my disordered body
Created | Updated Jun 28, 2005
In grade school I was labeled a hypchondriac by the school nurse. I came into the office so much, complaining of a stomach or headache so often that the office ladies even told me what they thought about me to my face. Being an inquisitive but not yet well read child of seven, I asked what they meant by "Hypochondriac." They explained that it refers to someone who pretends they are sick all the time. I was offended, because I thought my maladies were real. Of course, I did really want to get out of school.
I distinctly remember once sharing the nurse's sick room with a little girl from kindergarten. I was about 11 and made only very few trips to the office since my mother had made it clear that there would no longer be any trips home for headaches. This red-headed child had urine stains all down her pants. She was going home. I was not, because I didn't have a fever. I secretly envied her, urine and all. 11-year-olds can't get away with bathroom accidents like five-year-olds can. At least, not without running the risk of a psychological evaluation.
Eventually I became an attendance champ, going to school when the rest of my siblings were laid up with bronchitis or the flu. I rarely got sick at all, and considered myself lucky, since school was an escape from home. This streak continued for years. Rarely sick enough to miss work, church, or chores, I surrounded myself with an air of invincibility, but underneath I still harbored the occaisional irrational fear of unexplained symptoms. Deep down, I was always a little afraid that I had some incurable illness. I sometimes wondered if the school office harpies were right in their label.
Last December I mustered up the courage to get a physical. I scheduled an appointment with a doctor who came highly recommended by a friend. I had never endured the indignity of a gynecological exam but knew that I must get it done eventually, or I might die of cervical cancer without warning. I was terrified but I went through it, discovering at the end that by all appearances I was free of disease. Pending the return of a few lab tests, I could carry on with the carefree knowledge of my own health, continue to feel invincible, and perhaps finally put to rest my life long fear of disease.
A week later, a gentle call from the examining physician shattered my relative calm. He explained that my blood test had revealed a low platelet count. Platelets being the coagulant aspect of blood, he explained, this could mean that my blood doesn't clot like other people's blood. He tried hard not to alarm me, but scheduled an appointment for me to see a hematologist, or "blood doctor." I, in turn, worked hard not to alarm my parents, though I was apprehensive. I researched what I discovered to be an incurable and idiopathic blood disorder. Idiopathic, I learned, meant that no one knew with certainty what the cause of a disorder or disease was. It could be a side-effect of any number of other illnesses, like cancer or HIV. My research was later confirmed by the hematologist, who tested me for practically every disease a person could be tested for. I came up normal on every count, which assuaged my fears of cancer or terminal illness, but still there was this low platelet count, stalking me and stealing my ease of mind.
Immune (idiopathic) thrombocytopenic purpura, otherwise known as ITP, is characterized as a disorder in which a person's immune system attacks its own platelet cells, disabling or killing them. The platelets are removed at that point by the spleen. It is thought to be a mistake often caused by some systemic infection. Once the antibodies are manufactured, they stay in the body forever. In my case, the ITP is not life-threatening. I bruise easily and get tiny blood blisters on the surface of my skin. I have some menstrual irregularity, which is often the symptom female sufferers notice first. In the worst cases, especially in children, blood vessels break all over the body and a person can hemorhage from seemingly small cuts. Some people have their spleens removed and must take immuno-suppressive steroids for the rest of their lives.
Since last December my invincibility has vanished. Some days, though I am thankful for the inseverity of my disorder, I cannot help but think of future dangers. I wonder if it is safe for me to have children, since the antibodies can travel into a fetus through the placenta. ITP tends to be more severe in children than adults. I wonder if it is at all fair for me to take that risk. I think about insurance benefits and premiums and what kind of impact my incurable diagnosis might have, however manageable it may be. At every turn there is a new awareness. Things like irregular periods or persistent bruises cause concern where I had formerly been indifferent, or simply annoyed. I have never so closely monitored my own health as now, when seemingly insignificant things have found meaning in this disordered new landscape.
People tell me I look so perfect, so healthy, so right. They cannot reconcile my outside with my diagnosis. As for me, I find myself longing for the relative safety of my childhood, when sickness was so often only in my imagination. This time, if only the nurse would send me back to class with a knowing look, I'd promise to never fake again.
I distinctly remember once sharing the nurse's sick room with a little girl from kindergarten. I was about 11 and made only very few trips to the office since my mother had made it clear that there would no longer be any trips home for headaches. This red-headed child had urine stains all down her pants. She was going home. I was not, because I didn't have a fever. I secretly envied her, urine and all. 11-year-olds can't get away with bathroom accidents like five-year-olds can. At least, not without running the risk of a psychological evaluation.
Eventually I became an attendance champ, going to school when the rest of my siblings were laid up with bronchitis or the flu. I rarely got sick at all, and considered myself lucky, since school was an escape from home. This streak continued for years. Rarely sick enough to miss work, church, or chores, I surrounded myself with an air of invincibility, but underneath I still harbored the occaisional irrational fear of unexplained symptoms. Deep down, I was always a little afraid that I had some incurable illness. I sometimes wondered if the school office harpies were right in their label.
Last December I mustered up the courage to get a physical. I scheduled an appointment with a doctor who came highly recommended by a friend. I had never endured the indignity of a gynecological exam but knew that I must get it done eventually, or I might die of cervical cancer without warning. I was terrified but I went through it, discovering at the end that by all appearances I was free of disease. Pending the return of a few lab tests, I could carry on with the carefree knowledge of my own health, continue to feel invincible, and perhaps finally put to rest my life long fear of disease.
A week later, a gentle call from the examining physician shattered my relative calm. He explained that my blood test had revealed a low platelet count. Platelets being the coagulant aspect of blood, he explained, this could mean that my blood doesn't clot like other people's blood. He tried hard not to alarm me, but scheduled an appointment for me to see a hematologist, or "blood doctor." I, in turn, worked hard not to alarm my parents, though I was apprehensive. I researched what I discovered to be an incurable and idiopathic blood disorder. Idiopathic, I learned, meant that no one knew with certainty what the cause of a disorder or disease was. It could be a side-effect of any number of other illnesses, like cancer or HIV. My research was later confirmed by the hematologist, who tested me for practically every disease a person could be tested for. I came up normal on every count, which assuaged my fears of cancer or terminal illness, but still there was this low platelet count, stalking me and stealing my ease of mind.
Immune (idiopathic) thrombocytopenic purpura, otherwise known as ITP, is characterized as a disorder in which a person's immune system attacks its own platelet cells, disabling or killing them. The platelets are removed at that point by the spleen. It is thought to be a mistake often caused by some systemic infection. Once the antibodies are manufactured, they stay in the body forever. In my case, the ITP is not life-threatening. I bruise easily and get tiny blood blisters on the surface of my skin. I have some menstrual irregularity, which is often the symptom female sufferers notice first. In the worst cases, especially in children, blood vessels break all over the body and a person can hemorhage from seemingly small cuts. Some people have their spleens removed and must take immuno-suppressive steroids for the rest of their lives.
Since last December my invincibility has vanished. Some days, though I am thankful for the inseverity of my disorder, I cannot help but think of future dangers. I wonder if it is safe for me to have children, since the antibodies can travel into a fetus through the placenta. ITP tends to be more severe in children than adults. I wonder if it is at all fair for me to take that risk. I think about insurance benefits and premiums and what kind of impact my incurable diagnosis might have, however manageable it may be. At every turn there is a new awareness. Things like irregular periods or persistent bruises cause concern where I had formerly been indifferent, or simply annoyed. I have never so closely monitored my own health as now, when seemingly insignificant things have found meaning in this disordered new landscape.
People tell me I look so perfect, so healthy, so right. They cannot reconcile my outside with my diagnosis. As for me, I find myself longing for the relative safety of my childhood, when sickness was so often only in my imagination. This time, if only the nurse would send me back to class with a knowing look, I'd promise to never fake again.
