In fall of 1994, I was sixteen years old and sick. I had lost a lot of weight, reduced my diet to BRAT and roast chicken, filled a half-dozen stool samples, even tried a few prescriptions — and nothing seemed to help.
By that point I was seeing a gastroenterologist, Dr. C. After a pointless barium enema and follow-through, Dr. C performed a colonoscopy. From that, he gave me a definitive diagnosis: Crohn’s disease (CD).
In a way, I was extremely lucky: I had only been symptomatic for a few months. Many CD patients take years to diagnosis, and have to go through several wrong diagnoses before finally getting the right one. I had only been through a few low-hanging guesses, like giardiasis and lactose intolerance, before Dr. C brought out the ‘scope.
As much a relief as my diagnosis was — and the medicine that came with it — it was also terrifying. I was suddenly stuck with this thing, this name, that would follow me around for the rest of my life, causing problems, causing misery, maybe killing me. It was an incredible jolt: my doctor said a couple words, and suddenly I was a different person, my childhood over.
Dr. C was not the kind of doctor who talked to parents instead of patients. He was always very direct with me, and I appreciated it. But just one time, the day I was diagnosed, he did have a private word with my parents. He told them, “This is his thing — he needs to deal with it.” That, hands down, is the single best thing a doctor has ever done for me.
I had a highly-protective mother — not so much a “helicopter” hovering overhead as an AH-64D Apache Longbow hunting for targets — and the illness thing had her on full alert. She would have been counting my pills and watching me swallow them, planning out my meals, weighing me twice a day — maybe even photographing my stools, if she thought it would help. Instead, she gave me the space I needed to learn to deal with my problems, because Dr. C told her to.
I mean it when I say my childhood ended with my diagnosis. Illness is an adult problem: learning to deal with illness forced me to grow up. Some parents don’t let their kids make that transition (and for young kids, rightly so) — but my parents did. I can’t imagine how psychologically hamstrung I would be otherwise.
There’s another side to this: Dr. C did not say, “This is my thing — let me deal with it.” He did not claim my illness as his problem. He knew he could help, but recognize that it was ultimately my illness. The next year I went to college, and wound up with a doctor who told me, “You worry about school — your disease is my job to worry about.” That guy nearly killed me, and I never made that mistake again.
I can’t remember when my parents told me what Dr. C said — months later, maybe years — but I will always be grateful. That one firm sentence had profound effects on my prognosis, my adulthood, and especially my sense of self. As important as the clinical side of my disease is, Dr. C was also looking out for the inevitable social consequences of my illness — and he helped me prepare for them. I am a better, fuller person for it.
I may be sick, I may be crippled with illness, I may desperately need help — but I never forget that this is my thing, and I need to deal with it.
Duncan Cross blogs from the perspective of a patient at his self-titled site, Duncan Cross.
