Moving Beyond Stigma: Two Reassuring Encounters
The perspectives on schizophrenia I can provide are not those of a psychiatrist, psychologist or licensed clinical social worker, but rather a consumer and family member. I have walked the walk on both sides of the street. As such, I can speak with experiential authority. It is my objective to share with you, as best I can, what my experience with schizophrenia has been like on a day to day basis, i.e., to compare notes with you. I will also make observations about being a family member and advocate based on my own experience. Any observations or comments you choose to make in return will be of great value.
In my recent submissions I have been presenting a short series of blogs portraying the widely varying reactions of others to the fact that I have schizophrenia. These have dotted the calendar from the time I first developed this brain disease in 1956 until the present day. In my most recent blog I presented three encounters with psychiatrists and one with a general practitioner that took place in recent years. The outcomes on these occasions were unsatisfactory. In this blog I focus on recent encounters that have had more favorable outcomes.
I must emphasize that the following are dramatizations of my own experiences and that all names have been changed.
* * *
I entered Dr. Sage’s office and chose the straight backed chair. The black leather recliner was temping, but I didn’t want to get too comfortable. In my search for a new psychiatrist, the last three appointments had ended abruptly with me walking out after five, ten and fifteen minutes respectively.
Dr. Sage started the session with a sensible, yet unexpected request.
“Tell me about yourself and why you are here?”
“We’ve just moved to this area and I’m looking for a psychiatrist.”
“Fair enough. And why do you need a psychiatrist?”
“I need a psychiatrist to prescribe the medications I’ve been taking for years?”
“For what condition do you take these meds?”
“I’ve had schizophrenia for forty-five years.”
Dr. Sage, who had been leaning back in his chair, put my newly created file folder on his desk and leaned forward.
“Let’s start at the beginning.”
“I first became ill when I was thirteen years old. It was on Sunday, April 8, 1956 at 3:30 p.m. I was -
“That you remember the date and time. That you knew immediately that you were ill.”
“Oh, I didn’t think I was ill. It was the date and time that Satan first assaulted me, or so I Thought.
“What happened next . . .
Dr. Sage’s intercom sounded.
“You’re ten minutes late for your next appointment,” his receptionist said.
“Where has the hour gone? Ask her to give five more minutes.”
“Well, Robin, we’ll need to talk again before I can prescribe any medications. Please set up an appointment with my receptionist for next week. Tell her we need an hour.”
“Before you go we need to talk about your insurance. I have to give them a diagnosis. I’m not convinced that you have schizophrenia, so I’m going to put down schizoaffective disorder.”
I left impressed with Dr. Sage. But as I thought about our meeting, I was greatly disappointed with his diagnosis. I certainly did not desire a diagnosis of schizophrenia, perhaps the worst of all the brain disorders, but the last forty years had taught me it was correct. I had been doing well for the last thirty years with the specific medications I was now taking and was frightened that a new diagnosis would inevitably lead to exploratory changes in my medications. I decided I would call in a day or two and cancel my appointment.
The next morning, around ten, the phone rang.
“Good morning, Robin.”
“Yes, who’s calling?”
“This is Dr. Sage.”
I was stunned. Never had a psychiatrist, or any doctor for that matter, called me at home on their own initiative.”
“I’ve been thinking about our discussion yesterday and have concluded that I don’t know enough about your experience to settle on a diagnosis of schizoaffective disorder, or any other for that matter. I cannot rule out schizophrenia. I know you made an appointment for next week. I just wanted to make sure that you keep it.”
As strange as it may seem, this was wonderful news.
* * *
Dr. Bear’s nurse dutifully recorded my weight and blood pressure. 130 over 84 was an elevated reading for me, but only because I took medication for high blood pressure.
“The doctor will be in to see you soon.”
As I waited I looked around the examination room. It contained the full compliment of everything from cotton balls to an ear probe, plus the one thing that every gastroenterologist on the planet proudly displays. The sexless, cut-away plastic model of the human head and torso revealing the entire digestive tract was on the counter next to the sink.
The door opened.
“Good Morning, Mr. . . ah . . . Cunningham.”
“You know the drill.”
I climbed onto the examining table and lay on my left side.
“How long have you had Chron’s disease?”
“Over thirty years.”
“That’s a long time. Crohn’s was identified as a separate disease only a few years earlier.”
“I know. The doctors were very uncertain about my diagnosis at the time.”
“There. That’s done. I find nothing abnormal. Pull your pants up and let’s take a look at your medications.”
Dr. Bear studied my typed list of medications and ailments. I took a seat in the side chair facing his writing table.
“All this seems in order. You take a lot of medications, but these all seem appropriate for the illnesses listed. I’m not very familiar with the first four meds. I assume you’re taking these for schizophrenia and related symptoms.”
“What’s it like?”
“What is what like?”
“What’s it like having schizophrenia?”
“That’s a question I don’t get very often, even from psychiatrists.”
“My aunt had schizophrenia. At least that’s what they thought. She was in and out of the state hospital until they gave her a prefrontal lobotomy.”
“She lived out the rest of her life in the state hospital.’
“I’m sorry to hear that.”
“We, my brother and I, were never allowed to see her. You’re just a little younger than she but seem to be doing quite well. Why?”
“It’s because of the four medications at the top of my list. The first is for psychotic symptoms. The second is for depression. The third is for anxiety. And the fourth is to offset some of the side affects of the first three.”
“You said you have schizophrenia. Why do you take medications for depression and anxiety?”
“With schizophrenia, at one time or another, you experience most, if not all, of the symptoms of all the other mental illnesses.”
“Do you think the conditions are all related?”
“Yes, but no one is sure quite how. “
“Look, I have to see my next patient. You, I would like to see in a month. Give this to the receptionist on the way out and set up another appointment.”
Halfway out the door Dr. Bear stopped and turned to look at me.
“I don’t mean to pry, but would you be willing to tell me more about your experience with schizophrenia?”
“If you’d like. And I wouldn’t consider it prying,”
“Thank you. It’s just that I’ve always wanted to know more about what happened to my aunt. What we were taught about schizophrenia in medical school was obviously inaccurate.”
“There are new discoveries every day.”
* * *
My experiences with family and providers as portrayed in this blog and the two before it are quite different, as the potential consequences might have been. My challenge to the reader is to examine the above, and my previous two blogs, and to speculate about what the effects on society would be if one or the other of these types of reactions were commonplace today.
You will now find among the comments to my previous blog my own thoughts concerning the reactions of the doctors that I “interviewed.”
I urge you to continue reading this mini-series and, in the comments section of each, to post your responses to the questions raised. It’ll be interesting to see if we all arrive at the same or similar conclusions.
Published On: February 23, 2007