Neurofibromatosis
can be brutal, not just physically but emotionally. Feelings of
loneliness, emptiness, anxiety, stress, chronic insomnia, suicide are
some of the dark shadows that contribute to the NF predicament. Yes, we
all have our dilemmas in life but in the case of NFers, we have to fear
for the uncertainty of the future every single day of our lives. Most
of we NFers agree that the physical pain cannot even be compared to the
emotional trauma that we have to go through. There are always questions
whirling around in our head.
1. “What’s going to happen to me if I become deaf or blind?”
2. “Am I going to be paralysed?”
3. “How am I suppose to be financially secure since NF will drain the last penny I have?”
4. “What is the longevity of an NF 1 or NF 2 patient?”
5. “How am I to pursue this career when NF is preventing me from doing so?”
6. “Will I ever have a normal relationship? Can I ever be loved unconditionally? Will they accept
me?”
7. “I can’t possibly have children can I? Since I would pass on the disease to the child, it seems
like the most selfish thing to do to a person.”
8. “Should I just end my misery now? It seems so simple.”
9. “What is my purpose in life, to suffer?”
10. “Why does society have to be so prejudice? Why can’t they accept me? Why do I seem like an
alien to them?”
11. “Why can’t I live a happy life? Why can’t I have someone to hold me when I feel at my lowest?”
These are just some of the burning questions that we face everyday.
NF hinders our ability to pursue life to its fullest extent. Can you
imagine life like a ticking time bomb? Ready to explode at any minute?
The anxiety, the pain and not knowing where you’re going or what’s
going to happen to you can result in a suicidal frame of mind. Believe
me when I say, I’ve been there and done that. The worst part was not
having ANYONE to turn to. I had no medication, no counselling, nothing.
I allowed NF to eat away into my soul, I gave it access to mold my
heart into an angry one. I hated NF, I hated what it had done to me and
I hated living in this world. I wanted to die. How easy would it have
been if I just killed myself. No more pain, no more tears, no more
loneliness. I would cry myself to sleep wondering what did I ever do to
deserve this? My family are living healthy lives while I suffered in
silence. My friends were going through many of life’s wonderful
experiences while I was left in the dark. I feared for the worst
everyday. Even as I write this, I feel the emotions running through my
body. I was so angry at the world that I was determined to take out my
anger on the people that were closest to me.
I have read about several depression cases on the main NF Board. It
was quite clear that women were affected more by depression rather than
men. Or do men like to bottle their feelings up? One of the NF members
wrote this post (By the way, this is a man in his 40’s):
” I have suffered severe depression since early puberty cos
of my NF. I have taken a overdose before and tried to hang myself (the
hook on the door snapped)
I am still very suicidal and would take a pill that would kill me in my sleep without a second thought.
Is it fair that I have to live the life I never asked for in this world
of war and hatred along with the uglyness and pain and uncertain future
of nf and the restrictions and finance problems it brings me?
Is it not selfish of those around me to want me to live like this to say that I am the selfish one.
I think suicide is brave! I wish I could find a easy way out.
Please do not mention God to me! That makes me feel worse!
Religion breeds intolerance half the worlds problems are religion, I do
not believe in Gods/Devils/Heavens/Hells. What you see is what you get.”
It is pretty nasty, don’t you think? A few years back, I might have
thought the same way. I did not believe in a God, my reasoning was, “if
God was love, why bring upon the world such atrocities?” I could not
think clearly. My mind seemed to be immersed in hatred for my faith and
the people around me.
What changed my perspective? Certain people came into my life and
showed me that life is so much more than just NF. “Instead of always
complaining about what you don’t have, you should be thankful that you
don’t get what you deserve.” This is a phrase which I live by everyday.
I began to reevaluate my life. I looked at the things which I did have
and I was thankful for it. I learned that NF will only defeat me if I
LET IT. I do have kyphosis but I’m still walking aren’t I? The question
that I used to ask was “If God was love, why bring upon the world such
atrocities?” But now I realised the world’s problems are caused by us.
We bring it upon ourselves and blame it on God which is unfair. Nothing
can stop me from pursuing my dream so long as my faith remains. My
faith is growing stronger everyday and my life seems so much happier. I
believe my purpose in the world is to use my suffering to touch and
make a difference in people’s lives. Spreading NF in Malaysia for one
thing. There was an atheist named Bertrand Russell who once said,
“Unless you assume a God, the question of life’s purpose is
meaningless.”
A lot of NFers consume anti-depressants. I’m not going to fault them
on that because most of them cannot handle the intense pressure that NF
causes. Prozac is famous among them.
It’s definitely a slow process. I do have my days but then again, I
do have friends like Yvonne who’s there for me when I need her. One
step at a time, one little step at a time to a better life. And I do
not take any drugs to numb the pain. I figured that life is what I make
of it, not a pill!
DEPRESSIVE ILLNESSES
Research is ongoing into possible causes of depression and other
mental illnesses. Studies examine the genetic and environmental risks
for depression-both alone and when it occurs with other problems such
as anxiety disorders. Several parts of the brain are under
investigation. Using brain imaging technologies and neurochemical
techniques, scientists are finding that a network of interacting
structures is responsible for our emotions. NIMH says brain imaging
research is revealing that in depression, neural circuits responsible
for moods, thinking, sleep, appetite, and behavior fail to function
properly, and that the regulation of critical neurotransmitters is
impaired. Research is also looking into the role of the amygdala, an
almond-shaped structure deep within the brain. The amygdala is believed
to serve as a communications hub between the parts of the brain that
process incoming sensory signals and the parts that interpret them.
NIMH also says that the the hypothalamic-pituitary-adrenal (HPA)
axis, the hormonal system that regulates the body’s response to stress,
is overactive in many people with depression. Research findings suggest
that persistent overactivation of this system may lay the groundwork
for depression. Other research focuses on the hippocampus, another
brain structure that is responsible for processing stimuli. The
hippocampus plays a key role in the brain by helping to encode
information into memories. Scientists hope that greater understanding
of the brain and how it works can lead to better understanding of
depression and many other mental illnesses.
Treatment options
When depression alone is the problem, treatment options depend on the
severity of the depression. NIMH says that in milder cases of
depression, lifestyle changes, such as getting more exercise, can be
helpful. If symptoms persist, however, behavioral therapy may be needed.
There are many forms of psychotherapy, some short-term, others
conducted on more of an on-going basis. Talk therapists help patients
gain insight into and resolve their problems through verbal exchanges.
Behavioral therapists help patients learn how to gain more satisfaction
from their activities and unlearn behavioral patterns that contribute
to or result from their depression.
NIMH says two of the short-term psychotherapies that research has shown
helpful for some forms of depression are interpersonal and
cognitive/behavioral therapies. Interpersonal therapists focus on the
patient’s disturbed personal relationships that both cause the
depression and make it worse. Cognitive/behavioral therapists help
patients change the negative styles of thinking and behaving that is
often associated with depression. There are also psychodynamic
therapies, which focus on resolving the patient’s conflicted feelings.
These therapies are often reserved until the depressive symptoms are
significantly improved.
Depression, however, can often require more extensive treatment,
such as medications. This is most true for severe depressive illnesses,
particularly those that are recurrent. NIMH says more extensive
treatment can be used along with, or preceding, psychotherapy for the
best outcome. According to the National Alliance for the Mentally Ill
(NAMI), four groups of antidepressant medications have been used to
treat depressive illness:
tricyclics
monoamine oxidase inhibitors or MAOIs
selective serotonin reuptake inhibitors or SSRI’s
norepinephrine and serotonin reuptake inhibitors or NSRIs
NIMH says that if medication is used, it’s most effective when
combined with therapy, so that the medication can help provide symptom
relief and psychotherapy can help the patient learn more effective ways
to deal with life’s problems. It is also essential that anyone taking
medications be aware of potential side effects. Some medications may
interact with other medicine, or even with foods. Some medications can
cause side effects that include dry mouth, weight gain and drowsiness.
Other types of medications can lead to insomnia, restlessness, headache
or more serious concerns. Any side effects should be reported at once.
Medications should also be monitored carefully by the patient’s doctor.
NAMI says, once diagnosed, 80 percent of clinically depressed
individuals can be effectively treated. The thing to remember is that
in many cases of depression, it’s not possible to just “snap out of
it.” That’s why it’s important to view depression as a real disorder
and talk with a doctor about getting proper medical help if you’re
concerned about depression in yourself or in someone you care for.
Source: Healthsteps