Today and GoodTherapy.org for psychologists and other mental health professionals in your area.
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