I'm Wondering If My Time Will Come
 

        Good afternoon Dr. Lee, Dr. LaMontagne, members of the committee, and ladies and gentlemen. I'm honored to be with you today to speak about my experiences growing up with misdiagnosed CFIDS. Gradual onset CFIDS in adults is difficult and confusing, but gradual onset CFIDS in children can be tragic if not discovered in time.

        My name is Catherine Matheny and I'm not sure exactly how long I've had CFS....

        My earliest recollection of feeling different because of CFS occurred in my last year of elementary school. I had been selected to be a safety patrol, which was a high honor indeed. I'd get up early every morning and strap on my bright orange belt and take my assigned post, so proud of my responsibilities! Midway through the year, our faculty supervisor called me into his office and told me that I was missing to many days of school and he would have to take me off of the squad.

        I was crushed. This was the first time I recall feeling punished for not feeling well. This would be the first time I recall being criticized by my friends for not being around. This was the first time I felt that I could not rely on my body, or on myself. I felt humiliated, scared, angry, upset, but most of all I felt confused. I was trying my hardest, but it wasn't good enough. My friends started to treat me differently. I couldn't stay out and play, I always had homework to catch up on. My teachers started to resent me because I was creating extra work for them. I started to hear comments from other kids. They said I was a "faker" or they called me "sickie." One of my friends told me our homeroom teacher had started to call me the "absentee girl". The more school I missed, the further behind I would fall. In schoolwork of course, but perhaps more importantly, in the realms of every day life. Being able to hang out with friends or to talk on the phone, or to participate in extracurricular activities. People would ask me what was wrong, and Id reply "They don't know yet" and I'd start to cry. Slowly but surely, friends disappeared. I was told -- we can't be friends with you anymore - you are never around. When I could make it to school, I'd spend my lunch hour eating alone.

        Instead of spending time with friends, I got to spend time with doctors. Doctor to doctor, test to test - all having different ideas of what was wrong with me. Mono, sinus infections, allergy flare ups - those were the first diagnoses...

       I tried always to explain to my parents, to my friends, to the doctors, to my teachers, how terrible I felt. But I was never able to properly convey how ill I was. With the gradual onset of my symptoms, I just started accepting my limitations, never knowing that it wasn't normal. I thought that since no one could find anything wrong with me, that everyone must feel the way I did but could handle it better. I started believing those who said it was all my fault , or all in my head, or that I wasn't trying hard enough.

        I felt scared and alone. The harder I tried, the worse I would feel. But I had no options except to try harder. Id go to school feeling miserable every day, with my body wracked with pain and my stomach in knots. Frequently I'd call and beg my parents to please let me come home and rest.

        When I was 15, my illness took a turn for the worse. Cognitive difficulties started to appear and I was no longer able to read myself to sleep at night. I was barely able to read my Algebra text. I felt dizzy almost all of the time and would suffer from hours of severe nausea. I became very weak, and was unable to attend school at all. Still, I was told by doctor after doctor that there was nothing physically wrong with me. I was diagnosed as school phobic, depressed and told that I was simply experiencing "growing pains." I was told I just needed to 'go back to school and have fun!.

        Guilt and blame came at me from every aspect of my life. Everywhere and everyone I turned to for help would tell me that I was the only one who could help myself. I felt imprisoned, being punished for some heinous crime I didn't commit.

        I wouldn't receive my diagnosis of CFS until I was 19. Now I'm 22, and I'm still sick. I'm not as ill as I once was, but not one day of my life goes by that I am not reminded that I am still ill.. All the years of misunderstanding and guilt still hang over me. Knowing what is wrong with me helps, but all of the years I spent alone and confused and blamed for my problems are not that long gone. When I look back over the past 10 years, they are very painful memories. Instead of recalling football games and dances, dating and college, I see endless hours spent alone, feeling very ill. I see all the doctors and the diagnoses, all the treatments that I thought would be the cure. Watching my friends grow up and move on with their lives. This year, I'm watching my childhood friends graduate from college, and I'm wondering if my time will come.

        Thank you.
 

Catherine Matheny grants permission to use this text for educational purposes, with proper attribution. She can be reached at ckm@richmond.infi.net.