femminista: thoughts of a feminist rhetorician

A recent editorial in the NYTimes, The Wrong Place to be Chronically Ill, reports that the US offers lower standards of care than seven other industrial nations. First of all, I realize that health care in the US is much better than the majority of the world and I am thankful for that. At the same time, I'd like to live to be very old and as someone who suffers from multiple chronic illnesses, good health care is essential to achieving this goal. I spend a lot of time in doctors' offices and consider myself to be fairly knowledgeable regarding current medical practices. Yesterday, I experienced once again the low standard of care that I've come to expect in this town. My internist: a)couldn't remember why I was there and didn't bother to look; b) did not read the report from the neurologist and instead asked me questions that were answered there; c) seemed unconcerned that I was running a low-grade fever when my body temperature is usually below normal; d) remarked that I had lost weight then realized that he was looking at my last visit's vitals and realized that I had in fact gained weight; and e) seemed distracted and inattentive. And I was his second patient of the day! Thank the goddess that I have a good neurologist. Is it so much to ask that I received adequate health care. I realize that as medical histories go mine is unusually complicated, but if he can't provide me with the care that I need then why not refer me to someone who can?

And it's not just the health care system that makes it difficult to be chronically ill in this country. For those who, like me, suffer from "invisible" chronic illnesses, we must deal with the disbelief and ignorance of those around us. I'm tired of hearing that because I look good then I must not be very sick. I'm also tired of being discriminated against because of my health problems. So, I'm finally taking steps to gain institutional assistance through disability services here at Purdue. In addition, I am writing a letter to explain that my cognitive difficulties and problems with time management have been because of health concerns and not lack of intelligence or a poor work ethic. Actually, my work ethic has been so obsessive that it has caused some of my conditions to worsen. I'm used to exceeding expectations not failing to meet them. To further validate my health concerns my neurologist has written a letter to the faculty explaining that I have a neurological condition that has affected my ability to perform as a student, particularly because of the cognitive issues involved in a seizure disorder. He was quite helpful and comforting in his understanding, telling me that often people who have not experienced serious illness have difficulty understanding how difficult it is for those who have chronic illnesses. I would never wish illness on someone, but I do wish that people would try to see what it's like to be constantly in pain and have your response to that pain be seen as laziness or lack of dedication. It would also be nice if people realized that for me, taking care of my health is a full time job. For example, yesterday I spent three hours in doctors' offices and twenty minutes on the phone with the pharmacy and this doesn't count the time I spent gathering medical records and taking notes for my own reference, something I have learned is necessary. Today, I will probably spend thirty minutes to an hour in the pharmacy, another hour in a doctor's office, and at least half an hour waiting and having my blood drawn. I'm looking at at least two hours of medical care today and I still have appointments for tomorrow!

I'm done with my tirade, but I do have one last request: Please, if you are lucky enough to be healthy, don't assume that everyone else has that same luxury, because for me, health is a luxury that my body simply can't afford.