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Chatter: I am having a lot of trouble with my emotions. I am on
anti-depressants and anxious as well. My family says I think too much -- I ruminate.
My psychologist thinks I need new medication. I haven't been the same since
my last surgery three years ago. I haven't been able to get back to work. The
depression began after I began trying to go back to work. (Discussion of what
medications she is taking.)
Dr. Wood: Ruminating is a common symtpoms of anxiety and depression in
women. The medications you are taking are common medications that can work well
under the supervision of a psychiatrist. Anyone taking anti-depressants should be
seeing a psychiatrist (a medical doctor, not a psychotherapist) to check the medications
once a month. These are powerful medications with potentially powerful side effects.
I would suggest that you review your medications with your physician (not
psychologist) to determine if the medicine, dosages, and/or frequencies are working for
you.
In addition, cognitive behavior therapy, an active form of psychotherapy and
inter-personal psychotherapy are equally effective. I prefer to try these before
prescribing medications. They can also be used successfully in combination with the
medicines.
It is important in self-management of emotion to separate thinking from emotion.
Emotion is a consequence of thinking.
Chatter: I get frustrated because my family thinks that I can just
turn it off. I simply don't know how.
Dr. Wood: What is important is what you think.
It is important for you to be courteous in responding to your family's view, yet maintain
a personal committment to self-awareness and self-understanding. You are
important. Based on what you have said, it apears that your emotional struggles are
secondary to VHL, suggesting that talking therapy and emotional social support would be
important to you in combatting the rumination or "chewing the cud" as I call it.
Chatter: I am concerned about how to boost your self-esteem following
surgery. My children had little patience for me when I took so long to recover from
my brain surgery. I felt second rate, like a second-class citizen.
Dr. Wood: What do you think helped you in your recovery from the brain
surgery? What personal characteristics helped you?
Chatter: When I was recovering, I had my father as a role model.
He raised several children in spite of his troubles with VHL. Unfortunately
he passed away recently.
Dr. Wood: Having a mentor that you can imitate is valuable when coping
with stress of any kind. In addition, realistic goal-setting prior to surgery is
important.
Chatter: This VHL group has really helped me too. I am still
hoping to get back to work. Any pointers on how to feel good about myself again?
Dr. Wood: Realistic self-talks. Remember the illness or disease
which results in a temporary illness is an aspect of your self -- not the total
"you". This is a temporary disease management step. Remember all
aspects of who you are. Talk to yourself about them. Visualize them.
Self-esteem is improved when you focus on your spiritual, love, play, and work life, not
just one area.
Chatter: People kidded me about the brain surgery. They said I
had a hole in my head, or wasn't dealing with a full deck. Humor worked for a while,
but not years after surgery. When I heard someone making comments about
"personality changes" I was deeply hurt. It just wasn't true. People
have misunderstandings about brain surgery -- even in your own family.
Dr. Wood: Emotional ups and downs are common when you are faced with a
medical condition resulting in treatment. You may appear to others as though your
personality has changed, when in fact you are having a normal reaction to an abnormal
event. Medicines may have side effects and may affect your behavior, independent of
VHL and VHL treatments. Talk to your doctor about side effects.
Chatter: I took classes at a local community college after my brain
surgery, to keep my mental processes sharp. I did very well.
Dr. Wood: Good coping mechanism! Excellent!
Chatter: I also find that it helps me not to discuss the surgeries
with just anyone. The questions and looks of disbelief can be hard. It's good
to know that I can talk freely with the people in the VHL Family Alliance.
Chatter: I don't want my children DNA tested. I'd rather they
just be monitored. What do you think about DNA testing?
Dr. Wood: Everyone must decide how to handle his or her own disease,
and how they will bring their children along. This is a highly personal process.
There is not a cookie-cutter approach. However, keeping up with accurate,
reliable information will keep you better prepared. In my opinion DNA testing
represents an advance in technology which can be used to prepare, particularly the younger
generation, for better disease management. I like information because it reduces
worry and improves coping.
Chatter: I'm the only one in my entire family who has VHL. I
feel alone in this.
Dr. Wood: Isolation is a common feeling among people with a chronic
disease. The antidote to isolation is activities, physical or social, which increase
energy and the possibility for better coping. The chemistries of the brain require
activity of the body to deal with mood problems. That is: exercise, conversation.
Endorphins are so important to the brain! They are the result of exercise and
contact with people. Introverts seem to be okay with isolation as long as they can
contemplate ideas.
Chatters: Anybody want to share some good coping strategies?
Holidays are tough -- you can say that again! Chatters mentioned using meditation
and massage therapy. Several said they try to stay busy. That helps when
things are not too bad. Another uses guided imagery, aided by an audio tape.
One man went to a training session on "mindfulness" meditation given at a local
hospital. There is also a website that one person found helpful:
http://learningmeditation.com
Dr. Wood: Life in general is difficult. It is especially more
difficult when you have to face your vulnerabilities and limitations. Rational
self-talks, non-judgmental friends, and people sharing with you who have the same problem,
result in the best coping. There is a book I can suggest on relaxation and
meditation: Beyond the Relaxation Response, by Dr. Herbert Benson.
Chatters: Has anyone lost friends because they don't want to hear it?
I think that is what hurts me the most. I just lost a friend who was suddenly
very busy... I think that people are afraid you will ask them for too much.
Another chatter found that some people just can't handle what you are going through.
Some people seem to think they will catch your illness, or maybe we will bring their
spirits down. Some people are shocked when the VHL comes back -- they seem horrified
and they keep away.
Dr. Wood: Often people without VHL are reluctant as a result of their
own fears of helplessness emerging when they meet someone who is faced with such a
challenge. It is helpful if you can reassure them with small bits of information.
In fact most of the cooping with the disease has to begin with the person who
happens to have the disease. It is lonely, scary, results in anger and guilt.
We must help each other.
Chatters: I think you learn who are genuine friends and family.
Chatters: Several people have found that helping others is a big part
of their recovery. One man said that helping with the VHLFA is one way venting in a
constructive way.
Dr. Wood: I conducted a literature search of the psychological
literature prior to this evening's chat, and there is very little scientific research on
the psycho-social aspects of VHL. Most of it deals with genetic counseling and
education.
Chatter: My husband has VHL and he seems to be in denial. We
just found out this year, and he has had all the screening done, but he doesn't seem to
pay much attention to the results.
Dr. Wood: Men are uncomfortable with emotion. But they love to
DO something. So, try to find a way for him to learn about VHL by DOING something.
Talking, for most men, is awkward. Possibly having him observe at a distance
of VHL. For example, having him talk to an expert using diagrams or other graphics
or models, illustrating how the disease process works. It takes a while to absorb
all this new information, to adjust and cope. I am not surprised at his reaction.
This is a very emotional situation and he may not respond as you would like for him
to. Focus more on daily activities with him and turn to friends or the VHL support
group for primary direct support.
I'd like to say something to the family members and significant others on the line.
Keep in mind that the affected person benefits from empathy, not sympathy.
This is good for you, the family member or significant other, because empathy is easier on
you. Sympathy does not work, and almost always results in you feeling angry.
Empathy is when you say to the person who is affected something that lets them know you
heard what they said or felt. You are like a mirror, not a sponge. It only
takes 30 seconds and if you do it a few times a week it's great medicine for
everyone. Empathy is when you can walk a mile in someone's shoes without being in
their shoes. It's not saying "Yes, I understand," it's a genuine
reflection of what the person is thinking or feeling.
Men tend to become more constrained emotionally, women become more expressive.
Therefore the response set is different. You have to take into account individual
differences. You have to look at the gender, and their cultural context.
Often loved ones are too close to the situation to give the primary supoprt.
Often friends, peers, para-professionals and professionals can render support.
Family members can often only provide services support, practical things. Often the
family members need their own support system. We'll talk more about that next month
in our session on "Family".
For all of us, we need to keep an open, flexible mind -- a flexible mind is a
distinguishing characteristic of good mental health in general and in particular when you
have a chronic disease.
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