Struggle to Function- Chronic Fatigue Research France

The Struggle to Function: CFIDS and Fibromyalgia in the Teen years

By: Anne-Marie Vidal

Some are beautiful, several have extraordinarily good grades, and others pursue quieter activities but are living their teen years in their way. In appearance, they are just like any other teenagers; they have a wide range of interests and goals. What differs is their ability to pursue them because they are hampered by either Chronic Fatigue and Immune Dysfunction Syndrome or Fibromyalgia.

David is handsome, and he has a scholarship. He is sought after by both academic and social clubs to run for office, yet his hectic college schedule has been slowing down over the past year. What he has suspected for some time is now a fact: He has been diagnosed with Fibromyalgia. He is familiar with the disease because his older sister also has it and is a very active advocate. Carey works part time in the clerical department for a major law firm; he is ambitious and takes several classes at a nearby community college. While trying to work and maintain good grades, he often feels he is swimming upstream. “The FMS wears me out! I don’t know how long it will take me to finish school; I can’t carry a full class schedule and work.” He is trying to take life one day at a time and has learned to meditate and watch his stress levels.

Although separated by a continent, these young men have the identical adversary. Unlike most of us who look back on our teen years as a time lived in capital letters, full of joy, pathos and new experiences, these young people have the added components of keeping doctor appointments and managing medications. The small events that we saw as tragedies, i.e. not being a cheerleader, losing a boyfriend or even getting acne become more intense when you add chronic illness to the mix. Now those disappointments are complicated by chronic illness. For instance a formerly popular cheerleader must leave the squad because of too many Fibro flares; a young man vying for a college scholarship sees his grades slipping because of CFIDS; or they watch relationships fall apart. Family members become critical of the odd sleeping habits that accompany FMS and CFIDS. At the same time, the effects of the medication are catastrophic to teenagers: the overly round moon face as a result of medications; embarrassing intestinal gas, constant nausea, and complexion eruptions are hard enough to deal with as adults, but much more complicated to the young.

As adults, most of us know already that chronic illness is not conducive to fun. Yet most teenagers are admonished to have “Fun” and be lighthearted. For a young person with chronic illness must try to explain to friends and skeptical teachers that the emphasis on chronic is the “ic.” Worst of all, is honestly having to tell a teacher that you “forgot” a homework assignment while he shakes his head with mistrust wondering why a student couldn’t come up with a better excuse.

Below are the stories of youth who were able to share how their teen years were changed by CFIDS and fibromyalgia.

Hi,

My name is K. I'm 20 now, but I first became ill with CFIDS when I was 16. I got mononucleosis my sophomore year in high school... After my” recovery”, I still didn't feel normal. I went to my pediatrician and an infectious diseases specialist who diagnosed lingering mono and advised me that in a few months I'd be ok.

In a few months I was semi-back to normal; I rested over the summer and went back to school. In about two months I completely crashed. (I) couldn’t get out of bed or do anything. I had swollen glands, low grade fevers, intense fatigue, confusion, dizziness, panic attacks, night sweats, hot flashes, cold hands and feet, menstrual problems, sensitivities to noise/sound, odors and chemicals and medications, and what I now call brain fog, and severe insomnia. I went to a myriad of specialists in Boston and NYC. After a month, they finally just settled on CFIDS.

My parents were very supportive, but it was a very difficult situation. They couldn't understand how I could be tired all the time, yet not go to sleep. I'd watch TV late into the night because I hated sitting in bed endlessly unable to fall asleep, and they'd yell at me that I wasn't even trying. That was a huge hurdle for us to get over, letting them know that I was exhausted, but I also had insomnia.

Many of my teachers who knew me well were sympathetic, and at first, the school was very accommodating. They dropped a few requirements in my classes, and let me take 5 classes instead of 6. However, when I did not recover after several months, the school became very frustrated and told me I wasn't making enough of an effort. I missed 80 days of school my junior year. Some days I could only make it through an hour or two of school. I would have to go to the office and face the vice-principal when I wanted to go home, and he would look at me and sigh, and ask me in a very patronizing voice why I couldn't make it through another hour or two.

My friends also had a very hard time understanding. I was not fun anymore. I couldn't go out on weekends, and if I tried, often I needed someone to drive me home early. Eventually they stopped calling and at school they'd avoid me. A few close friends stuck by me, but by the end of high school, I basically had only three or four people I'd call friends. My social life became non-existent. …I had a boyfriend for about 2 years, and it was frustrating because he couldn't understand the illness, he didn't think that it could possibly be that bad. But, in many ways he was sympathetic and considerate.

My school performance declined... I had always gotten straight A’s. All throughout freshman and the first half of sophomore year, I was either first or second in my class. However, after CFIDS, I couldn't compete. I ended up getting two C’s and many B’s and a few A’s. Although I graduated 6^th ^{in my class, it was very disappointing. I followed through with my plans and went to Georgetown University but my first semester was a disaster. I didn't want to discuss my illness with too many people, and when I eventually had to be hospitalized I had an overwhelming reluctance to inform my teachers so that I could try to make up class work. It took well into the second semester to complete the work.}

… I've learned to manage my time and illness better, I have gotten special accommodations that are quiet and have a kitchen and bathroom, as I'm on a modified diet. I've also opened up to more people about CFIDS.

People always comment that I appear better or I must be better if I'm (functioning)), and it always angers me. If I look good that's one thing, but looking good and being healthy have very little in common when you have CFIDS. …

Rachel H has a part time job and had a flare in symptoms when I contacted her. Yet she took the time to talk and answer my questions.

Q: When did you start getting sick?

I started getting sick my freshman year of High School. I had stopped playing soccer the year before that because of the pain in my feet/legs. But the other symptoms of FM didn't come until my freshman year, when I was about 13.

Q: Were you home schooled for a while? Did you enjoy school before you got sick?

I started independent studies my sophomore year, and did that for a year and a half. I tried going back to regular high school my junior year but that lasted a month and I had to drop out again. I got my G.E.D. sometime later, then eventually signed up for Adult school and finished up my last credits and got my High School Diploma. I loved school, and one of my biggest regrets was not getting my diploma, that's why I went back to get it. I hated saying I only had a G.E.D. when applying for jobs and things. Before FM I loved school. I was in the G.A.T.E. (Gifted and Talented Education) classes through junior high school and always earned A’s and B's. I still plan on going to college. In fact I am quitting my part time job in 2 months and will be going to school full time in January of next year. I'm nervous but excited. I hope I can make it work.

Q: Teen life is usually highly emotional; how do you think your life was different from other teens?

My emotional life was different from my peers because I was dealing with a different enemy than most of them were. While my peers were stressed about homework, their clothes, boyfriends, etc. I was home, alone mostly, worried that I was dying and no one could figure out why. My enemy was my own body and what it was doing to my life. It became depressing fast. I was playing soccer one year and looking forward to joining the High School team one day and less than 2 years later I was using a wheelchair and barely managing to stay awake through class.

The search for answers began, but I kept finding more questions. No one knew what was wrong with me, why I was in so much pain yet I couldn't sleep, sit or stand comfortably; I couldn't eat without vomiting or walk without crying. The pain was unbearable and I was suicidal for most of my High School years. I went 3 years without a diagnosis.

… For three years I thought that I was either going insane, or dying of some rare disease. The night before the doctor appointment that finally gave me a diagnosis, I was writing my suicide letter to my family. "If I don't get any answers tomorrow," it said, "I'm not going to be able to go on like this. If I don't get some sliver of hope tomorrow, my faint light will go out for good." I was worn down, had dropped out of school and was struggling to keep up Independent home-studies. I was in constant pain all day and all night, my feet were frozen solid and brought intense pain up my legs, my stomach would rage with what I now know to be Irritable Bowel Syndrome, and I would go for weeks without sleeping, then sleep for weeks. I spent a good part of my life in bed for a few years.

Then, I was diagnosed with Fibromyalgia. It was a relief but at the same time a new fear. I had heard of it in my search over the last 3 years; but never thought too much (about it)... I knew there were no cure, and no easy treatment… But, at least when people looked at me in that wheelchair and asked me what was "wrong" with me, I could answer: "I have Fibromyalgia." For a brief time I felt hope, that the doctors could help me and I could go on and live my life, I could go back to school. But after months of not improving and getting worse, my hope slipped away. The depression returned but more fiercely this time.

I had this label attached to me now that told me I would be sick FOREVER. No hope of being able to run again, of being able to dance again, no hope of ever being FREE of this worn down, pain filled body. I had to get away. I so wanted to jump off of the bridge and truly am "free", but I couldn't bring myself to do that to my family and so instead I ran away from them. I dropped out of school and moved half way across the country to try and fend for myself. It didn't work out, and I landed in the hospital after a seizure. I ended up in the psychiatric hospital for a month, moved back to my home state and stayed in a day program at a psych. hospital there before eventually moving home again.

… ( There are times ) when the pain is bearable and the depression is hardly there at all, but when I go through a slump when pain meds stop working, or I go too many days without sleep, the depression is back, and I get to thinking about being sick like this for the next 70 years of my life. It's overwhelming to think about that. So I try my best to take it just one day at a time.

Q; were you in an accident of did you experience some kid of traumatic event?

I have a few theories about what caused my fibromyalgia. One is for a few years leading up to it, I always suffered from severe sinus infections. I was on antibiotics all the time during the winter, and right before I really started getting sick I was on antibiotics constantly for a few months. Another is I had a few head injuries in the years leading up to it. As a soccer player I had a few concussions and had a bad concussion from an accident at a park. My pain problem started out in my feet, I have bunions in both feet and have always had foot pain. Then the Raynaud’s began making it hard to walk. The pain moved up my legs, into my hips, and from then on I had pain all over. But it always has been the worst in my feet, legs, and hips.

Q: Are you an only child? Anyone else in your family have signs of FMS?

I have two older sisters and two older brothers. On my mom's side of the family there is no one with FMS, but some history of System Lupus Erymytous (SLE).

Q: Is your family supportive?

My family is as supportive as one can be when you don't know what it is like to be in constant pain all day. They try to understand, sometimes I wish they'd try harder, but I appreciate that they try at all. I am the only one in my family to have a chronic illness so it has been a learning experience for everyone.

Q: Would you talk about how your life changed?

My life took a complete 180 when I got sick. Everything that meant anything to me, that defined me, was gone. I was no longer a soccer player, no longer a student. For a long time I felt like a nobody, like I was completely worthless and a burden to those around me. I still feel this way sometimes, but I have discovered new things to love about myself, and new things to define myself as. I began volunteer work with a wonderful organization that teaches kids about what it's like to have a disability. I took up kayaking as my new sport because it was something I could do without my legs. I started to pick up reading, which was something that I was never too keen on while in school, but with a lot of time in bed, and not very much worth watching on TV, I started reading and now I read a book or two a week. Fibromyalgia has taken a lot from me, but I like to think it's given me more than it's taken. It's given me understanding of people in pain and difficult situations. It’s given me compassion and empathy. It has taught me how to look for and focus on the tiniest light in a very dark time. It's taught me to appreciate things in my life I never took the time to notice before I was sick. Like the bird outside of my window, each magnificent sunrise and sunset, the beauty of the seasons changes.

Having a chronic pain syndrome has slowed down my life a lot, it's given me the time to notice everything around me and become so much more aware. (I am) more aware of my strengths, of my weaknesses, of others’ feelings, my surroundings, and of my precious time here. Having FMS has also brought amazing people into my life that I wouldn't give back for all the health in the world. The people I've met through my volunteer work, and through support groups for chronic pain, I've learned so much from them about life and love and friendships and I am so grateful for them. So, yes, Fibromyalgia has changed my life a whole lot. If I was given the chance I would throw all of this pain into the wind in a millisecond. But, I would never trade in the last 7-8 years of my life because of all it has taught me about who I am, who I can become, and what I can overcome.

Q: Do/did your friends understand?

Some try harder than others. I lost all of my high school friends after I started going to school in a wheelchair and I wasn't so "cool" to be hanging around anymore. My best friend that has been at my side since we were infants (she went to a different school)but disappeared from my life for the first few years I was sick- I think she didn't understand and was too into her own life to take the time to try. A few years into the illness, we reconnected and she's been supportive ever since. … It's hard to meet new people period, because I can't often do anything besides go to work and go home and crawl into bed. And that doesn't (lead) to a social life. So I've learned to work where I enjoy the people and make friends there. My work life has been incredibly supportive and understanding and I've met friends I enjoy being around there. When your work is the only activity that your body can handle (most of the time), it's nice to be able to have a job you look forward to.

Amanda and I corresponded for several months about her illness and its affect on her life. She was diagnosed with FMS when she was 14 after a painful and long bout with Interstitial Cystitis. In her correspondence, Amada demonstrated a concern for others and a compassion far beyond here years. Despite her illness, she began working in her early teens. Due to an unpredictable home life, Amanda sometimes cared for her younger sister or shouldered household responsibilities such as cooking. Her FMS resulted in excessive absence from school which led to her decision to pursue home schooling. Once she turned 18, Amanda moved from her parents’ house to a friend’s.

Recounting the history of her illness she said:

Over the years I have found that my symptoms are getting worse. I have burns on my back from sleeping with a heating pad to my back …when I was 3 or 4, I used to get these cramps in my calves that my mom called "growing pains" I still have them….I had been having this terrible back pain for years and kept going to my doctor and he continued to say that there was blood in my urine but that was “normal” and I must have a urinary tract infection (UTI). .. It hurt to urinate. my back pain was so bad that I couldn’t get out of the bed. … An urologist told my mom that I had a chronic but treatable bladder disease called interstitial cystitis. During a follow up visit to the urologist, I asked him could all this be causing my back pain and make me weak and tired. He said that a lot of people that have IC also have FMS so he referred me to a rheumatologist. During that exam, the rheumatologist touched me in these places that I would learn were tender points and I was crying and begging him to stop. It was so painful. He looked at me and said. ”Amanda, I’m only touching you with one finger.” It made me so upset to know someone could hurt me so bad with just one finger.

My mom is somewhat supportive. She doesn’t really know what I am going through though. I try to explain to her and sometimes she doesn’t understand. When I’m having a fibro flare she will make me do chores, forgetting that I have FMS, and assumes I’m just lazy. But then she brought me two books on Fibromyalgia…

In her response to my question regarding accidents and trauma in her life, Amanda wrote:

I was in a couple of car accidents when I was young. I also had a lot of trauma in my home growing up. I went back and forth between my parents. Both my parents were incarcerated…I was molested twice.

Asked about her social life, this former cheerleader said:

I do hear but you don’t look sick a lot. I wish I was better, but (I am not) people keep saying,”Oh, I know just how you feel.” I don’t have a social life and I don’t have any girlfriends….They don’t understand why I can’t go out on the weekends. I don’t go to parties or drink.

I have a boyfriend. He’s 20 years old. We have been together for 2 years now and he is not only my boyfriend but, he’s my best friend. He listens to me when I am having problems. He takes me to the doctor, and he takes care of me after surgery. He even likes to hear what I learn about fibromyalgia… on the weekends we rent movies and stay home. I can’t even go out to watch a movie at the theater because it hurts to sit in one position too long.

The depression has really started to hit me this year. When I was first (diagnosed), I wasn’t very upset because I was happy that they had actually found out what was wrong with me. But I had no idea that it involved so much. I had no idea how many problems would develop over the past few years. And I had no idea how much it would cut back my socializing. When I was going to school, was so tired when I got home that I would just go to sleep or lay down the minute I got home. I was a cheerleader for 4 years. I was in my most important year in cheerleading (I was captain of my high school freshman squad) when I was diagnosis. I missed so many practices and games that I was dropped from the squad.

Two other teenaged girls Katy and Kristin also talked with me regarding their illness. Like many teen aged girls they often feel inadequate in some areas and extraordinary in others. Although they are friends, their lives are very different even though they are the same age and both have FMS and CFIDS. They meet frequently on the PC to chat, but the difference is Kelly is going to school while Katy is at home struggling with multiple diagnoses and taking as many as 20 medications a day. Katy lives with a working mother who is short on time. Kristin has both parents and they dote on her. She is in college; Katy had to drop out her junior year of high school due to illness and was unable to acquire home schooling. She did get her GED. Katy is hoping for an improvement in her health that will let her attend a local community college. Kristin is trying to convince her parents that her health is sufficient to transfer to the University of Chicago from the near-home private college she attends. Katy must explain to friends why she seldom goes anywhere but the doctor while Kristin keeps being asked why she functions and looks so well.

Like all the young people in this article, they try to explain to family and friends that chronic illness doesn’t go away and that there is no guarantee that they will get better. Most of us already know what this is like.

Interviews Conducted By:
Anne-Marie Vidal
Awareness and Advocacy Coordinator