Kate's Story

I believe that stories are healing. They can evoke laughter, sadness or inner reflection. They have the power to help us understand others and to lead us to an understanding of ourselves.

The C. Everett Koop Institute has supported my work with the Steps Towards Adult Responsibility (S.T.A.R.) program for teens with chronic illness. In this work, I am able to use lessons I've learned from my experience with chronic illness to help other young people who face similar issues. A large component of my project has involved an exchange of stories: among teens, between teens and college student mentors, and between all of these young people and those that are ready to listen to- and hear- what they have to say.

I was diagnosed with Sjogren's Syndrome, an autoimmune disease in which the immune system attacks many of the glands in your body, when I was seventeen. In high school I was a very competitive athlete- a swimmer- and so I wasn't worried in the winter of my junior year when I was suddenly tired all the time and started to get a lot of aches and pains. I just thought I was training too hard. However, this escalated to the point where I could barely do my swimming workouts, my glands and joints swelled up, and I was getting high fevers almost every day. In March, my doctor told me I had mono, and I figured it would go away in a few weeks. But a few months later, my condition had deteriorated, and I began the long process of visiting over ten specialists, all of whom had different opinions as to what was ailing me. I listened to speculations on everything from chronic fatigue syndrome to lymphoma. Finally, in November of my senior year, one of the glands in my neck- a salivary gland- grew so huge that I had to have it surgically removed. After its removal, doctors examined the gland and discovered that it had been attacked by my immune system, and this led to the diagnosis of Sjogren's. This explained my constant eye, throat and sinus problems, since in Sjogren's, all of these tissues are damaged.

Meanwhile, I was getting worse. My joints continued to flare up, and blood tests now indicated that lupus, another autoimmune disease in which the immune system attacks the joints and organs, was a factor in addition to the Sjogren's. Things got really bad when doctors started treatment using high doses of steroids and other immunosupressive medications. My ambushed immune system became an open door for pneumonia and other nasty infections. I was in a great deal of pain, couldn't read or concentrate, was indescribably exhausted and kept going in and out of the hospital. I became emotionally drained and depressed as I was told that I would always have these problems; this is the first time I understood what "chronic" meant, and in my opinion, the future looked bleak. I stopped going to school in November, and never returned until May of my senior year. My fast-paced life of academics, swimming and friends faded away completely. I was the captain of the swim team, but even if I could make it to a meet, I could only sit on the sidelines and try my best to look enthusiastic.

A common trait shared by most autoimmune diseases is the tendency of the symptoms come and go and wax and wane, so that you're always in a state of uncertainty and are never sure when you'll have a flare-up. What's more, the drugs don't really help fix the underlying problem but still manage to create such severe side effects.

So I made it clear to my doctors that in my case, the drugs were more damaging than the disease itself was, and I was slowly able to get off the steroids. Only on medicine for pain at this point, I embarked on a quest to improve my attitude, because I finally realized that being negative wasn't going to get me anywhere. A turning point came with the help of audiotapes I received about the intricate connectedness of the mind and the immune system, which encouraged people with cancer, autoimmune diseases and other problems to think optimistically and to use positive mental images. I began thinking "good thoughts" and setting goals for myself. I spent a lot of time talking to others with chronic illness. I took better care of myself and made an effort to keep up connections with friends. Little by little, the infections went away, the severity of the flare-up began to subside, and my body began to settle down. Again, the nature of an autoimmune disease is to come and go surreptitiously, so there was plenty of disagreement among my doctors as to what caused my improvement. I certainly don't think it was the medications, and I am now a fierce proponent of the power of the mind to heal. I was able to catch up in my required classes by the end of the year; I graduated from high school on time and headed to Dartmouth College in the fall of 1995.

Not that I was cured- in fact, I still have frequent symptoms, still take some medicines and go through occasional flare-ups. My freshman year in college was rough, since I was adjusting to being away from home with no doctors and no parents. When I first arrived, I thought there was no way I could do the whole college thing and manage my medical problems. I am now 21 years old and will be a senior in a few months, and I have found the independence of college to be a source of empowerment, because I have total control over my health and have shown myself and others that I can handle it.

Moreover, I have used my experience as a springboard that has launched me into new avenues and activities. I am planning to attend medical school after Dartmouth, and if this goal wasn't a direct result of my health battles, it has definitely been fueled by them. I have become quite devoted to chronic illness issues and currently lead a discussion group for other students at Dartmouth with various medical problems. My experience has inspired me to do a great deal of work in the health care setting, including working in the Koop Institute's pediatric ArtCare Program.

Most recently, I have set out to develop some outlets for teens with chronic illness, including the mentoring project that I'm in the process of starting up with Dr. Mark Detzer and the S.T.A.R. Program. In this project, Dartmouth students with chronic health conditions become mentors for local teens with chronic illness who are treated at CHaD, the Children's Hospital at Dartmouth. For this project, I've been working with teens who have cancer, arthritis, asthma, Crohn's disease/colitis, heart conditions, cystic fibrosis, diabetes, spina bifida, cerebral palsy and epilespsy, but the S.T.A.R. Program is designed for teens with a huge variety of medical conditions. I've also been developing resources to make the inpatient stay at CHaD easier for teens, and on gathering the stories of the teens in the S.T.A.R. Program, which you can read on this site. My work with Dr. Detzer and S.T.A.R. is very rewarding, since I know first-hand how difficult it is to be a teen with a medical problem that interferes with your schoolwork, activities, sports and social life. For this age group, emotional and social support is especially important and should be as much of a focus as medical treatments.