Michelle Mayer had to become a difficult patient to secure adequate health care for a misdiagnosed illness that actually turned out to be scleroderma. She has a blog, Diary of a Dying Mom, where she discusses her own case and the larger policy issues of how health care is managed — or mismanaged — in this country.
I’ve seen the necessity for being alert and my own advocate while hospitalized for the last part of my ulcerative colitis. There was the critical information that, at the time, seemed trifling: the acquisition of a sharp pain in my shoulder during a shower. What it suggested to my internist was something I had not considered for a moment, that my inflamed and weakened colon had perforated. Follow-up X-rays and a CT scan confirmed that, and set me up for an emergency complete colectomy. At another point, I requested the re-insertion of a naso-gastric tube to reduce the chance of vomiting during my recovery. At another, I refused to take a provided medication that didn’t match up physically to the shape and color of the pill I was expecting.
Mayer’s sojourn covers far more ground, though, as her case pitted her against the policies that make doctor-patient interactions fleeting and cursory. My own case had something of the inverse problem Mayer had. For Mayer, an early diagnosis of a more minor malady prevented the attention needed to make the real diagnosis of a major illness. For a couple of years, I had an internist who refused to believe that I actually had an ulcerative bowel disease, until I presented at a colonoscopy with a full-blown flare-up plus a Clostridium difficile infection on top of that. (“You’re sick,” was his simple admission that the previous five doctors had not gotten it wrong.)