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Teens With CFS
by
Marianna Hernandez
The teenage years of a person's life are usually categorized as some of the best times of his/her life.
Those are the times, during which they grow up and develop into mature, responsible adults, experiencing
life on a whole different level. They are no longer
children and become completely responsible for their own actions. They start acting independent and move on
to doing what most adults do, such as working, staying up late, and helping to take care of their family.
But, despite all the privileges that adolescents have, there are many hardships and struggles that they go
through every day to earn them. Someone once described a teen's life as a constant roller coaster, filled
with up and downs, never knowing what will happen
next.
Teenagers constantly find themselves under pressure exerted on them by their families, peers, and in everyday life. For most teens today, every living day is an endless struggle to fit in, to be part of the "in-crowd" and not to be portrayed as an outsider.
Unfortunately, peer pressure is an everyday part of life as a teenager, and along with it comes many big decisions. For the first time in their lives, teens are constantly forced to make split-second decisions that will affect their lives. Common pressures include whether or not to smoke, use drugs, have sex, etc.
Unfortunately, the typical wrong choice is most common choice.
Besides peer-pressure, teenagers have to struggle to reach up to what is expected of them by
their parents and loved ones. Everyone seems to have expectations and they expect teens to reach up to
them - whether it is to achieve the highest SAT score,
practice in a particular field, or go to a specific college.
And besides all of this, teenagers have many of their own problems to deal with throughout their
daily lives. So if it so hard being a regular teenager at times, imagine how difficult it is to live as a
teen diagnosed with Chronic Fatigue Syndrome.
I remember when I got sick with CFS, and the date of that life-altering day. Now, I emphasize the word
life-altering because it has definitely changed my life, to which point I will never forget it. I,
myself, was an everyday teen when I was diagnosed with CFS. I was sixteen when I got sick, and almost
seventeen when I was finally diagnosed. For a six month period, I went from doctor to doctor endlessly
searching for the truth about my condition. Two
doctors diagnosed me with having mononucleosis and Epstein-Barr
Virus.
However, their diagnosis was soon proven to be inaccurate by an Infectious-Disease
Doctor at Maimonides Hospital in Brooklyn, New York, who claimed that I had neither and that I was sick
with some other illness he couldn't diagnose. It took another couple of months before Dr.
Rozensvit, a neurologist at the Hospital for Joint Disease in Manhattan, New York, diagnosed me with having Chronic
Fatigue Syndrome, an illness I'd never even heard of
before that time.
After such a long struggle to find out what was going on with me, I was finally happy to learn the truth. Unfortunately, I was wrong to think that there was finally an end to all of my troubles, and frankly, it was just the beginning of another long struggle.
Most teenagers suffering with CFS often find themselves at the brink of disaster. The debilitating symptoms, the unbearable uncertainty of their condition, and the understanding that they are no longer capable of doing everything they used to, drives them and everyone around them crazy.
Teenagers are young, they're vital, energetic, and love to have
fun. No teen in their right mind would ever want to sit home, bedridden, and completely inactive. That's
why most teens suffering with the illness fall into a state of denial (a
stage which may last a couple of
weeks or months, as a teen gets used to living with his/her condition).
They do not want to realize that they're no longer the same and that their bodies have
been robbed of their vitality. Just like many doctors who treat them, they begin to doubt the entire
existence of their illness. Not realizing the damage that they are causing, most teens continue to push
themselves harder than ever to do the things they used to, not realizing that the more they push the more
they exacerbate their condition.
Many teens suffering with CFS were perfectionists and big time
overachievers. They don't realize that their old way of life is no longer useful at the present time,
especially when their bodies are too weak to handle the pressure that was constantly exerted on them. I
myself was a perfectionist, and an overachiever as
well; I always wanted to be the best at everything. My motto was always: "Crawl on your knees if you have to,
but get it done!"
It took me two long and painful years to understand that
everything I knew was wrong. The worst of which was that it was already too
late, I was already sick, and couldn't do anything about it!
At the early stages of CFS, the period of up to six months or more, most teen PWCS live in complete uncertainty about their illness. They might have already been diagnosed and told what their illness was about, but were never reassured that they would completely recover. They maintain hope that their unrelenting torture will end soon, but as in most cases they soon find out that they're no where near recovery.
Yet, as time goes on, and their condition either stabilizes or exacerbates, they finally come to
terms with the cruel reality. As hard as it may be to accept that they are sick and their activities are
limited, they do so for there is no other alternative.
They might continue to push themselves and still maintain their old way of life, but deep down inside they begin to understand they are no longer capable of achieving everything they wanted. Their whole view on life begins to shift, and an inverse relationship occurs.
The more they get into the idea of being sick, the more they start to complain about their symptoms,
which starts to really annoy everyone around them. Their loved ones feel helpless, they see their
suffering but they don't know how to help ease their
pain.
At times, friends get disinterested and begin to avoid them, simply because they seem to be an
anomaly or because they're afraid CFS can be contagious. Not much is known about CFS and many of us
have often wondered ourselves, whether the illness is contagious or not.
Besides having to wake up every morning feeling completely exhausted, unrefreshed, and deprived of any
remaining energy left in their bodies, many teen PWCS start to experience a feeling of complete and utter
loneliness. They start to feel more and more
frustrated about the cruel and negligent treatment, which their doctors provide on the basis of their
sceptical view of the illness.
They feel abandoned by their friends and loved ones that
abandoned them, when they needed them most. They feel isolated from the world around them and trapped in their homes. The
feelings of uselessness and helplessness grow deeper inside them. They lose the urge to do anything, not so
much because they can't, but because they just don't want to anymore.
Who can blame them? A couple of months or even years ago, they were normal, vital teenagers full of high expectations, dreams, and goals to accomplish. Now what? They feel so exhausted that they can't even get up to go to school or even more so, grab a bite to eat out of the fridge, because it takes so much energy to sit up.
They witness their whole life changing before their eyes, and all their dreams and expectations collapse in front of their very eyes. They can't even study normally anymore, because of their persistent headaches and brain fog that blocks their mind from concentrating. That is the most frightful feeling in the world to know that you are no longer able to have a normal energetic life, and that everything you do from now on is limited in one way or another.
They become so angry and disappointed in themselves that
they sink deeper into depression. The doctors, who don't even know what to do with them anymore, just
send them to psychiatrists who claim that CFS is a mental illness and not a physical one. Their families
try to help but either end up helping too much or not
at all.
I remember myself at that stage, and wow! Was that a scary time for me! I had no idea what would happen next and I kept trying to keep myself from passing out at lease two or three times a day because of recurrent dizziness. I felt like the world that I had come to know and love was slowly disassociating from me.
My parents tried to help, but they never really understood what I was going through. My friends kept telling me I didn't look sick and that I complained too much. I started blaming myself for getting sick, I kept asking what if... but I didn't realize then that what really mattered now wasn't what if, but what it was already, that was the cruel and harsh reality.
Someday I needed to learn a way to deal with it, or else I would never get better. It's at times like
these, you just feel like giving up on life altogether. Life becomes too hard and you just can't
take it anymore, and the grave thoughts of suicide begin to kick in. As sad as it is to acknowledge, some
teens with CFS do give up on life and end up committing suicide. That is the worst case scenario.
As for the rest of them, that were just a tiny bit stronger or had other obstacles blocking them from
killing themselves, they continue to struggle and battle CFS to the best of their ability. Someone once
said that life is a roller coaster, well so is CFS. It always keeps you on guard for any onsets or relapses
coming your way.
I, myself, had battled my craving to just give up on life more than once. I've lived in total uncertainty
and isolation, and clustered myself at home for over a year, until I finally realized that I was the only one
who can help myself. No one else would get up and try
to find a way to get better for me; I needed to do it myself.
I have to admit I was pretty lucky though, at least I had one good thing going for me, I was allowed
to have a home instructor by the New York City Board of Education Home Instruction Program. This program
provided me with home schooling for the rest of my
sophomore and hopefully junior year. I didn't need to struggle to graduate high school anymore; I had the
opportunity to learn in the comfort of my own home, for fewer hours than in a regular school.
Unfortunately, many others are not so lucky; they have to keep going to school and struggle with relapses and
constant absences, because their home state doesn't provide a home instruction program for teens suffering
with the illness. I truly hope that this problem will be resolved soon, and that all teens with CFS and
other disabilities will stop being deprived of the education they are constitutionally granted.
It took me one long day of hormonal testing at the New York Methodist Hospital, in Brooklyn, New York to realize that if I will give up and continue to live the way I was living, I will never get anywhere.
Without aid, I began researching this debilitating illness, and started to attend a CFS support group on America Online. The first time I went to the support group, I felt a feeling of hope reawaken inside me.
The people I spoke to understood exactly what I was going through, and they even guessed all my symptoms before I spoke of them. Throughout the entire time I was sick, I felt like a loner and sometimes even an invalid, that no one really helped or understood. Dr. Rozensvit was the only doctor that never doubted the authenticity of my illness and tried hard to help me as much as she could. The rest of the doctors kept implying that I was crazy, and that there was nothing they can do for me.
For the first time in so long, I felt like I belonged and that brought me a tremendous
amount of hope and joy. I started going to the support group practically every day. As time went on, I
understood more and more that the only treatment I could offer any other teens, or myself, were CFS
coping skills. We don't really have any sufficient treatment, at least for now. And, even though there
have been a few new discoveries, such as Dr. Peterson's Ampligen Treatment, there is
still no definite treatment for all PWCS.
One of the biggest and most helpful coping skills for teenagers or just about anyone with CFS, besides
reducing stress, and relaxing, is communication with other PWCS. Teens with CFS need to constantly
communicate with other teens just like them, so that
they can help each other cope, deal with their condition, and gradually heal from all the pain and
loss their illness had caused them.
Communication has a way of bringing people out of isolation and
showing them that they are loved and cared for. Many healthy teens who don't know much about CFS might
consider teen PWCS freaky, abnormal, or even society's outcasts because their social life is limited. But,
teen PWCS are not freaky, and definitely not abnormal. They are in fact, strong and down to earth young
adults that have unfortunately come to face the harshness of reality a bit too early in their lives.
They've survived and battled through things that half of normal teenagers will never have to worry about. In a way that's good, but it also limits their level of understanding. I consider teen PWCS heroes of our generation, for they're the ones who had the courage to pull it through and keep on struggling for as long as it may take. In my experience of communicating with many teen PWCS, just like myself, I've come to meet and befriend many teens, that while constantly struggling to make the best of their "deprived of energy" life, tirelessly try to help others feel better and cope with the illness.
They are kind, altruistic young adults who know the hardships of life and bravely continue to overcome all the obstacles their illness bestows on them. As for me, I continue to learn new ways of coping with CFS every passing day. I will never stop fighting to conquer my illness and I will never rest until I help others just like myself fight it too. It has been a long and tormenting journey, and it's still a long way to go. Only now, I know that there is hope at the end of the tunnel, and that I'll never be walking it alone...
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