Hope: from a YPWC
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 pain.
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 m 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 MIND
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 clichˇd as that might sound, it does own a great deal of truth.
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? Whowants 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 accomplishment. I 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 respond.
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 at night.
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 day.
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 question 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 somewhat 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