Personal Accounts: The Humiliation of a Psychiatry Patient When She Is a Medical Patient
Scleroderma is a rare, incurable disease. Depression is a little more common and also incurable. I have both diseases, and if I could have just one, it would be scleroderma, the rare, incurable one. I know that a large portion of the general population does not understand mental illness. And whether you are depressed, manic, schizophrenic, or criminally insane, some medical doctors treat you as though all psychiatric diagnoses are the same.
I assumed that all medical doctors have some background in psychology. I was sure it was part of their schooling. Am I wrong? Some medical doctors who are aware that you are seeing a psychiatrist will talk to you as if something is wrong with you as a person. On the other hand, people who work within the psychiatry department where I am an outpatient tend to treat patients with respect, which makes the patients feel at ease with why they are there. The amusing thing is that psychiatry department staff often are the most aware of just how "off" a patient may be. Basically, some medical doctors who know that I see a psychiatrist have made me more aware than has the psychiatry department staff that I have a psychiatric diagnosis. It is obvious by the manner in which the medical doctors speak to me.
Years ago, when I went to see a doctor at the university because of stomach pains, he asked me if I heard voices. I was taken aback by the question because I did not see the correlation. I asked him why he asked, and he said that my file showed a psychiatric admission in 1984. I told him that it was because of a suicide attempt and that I was currently seeing one of the university's psychiatrist for depression. I told him I never heard voices. The general public might go through life assuming that psychiatric patients probably hear voices, but medical doctors should not assume so.
When I asked my psychiatrist why the medical doctor questioned me about voices, my psychiatrist said the doctor shouldn't have asked me. The medical and psychiatric files at the university hospital are supposed to be separate. I suppose there is some mention of my psychiatric status on the cover of my file. Perhaps the entire psychiatry file should be in my medical file. Then maybe the doctor would know that I don't hear voices, I don't think I'm Joan of Arc, I don't make up symptoms just to see a doctor—I just find my life to be terribly overwhelming at times. This feeling does not last forever.
About 20 years ago I experienced a depression that was quite frightening because I did not understand what was happening to me. After I told my husband, he spoke to a family member about it, and I was taken to a psychiatrist. Oftentimes after I met with my psychiatrist, he would speak privately to my husband. After several visits to the psychiatrist, I was told by my husband that I would never be normal again. He said the doctor had told him that I would be psychiatrically impaired the rest of my life. The doctor neglected to tell me how impaired I was. I was out of work for months, but I eventually did return to work, and I thought my life was pretty much back to normal.
A few years later my daughter was born, at which point I left my job in order to take care of her. When she was two, I felt I was in another depression. I tried to get help by calling a mental health facility. When I told them we didn't have insurance, they asked where my husband worked. He owned his own business and did not have health insurance, so the mental health facility would not help me, and I attempted suicide.
A year later I was getting a divorce, and that September I started taking courses at a community college. It took me four years of going to school part time to receive my associate-of-arts degree. I graduated looking about seven months pregnant, although I wasn't, and feeling terrible.
My psychiatrist was the one who sent me to see medical doctors to find out what was medically wrong with me. I had several years of tests, and experienced many symptoms, while the physicians were trying to diagnose my condition. But it was my psychiatrist who diagnosed scleroderma when I began showing some of the more common symptoms of the disease. The diagnosis of scleroderma led me to the rheumatology department.
During those years of doctors' appointments and testing before I was diagnosed, I went through some embarrassing situations. In the beginning, the scleroderma left the skin on my face and hands taut. At times my face was almost motionless. I looked depressed no matter what frame of mind I was in. To some of the medical doctors, I simply appeared to be just depressed, and, after all, I was seeing a psychiatrist.
The doctor who was then my primary care physician had asked me to keep track of my girth and weight and to give the figures to the specialist he was referring me to. I did as he told me. When I saw the specialist, he took the page of figures from me, looked it over, and said, "This is the problem." He tossed the paper back at me, insinuating I was a hypochondriac.
At one point I had an appointment with a podiatrist who had a student with him. Right in front of me, he said to the student, referring to people with depression, "You'll find they have pretty faces and ugly feet or vice versa." I was aware I looked like I wasn't all there mentally, probably because of the symptoms of scleroderma, but I was. I was shocked that the podiatrist had made that remark to his student and thought I wouldn't be offended.
I understand that a university hospital has students training to become doctors. It makes sense for the students to see patients before they actually become doctors. But it also makes sense to teach the students that without patients they would have no job, and that a patient is a person who has family and friends just like they do. And it makes sense to teach them that patients need information about their illness. It is also good for doctors who are fully trained to remind themselves of these things.
When I was admitted to the hospital last summer for acute renal failure, no one bothered to tell me why I was being hospitalized. First I was told to come in to have some blood tests redone. Then I was told that I might be staying overnight. The episode turned into a three-day hospital stay, and I wasn't told until the second day that I had kidney failure.
The day after I was admitted, I was approached by a doctor and a student. The doctor talked small talk to me. I thought someone finally would let me know why I had been admitted, but the doctor did not tell me anything. He just turned to the student and said, "I can see that conversation will be two way; you'll be all right"—and he left the room. I do not remember what the student said to me after that. All I know is that if the physician was teaching the student how to test the level of a patient's awareness, he succeeded. He also taught the student how to make a patient feel depressed and uncomfortable, to say the least.
I was hospitalized several times as a child. My hospitalizations ended with an operation on my kidneys. It had been about 25 years since I had been medically hospitalized, but what I experienced while hospitalized as an adult made me feel the way I had felt as a child.
At one point during my treatment for scleroderma, another doctor asked me what I thought my next course of treatment should be. I said, "I don't know, I'm not a doctor." He suggested that I not forget that statement. He responded that way because I had refused to take a medication that my primary care doctor had told me I should not take. There was a student at that appointment, and what the student learned was how to discourage a healthy doctor-patient relationship.
I continue to see a psychiatrist and a rheumatologist regularly. Less frequently I see a dermatologist, a gastroenterologist, and a cardiologist. Due to last summer's hospitalization, a nephrologist has been added to the list. I have not attempted suicide since 1984. It is because I see a psychiatrist that I am still here. I need someone who knows I am in trouble before I get so far under that I cannot help myself.
I wish that medical doctors would respect the fact that a psychiatric patient is willing to admit she needs help and is getting it. It is embarrassment that keeps people from getting help before it is too late. Also, the better I feel, the less apt I am to take in stride the sort of ignorance on the part of physicians that can interfere with my care.
The two doctors that I deal with the most because of the two diseases I have are the most interesting doctors I have met. They are respectful human beings that I will have to deal with for the rest of my life. Fortunately, there are no students around when I see my psychiatrist. At times students have been present at my rheumatology appointments. But regardless of my "attitude," my rheumatologist has always treated me with respect, and I have never been made to feel like a fool. Both of my doctors have been kind enough to realize that there is a person inside this patient.
Ms. Hill, who lives in Worcester, Massachusetts, is pursuing her bachelor's degree to become a patient representative. Contact her in care of Psychiatric Services, American Psychiatric Association, 1400 K Street, N.W., Washington, D.C. 20005. Jeffrey L. Geller, M.D., M.P.H., is editor of this column.
