HOPE: From a YPWC
by Dianna M. Banks
CFIDS first emerged slowly a few years ago gaining
recognition as the "yuppie flu," a luxury illness which struck only well-to-do
young adults. As time passed CFIDS gained validation as an illness elusive to
diagnosis, yet tragically real. Afflicted adults came forward with their
harrowing personal experiences and in turn did receive some reluctant medical
acceptance. With the emergence of CFIDS as a real disease also came the heated
controversy and fierce medical debate which forgot a minority of those also
stricken: the children with CFIDS.
Though their exact numbers are uncertain, many children
and adolescents suffer silently with an illness few know and even less
understand. These children share the same agonizing symptoms as their adult
counterparts, yet they are different. Some are too young to remember the days
when pain only came from a scraped knee or sadness from harsh words. Others,
such as adolescents, question where their childhood went, and wonder why they
are being forced to live in a daze of physical pain and mental anguish.
I was one of those who remembered vaguely what it was
like to play, to have friends: to be healthy. Though I was often sick as a
child, I do remember that inexhaustible source of energy that drives most
children to be physically active. I played, had friends, attended school, and
had a great relationship with my parents. We participated in vigorous
activities, such as skiing and karate.
I describe these things not out of memory, but from
family photos and word-of-mouth. Honestly, I can't remember a time when my
father, my mother, and I did all those things. Before I was even ten, I found
out my mother was sick with CFIDS. I didn't accept this drastic change in my
life, and for a short time, I even rejected my mother. I didn't understand why
my mom was so different from other moms, why my mom was sick. I resented this
because I didn't understand it. Only later would I truly comprehend my mother's
When I first became ill with the same illness that had
struck my mother, I was told I was faking, that I just didn't like school. The
situation was just the opposite. I had always loved school and, being a smart
child, had always done well. Now something was taking that away from me. I was
dragged to every specialist there was and the diagnosis was always the same:
there wasn't one.
My symptoms began in 1987, when I was only eight years
old. I had nausea, joint/muscle pain, headaches, abdominal pain, and of course,
fatigue. Three years later I was diagnosed with Chronic Fatigue Immune
Dysfunction Syndrome, by Dr. David Bell. I was relieved, as were my parents,
that my illness was real. Then the reality of my new life set in.
I missed all of sixth and seventh grade and most of
eighth grade. Since I was mostly bedridden, I needed my mother's help to get to
and from the bathroom. I don't remember much of the pain of those three years,
but I will tell what I can. I wish to tell other adolescents in the same
struggle, that they too can succeed as I have. When I speak of succeeding, I
will try to help you find ways to cope with CFIDS and to take pride in the
strong person you will become as a result of your survival.
DEVELOPING A HEALTHY RELATIONSHIP WITH YOUR
Before you can even begin to cope, you must
find a few things out for yourself. By now you already know that your case of
CFIDS is probably the most devastating event that has ever happened to you.
Realize that, don't minimize the pain in that knowledge. Living and surviving
with CFIDS is a lot like the stages you would experience after the death of a
loved one. You deny it, acknowledge it, resent it, and finally accept it as an
obstacle, or stumbling block, not as something that has sealed your "fate." No
matter how emotionally healthy you are, you must feel your way through each
emotion to find peace. As cliché as that might sound, it does own a great deal
This section discusses the stages of dealing with CFIDS
I personally experienced. They may not be in the same order as you may have
experienced them or maybe you'll find that they don't hold true for you at all.
I do hope that they help you on your own path of coping, or at the very least,
bring you some comfort.
In nearly every tragedy that people encounter, denial is
usually the first emotion one feels. The same principle applies to people
when they are first stricken with CFIDS: "This isn't real." I used to think, I'm
not really sick, maybe I am truly insane. Denial can be spurred on by ignorant
doctors who, without a
concrete diagnosis, claim you are well. You just suffer
from hypochondria, right?
Unwittingly, family might also contribute to this surge
of denial you feel. My father used to liken this situation to a snowball rolling
down a hill; it picks up more speed and it becomes bigger until it's no longer a
tiny snowball. The same applies to your family who want you to be well so badly
that they can disbelieve the evidence before their very eyes. If your family
pushes you to be physically active in a way that you are incapable of, try to
let them work through their own feelings. Don't give the "snowball" more power
to grow bigger. Your family must learn to accept your illness, just as you must.
I found my teachers unwilling to believe in the validity
of my illness. They saw this "straight A student" who couldn't participate in
their classes anymore. Some of them even went so far as to hint that I was a
school phobic. This situation, should you encounter it, might seem very bleak,
but it is not. You must present yourself as someone who wants to learn and is
willing to give his/her best effort to school work. If this fails, be
persistent. Even the most "thick-headed" teachers will eventually meet you half
way with some alternative learning accommodations.
Next to acceptance, getting through the stage of denial
is the hardest step of all. Establishing a good relationship with yourself is
most important. Give yourself the time you need to work through this. I
personally did three things during my denial stage that I regret, but you must
learn for yourself. They include "fighting," "pushing," and "refusal."
These three things are in no way termed professionally,
but I think every YPWC does do one or more of these. "Fighting," quite simply,
is fighting yourself. I often had a two-sided war going inside my head over my
diagnosis. One part of me believed in the validity of my illness and the other
half didn't. I could convince myself I wasn't sick and that I was just
"mentally" ill. "Fighting" is probably the most disturbing part of denial I went
through because there was no escape, no refuge even inside myself when I was
constantly at war in my mind.
"Pushing" is putting your body through rigorous activity
to "test" your health. After diagnosis I gave myself unreasonable physical
goals. I exercised more and gave my body less rest. This sort of behavior was
quite normal (in my
eyes): "Who wouldn't want to prove themselves wrong in
this case? Who wants to be ill?" Not many people do.
I found "refusal" to be quite similar to "pushing" in
that in both cases I went about my daily routines in life. I refused to back off
and give my body the rest it needed. I went to bed at the same time, even though
I lay there for hours. I ran around like every other person my age no matter
what the consequences to my newly fragile health.
After you have overcome denial, which is a lengthy and very painful process,
comes acknowledgment. You know you are sick and give your illness validation in
your mind. Acknowledgment is a mixed blessing to a YPWC. It is heartbreaking for
you and those around you to accept that this nightmare is yours. With the pain
of realization comes some inner peace. Since you are not fighting yourself, your
mind and your body can begin to work with each other in healing.
Discovering that I really had CFIDS (I mean, really
knowing it) was at once both freeing and terrifying. I was free from pushing
against my own body, making it sicker, yet I now realized I had to make many
life changes. My body was not the same, and therefore I was not the same person.
There are two ways YPWCs can experience enlightenment
after their denial, which may have taken months or years. First, is by having
their body give out from fighting or pushing; secondly, they finally hear
themselves. I experienced both. I went through exhausting my body with normal
activity which it was not capable of and I listened to my heart. I knew that no
matter what any one else said, I had enough faith in myself to know that I was
not making this up. I no longer cursed my body for faltering at times and I paid
attention to my pain, adjusting my activity so that I was in sync with my body.
Though I reveled in this new relationship between mind
and body, I still had a lot to deal with. Even if my body recovered from this
illness I knew that my life would never be the same, but there wasn't enough
time for me to think of this. I was in pain, everyday; every waking moment
something hurt me. I needed help to get to the bathroom and taking a bath was an
relied on my mother for my survival. She brought me
food, she helped me to the bathroom, but most importantly, she held me when I
was in pain. I was very fortunate. During realization, YPWCs need someone to
believe in them, to help them not just physically, but mentally. It is
especially important as a parent to recognize this need in your child and to
I found that the power of touch made a world of
difference in my physical and mental anguish. For mental survival, I can not
reiterate enough how important it is to be touched or even better, held by a
loved one. For me, my mother didn't just provide contact comfort, her touch made
my pain less intense, more bearable.
As a YPWC, don't deny yourself this comfort to prove how
strong you can be. People need people, there is no exception to that rule. No
matter how strong you are, strength is found in realizing our basic human
interdependence. So don't deny yourself comfort and relief of your pain, for
valor. A truly strong person recognizes when they are the most fragile.
ANGER AND RESENTMENT
After acknowledgment comes probably the most emotionally
wearing part of coping with CFIDS. Following the acceptance of my illness, I was
furious. I had many thoughts, two of which were recurring for me.
Recollection: I remembered all the times
I'd been sick as a child with a cold or fallen and hurt myself. I had healed
with little time and suffering. Why were things different now? I kept trying to
imagine how long I would be sick with CFIDS and if I would be able to heal
myself so easily. This time I knew things were different: there wasn't any
medication to cure me and no one knew how long I would be sick. I longed for
someone to make this sickness and pain go away, but there was no relief,
mentally, or physically, in sight. I spent my days angry and resorted to tears
Wonder: I had another recurring thought,
when I was very sick, that would give me no peace: "Where was I when this
happened? What was I doing?" I couldn't stop thinking about what I might have
been doing the very instant when this illness took over my life and body.
I was often angry at myself for getting CFIDS. I
wondered if I'd forgotten to wash my hands just once or been in the wrong place,
either of which could have made me sick. I knew this was an irrational line of
thinking, but it is normal. Whenever we, as people, encounter any major life
change we ask "why?"
I still have many questions about CFIDS, but along the
way I have found some answers within myself to the previous questions I'd asked.
When you find yourself wondering how long you might be
sick, you will have to accept the truth: you can't be sure. This is extremely
difficult when we live in a world with such technology that can predict the
weather, days ahead, down to the exact temperature. With CFIDS, a lot is
unknown, and being a survivor of this illness is learning to take things day by
Another answer I discovered regarding the question,
"Where was I when this happened...?" is: you most likely will never know.
Despite this, you must realize that there was nothing you could have done to
prevent this illness from infecting you. CFIDS is not a punishment for
uncleanliness, bad deeds, or bad timing. You are the "victim," with regard to
the responsibility for your illness. I use the word "victim" only to convey a
point, because I do not see myself as a victim and neither should you. A victim
is helpless and I am not and neither are you. YPWCs can work within the bounds
of their illness and still achieve their hopes and dreams. Accomplishment of
this idea makes them survivors, or people who triumph over adversity (CFIDS) to
live their lives to the fullest.
I left this question its own section because I'm
convinced it is the biggest inquiry people suffering from CFIDS have. This
question tortured me for years. I would lie in my bed and the words "why me?"
constantly reverberated through my mind. What had I done to deserve such an
undignified and painful fate? I had several theories on why I had become sick.
"I'm just not worthy of health": I
continually told myself that I had done something in my life to have been
dealt such a cruel hand. For years, I regret to say, I actually had myself
convinced that I had committed some terribly wrong deed and I was being punished
for it. I got to a point where I sometimes refused medication for my pain
because I thought if I just suffered, my ill deed would be
purged. This sort of response is very negative and can
only bring pain. If I can offer any comfort in this area, let me reassure you
that CFIDS is not a punishment for anything you did. This is an unfair deal for
anyone regardless of their past. No one is to blame.
"Why don't the 'bad' people in the world have
CFIDS instead of me?": If YPWCs must accept that CFIDS is not a
punishment doled out to them, it wouldn't make sense to have this illness given
as a punishment to another "more deserving" person. Sadly enough, I have noticed
that most of the people I have encountered who have CFIDS are some of the most
intelligent and kind people one could ever hope to meet. This is a gift in a way
when you consider how great it is to receive support from such people.
"Is this an omen or divine punishment?": I
believe this to be a very critical question that nearly all people with CFIDS
ask themselves, regardless of how ridiculous it may sound to others. I found
myself asking this quite often. Had I done something wrong (sinned) or was this
an omen that I wasn't worthy of health? Whether you are religious or not, you
must believe that no supernatural power(s), I believe, would purposely make you
suffer on a daily basis as you do. Some people I've met consider their illness a
test of their personal strength and kindness to others.
When faced with a chronic illness, or any major life
change, acceptance of this change is a very important step toward inner peace.
With acceptance comes the relief that you will no longer fight your body, but
recognize that you do have certain limitations. With this final mental step you
come to understand that you don't need to conform your life to the boundaries
that CFIDS gives you. You will be able to appreciate the strength of your body
when you are having a good day.
When you have gone through all of the steps I mentioned
previously, your mind will naturally end up at the stage called acceptance.
Don't force yourself prematurely into this step. Let your mind work through
things in its own way and on its own timetable. Each person is different,
therefore the period of time needed to reach this step is different. Some YPWCs
could take months or even years.
In my case, it took me at least five years to accept
CFIDS as a part of my life. Over the last few years, reaching this stage has
brought more peace to my mind and body. You can expect to have lapses into any
previous stage. Try to just accept this and realize you have a right to feel
that way. Take a few minutes to say to yourself, "Hey, this really stinks. I
deserve better, I hate this damn illness." Just let your mind work through each
emotion you encounter.
A gift that comes with reaching acceptance is being able
to focus more on the world and people around you. When you first become ill,
your body and mind are forced to avert all attention inward for healing. When
you reach acceptance, you are able to clearly look around your world and realize
things you hadn't noticed before. First, the world has continued around you,
even though it feels like it had stopped with your illness. Knowing this, put
yourself into the real world again. Continue with school, your hobby, etc. Most
importantly, you can now see how much your family and friends have been through.
Hopefully they've been there for you, supporting you during your ill health.
Realize that people care about you and are willing to help. Take a minute to
thank them for their love. Then take the hand that is offered to help you -doing
so is the greatest part of acceptance, which is realizing that you don't have to
face CFIDS alone.
In conclusion, there isn't any specific time limit on
how long it takes to get through each of these stages of emotional conflict, nor
must you experience all of them. It is important to remember the physical part
of your being as you work out all of these tremendous thoughts in your mind.
After I experienced each stage and gave each one my full attention, I found that
I could better work with my body to cope with this illness. I discovered
that my mind, body, and spirit were all connected and that I had to take care of
each to reach complete health.
Despite the difficulty of working through each stage of
CFIDS acceptance, it is worth the results. The mind has so much power over the
body that doctors, with their modern technology, don't even know about. Working
through each of these steps will eventually give you inner peace and then you
can begin to work on healing your physical self.
DEVELOPING A HEALTHY RELATIONSHIP WITH YOUR
BODY: THE CFIDS DAILY LIFESTYLE
Now that I'd worked through, or at least started to work
through, the mental pain of dealing with CFIDS, came the easier part for me:
helping my body so that it could, in turn, help me reach my goal. My goal was
simply to get better using whatever techniques and strategies I could utilize.
Since there weren't any tips or suggestion for PWCs, I had to devise my own plan
of battle against this illness.
What I learned from being bed-bound right from the start
was that lying around in bed, with no stimulation or pleasure in my life, was
hurting my body more than helping it. I found that I became more tired and even
more depressed. I wanted to change this, but I had limited resources to draw on.
My body was weak and I had little motivation.
ESTABLISHING A ROUTINE
Using the idea that staying in bed in my pajamas all day
wasn't helping me, I came up with a schedule. This may sound like a lot of
effort for someone who is very sick, but it's well worth the rewards.
To develop a way to cope with "The CFIDS Daily
Lifestyle," as I call it, I began to try to wake up at the same time
every day. This is extremely difficult to attempt, especially when you've been
up until the early hours of the morning with pain, but it gave me some feeling
of power in my life. For the first time I felt as if I was controlling my own
actions, that CFIDS wasn't calling all the shots any more. This is very hard at
first, but be patient with your body and give it time to adjust to just getting
out of bed.
After getting up, my routine included washing my face
and brushing my teeth. This may sound ridiculous to people without CFIDS, as
well as to you, because nearly everyone takes these simple chores for granted.
Once you've had CFIDS, they become major chores, requiring much effort. Next I
brushed my hair, sometimes I even got dressed. "Getting dressed" for me, when
I'm sick, is as simple as putting on sweats. It isn't so much the clothes you
put on as it is the feeling of accomplishment and control this simple act gives
you. Add your own parts to your personal hygiene routine, but remember to choose
simple goals and make sure that you always do them. Even
on a down day, this may be enough to lift your spirits. Your mind needs
something familiar, some continuity to maintain emotional health.
MODERATION AND EXERCISE
In going about the rest of your day, even if you can't
get out of bed for a short amount of time, the key to anything with CFIDS is
moderation. Doing things in moderation, or small amounts, may allow your body to
be able to do things you didn't think were possible right now. If you feel well
enough, take a walk, leave your bed for a different area of the house, anything
in small amounts. I'm not saying to begin walking miles everyday, but do a
little of the things you want to do while maintaining self-control. Self-control
is vital when dealing with a CFIDS body. While you may feel temporarily good
taking that long walk, you may use up all that precious energy that you could
have used to accomplish something else you enjoy.
MAINTAINING MENTAL FUNCTION
What I've found is more important than physical health
is maintaining mental alertness. While the power you have over your mind to
focus may be limited on certain days, it is important to use it anyway. Play a
mind twister game, do a puzzle, or find a hobby that doesn't consume too much
energy. My hobby when I was very sick was collecting dolls and teddy bears, so
that even when I wasn't well enough to play with them, I could still look at
them from my bed. Whether it's stamps, game cards, comics, etc., be sure to
stick with something that brings you pleasure, which will help you retain mental
alertness no matter how sick you are.
SLEEP: COPING AND CHANGING
CHANGING YOUR SLEEP HABITS
The most challenging obstacle I've overcome, without a
doubt, has been learning to cope with the sleep problems which are greatly
caused by CFIDS. At my sickest, I was perpetually exhausted and lethargic, yet
going to bed yielded little rest and caused me the most frustration. For
everyone, sleeping is a vital
reprieve from the physical and mental strain of the day.
For the person with CFIDS, sleep becomes even more crucial to repair the daily
aches and frustrations of dealing with the illness.
The YPWC has no lack of need for rest, but often going
to bed just ends in tossing and turning and a feeling of exasperation in not
being able to "handle" CFIDS. During the day you might, with great effort, be
able to cope with the pain and mental fatigue of a chronic illness, but even the
most seasoned veteran is exposed to the heightened awareness of the symptoms. A
PWC's desperate night struggles are easily understood using common sense.
By the time the body is ready to sleep, its weariness is
a signal to your brain that your threshold for any sort of strain has been
exceeded for the day. Pair physical fatigue with nightly CFIDS aches and
feelings of isolation from others who are sleeping, and nearly everyone can
appreciate the YPWC's plight.
The first step in gaining control of your sleep
patterns, and thereby getting more control of your life, is to once again use a
schedule! Make a chart of the time you go to bed. At my worst, I was going to
bed anywhere between 5am and noon. Mark down your "bedtime" and then find out
what your "wake-up" time is. Mine was around 5pm. After writing all this down,
you will then notice a consistent pattern of how much sleep your body now needs.
Now comes the hard part: moving back those hours to
begin a new sleep rhythm for your body. Let's assume you went to bed at 3am. By
implementing your new schedule, put yourself to bed at 2:30 am for a few days.
Don't be disheartened if you have trouble sleeping or all is not accomplished in
one night. Be forgiving with your body, it needs time to adjust to this new
schedule, as it changed with the initial invasion of CFIDS. Take a week at a
time for each whole hour you move back. If this is successful, your time
of waking up should move back also. Perseverance is the key to changing your
sleep. The rewards are well worth the struggle.
COPING WITH YOUR SLEEP
There are many problems that CFIDS throws at your body
to disturb its sleep, but fortunately, there are just as many things you can do
to cope with these intrusions upon your rest. These are just a few of the tips
I've discovered (maybe others use them also) to maximize
the amount and quality of sleep I've gotten through various stages of CFIDS
severity over the years. These ideas can be used to help get you through the
rough spots when changing your sleep schedule or to help you if you're too sick
to work on your schedule right now.
If you've already changed your bedtime, congratulations,
if not, have a specific bedtime anyway. For the sake of your body, try to
maintain continuity when deciding what time to turn in. Even if your bedtime is
4 am, stick to that time and temporarily let your body adjust to this new rule.
A great way to induce sleep is to have a ritual in which
you prepare for bed. If you have the energy, take a bath each night. The warm
water will slow your body down and raise your temperature, which automatically
signals your brain that it's time to get to sleep. Another ritual might include
reading a few chapters in a book each night before bed. I wouldn't use TV
because of its stimulation through sound and bright lights. It will just tell
your brain to click right back on.
Another tip for insomnia related to CFIDS is to keep
your bed off-limits during the day. This is not possible for those who are very
ill and need strict bed-rest, but there is a reason behind this tip. If you
spend all day in bed or simply lie in bed reading at night, there isn't any way
for your brain to know when it's a good time for sleep. If you are limited to
lying down, lie on the living room couch or sit in a comfortable chair during
the day. By using this idea, I trained my mind to realize that when I'm lying
down in my bed, my body wants to sleep.
No matter what your patterns of sleep are, be patient
with your body. While it's easy to lie awake at night and dwell on CFIDS related
problems, you must have the confidence in your body that it knows what it needs
When it comes to tackling the CFIDS sleeping problems,
you must strike a balance between the control you exert over your sleep and
allowing your body the rest it needs to fight this illness. Learning to listen
to your body's needs is the greatest accomplishment a person with CFIDS can
have. When all else fails, the light of day will always show up soon.
CFIDS AND THOSE AROUND YOU
When one is diagnosed with an illness, they tend to
focus on themselves and how it affects them personally. This mechanism is not
selfishness, it is simple human behavior which has adapted all of us for
survival. When stricken ill, we must be short-sighted and focus on our goal of
regaining our health. With most people who are afflicted with a simple cold,
this process takes several days or weeks before their goal is attained. When a
lingering illness, such as CFIDS, is diagnosed, that person is forced to look
into a future of several years in dealing with it. Learning to grapple with
future prospects is good, but sometimes we need to look not forward, but around
us. When this occurs, is the time when YPWCs realize that they do not suffer
CFIDS AND YOUR FAMILY
Of all of the people who will be touched by your
illness, your family is hit the hardest. They have known you for many years and
have come to love you for the person that you are, so they are directly affected
by this illness. Your family includes your parents, your siblings, and others
close to you. As the person stricken with CFIDS, your goal is to help them to
understand and cope with your illness as you have. Each member of your family is
different and each has different levels of intimacy with the others. Recognizing
this basic fact will help you in your pursuit of a relationship with them.
As a YPWC, your relationship with your parents is most
likely under a great deal of stress. This is completely normal, considering how
all of your lives have changed so drastically. Since each of your parents is an
individual, each will react differently to this change. Your best hope of
reaching an understanding is to discover what feelings are eliciting that
When I was diagnosed, I was fortunate in the fact that
both of my parents believed in the validity of my illness. I had other obstacles
to overcome in dealing with them though because both reacted differently. My
father took a very masculine approach in dealing with me being ill. He would
insist on having me in bed at the same time every night, even if I wasn't
tired. I remember lying awake for hours, unable to sleep and feeling very alone.
Later, my father
realized the error in this and took a more gentle
approach to my illness. My mother was forced to care for me as if I were an
infant and truly took on the role of a protective mother. Over the years of
dealing with CFIDS and how it related to their child has helped them both refine
their style of parenting to accommodate this major part of my life.
When trying to understand why parents react in a certain
way, keep this thought in your mind: "I am their child." When you remember this,
you will be able to comprehend how difficult it is to see someone that you love
very ill and understand their feelings of hopelessness. When you are finding a
parent is approaching a CFIDS-related matter in an unconstructive way, gently
suggest the course of action that would make them most comfortable. Remember to
always keep the lines of communication open. No matter what the problem,
communication among the members of the family is the foundation of a healthy
One of the most challenging social problems for a YPWC
concerns friends. The two main questions I often found myself wondering were:
"Do I tell them I'm sick? Should I still set up times to see them?"
The answer to the first question depends on several
factors including the amount of intimacy involved in the friendship and how you
want to handle this situation. I personally tried to hide the nature of my
ailment from my friends for a while, because of my pride and fear of the lack of
understanding I might receive. If you call someone a "friend," then you most
likely have a pretty good idea of how that person might react to the news of
your illness. A lot of people will stick by you and support you, but in reality,
others will not. While this turn of events is painful, keep in mind two things.
First, this person that rejects your friendship may not be good with dealing
with sick people. They feel at a loss for what to say or do and are frightened
away by their own confusion. Secondly, if a "friend" reacts to this news by
breaking your friendship, take some comfort in the fact that they probably
weren't worthy of your friendship. Dealing with CFIDS will prove time and time
again who your friends are, and who aren't.
If you tell your friend, and your relationship continues
with this person (congratulations, you have a true friend), then you will most
likely wonder if you should continue to make plans to see them. Sometimes you
will make a time to see a friend and not be able to go simply because you aren't
feeling well. When this happens, don't be harsh on yourself or resent your body,
it just needs rest for the next time you go out. Just explain to your friend
what happened and they will most likely understand. Never, ever let CFIDS make
you isolated from the world and the people in it. You deserve to be loved and
have fun, so set up those times to hang out and go for it.
Another difficult area for a young person with CFIDS is
interaction with teachers. In reality, you must prepare yourself for a possible
negative reaction. There are many understanding people in the world, especially
teachers, but realize that you might not have one of these people as a teacher.
I don't mean to sound disparaging, but CFIDS teaches us to be realistic and
accepting of the more unpleasant realities of life.
The first step in developing a beneficial relationship
with your teacher is relatively simple. Be yourself. While you may be having a
bad day due to your health, show them how hard you strive to learn by doing your
best on all homework and tests. The second part is more difficult if you're shy;
participate in class. This is very difficult for me, but teachers look for more
than good test grades. They look for those students who show interest in their
lessons. Above all, try as hard in class as you always have and your teacher
will most likely see this effort, which will make it easier for you to get help
One of the most important parts of receiving a good
education as a YPWC is to be informed. As a person with an illness, you must
research, understand, and implement your rights as a student. There is
information available to discuss with your parents so that you can be your own
Above all, when dealing with school officials and
teachers, keep in mind that most truly do want to help you get the best possible
education. If you try to achieve to your highest personal standards, these
people will see that in you and often go out of their way to help you in your
Hope: the word that keeps all of us, including those not
stricken with CFIDS, going. If you are reading this article, you have
demonstrated that you have hope for yourself and your health. You are trying to
help yourself and those around you to understand the power of determination and
hope in facing a devastating illness. As you utilize the tips you have read here
for coping, there are a few basics to keep in mind.
You are a stronger, better person for having not
just living with, but triumphing over CFIDS.
Although it often sounds cliché, when you hear that
horrible adversities, such as illness, make you stronger, it is true. By being
ill, I found parts of spirit that I never knew I had, which I used to fight my
way through CFIDS. This form of inner strength lies within you also, or you
would not have gotten this far. Fighting this illness separates the strong from
the weak. Some people have likely given up all hope, but simply by reading this,
you have proven that you have not. This strength will make the other burdens in
life, that we might come across, less intimidating and terrifying. Also, being
sick has awakened within all of us a great compassion and understanding for
other people in the world who also suffer. This will benefit you not only in
understanding other PWCs, but it will allow you to extend a helping hand to
another human being in pain, when a lesser person might avert his gaze. Reach
out to others with one hand and let the other be held by one who wishes to help
We always have hope and no force in the world, not
even CFIDS, can dim its power to motivate us.
No matter how sick you may become, never give up your sense
of hope for something better. Even when you are too sick to move your limbs in
bed, remember to hope. When you walk on those very limbs again, the powerful
concept of hope will be more deeply etched into your spirit. When all else
around is gray, remember to keep your spirit alive with hope. No matter how bad
things get, keep in mind to always have that hand extended to someone else in an
offering of hope and your other hand will never be far from someone who is
willing to help you to your feet.
copyright 1997 Dianna M. Banks