Facts vs. Interpretation

Your interpretation of what you see and hear is just that – your interpretation.

– Dr. Robert Anthony

 

And doctors are very good at "interpreting" what they see and hear, to mean what they want it to, and not what the patient is trying to convey.

If the doctor expects to see a woman who, like his own wife, got married so she could stop working, then he will interpret any married woman’s complaints as an attempt to quit working. It went completely past him that I was still working despite the difficulties, that my boss had told me that I would lose my job if I didn’t get the problem fixed, because he "knew" that my goal was to stop working. If getting rid of my job were my goal, why would I be so upset that this damn disease was threatening my job? That didn’t register. Nor did it register that I’d had symptoms months before the wedding. He had an explanation that made sense to him, and didn’t need to listen to the patient.

If the doctor expects to see a depressed divorcee, because he "knows" that all divorced women are depressed, then he’s going to re-interpret everything you say to make it fit what he expects to hear. I was told "nothing you said made sense" ... because I make a point of reporting those symptoms that differentiate CFS from depression, and he couldn’t sledgehammer what I was saying into the matrix that he wanted it to fit into. Obviously, if what the patient was saying didn’t make sense, the problem was with the patient’s ability to report symptoms accurately, and not with his diagnosis being wrong. As far as he was concerned, he was right, and all the previous specialists who’d diagnosed CFS were wrong.

To this day, he cannot get his head around it that he was trying to interpret the information to fit an erroneous pre-conceived stereotype, and that I had given him everything necessary to make the CFS diagnosis, if he had known how CFS is diagnosed. He won’t even address the ridiculousness of his assertion that my symptoms were caused by the divorce, which flies in the face of the prior medical records showing that I had the same symptoms while married, and my statement that I already had symptoms before getting married. He can’t admit to any possibility he might be the one who’s mistaken, so he has to claim that I, and the specialists, and the psychologists, and the eyewitnesses, are all wrong in our observations and only he is correct.

The onlyreason he could accept for my saying that anti-depressants didn’t help me was "you don’t want to get better and have to go back to work". It simply didn’t compute that anti-depressants don’t help because I don’t have depression; I have a virus. A virus which was diagnosed by a virologist who knew what a post-viral syndrome should look like and called me "a textbook case".

Too many patients have found that as soon as they say "tired all the time", the doctor shuts down and immediately thinks "depression", even if the rest of the symptoms don’t match up. And there are many symptoms of CFS that don’t match up to a depression diagnosis. But that’s the way the doctor chooses to interpret the symptoms, and if you include symptoms that are not commonly associated with depression, he interprets those as "patient is confused" or "patient is too stupid to know what her symptoms are" rather than "doctor is looking at wrong diagnosis".

Even when given the diagnostic criteria, some doctors choose to interpret them in their own way: some doctors believe that if you can walk, you can’t have CFS. They won’t make the CFS diagnosis unless your husband carries you into the office. Which means that those who don’t have a husband, or whose husband is not physically able to carry you, would never get a CFS diagnosis from one of those doctors. The diagnostic criteria don’t say anything about "can’t walk" or "24 hours a day in bed" – those are things that some doctors erroneously interpret into them. The diagnostic criteria call for 50% reduction in prior level of activity, which means that someone like me, who previously was active 16-18 hours a day, could meet that criteria even while being able to work full-time ... but with the 50% reduction, that 8 hours of activity is all that the patient is able to do, and then must come home and collapse into bed in order to be able to work the next day. I lived that way for quite a while ... yet there are still doctors who don’t believe that I desperately want to work and have never had any intention of quitting my job to be supported by either a husband or the government.

The facts that I worked against the odds for years don’t square with their interpretation that women don’t want to work, so they discount the fact that for years I struggled to work full-time until it became totally impossible, and go with the interpretation they prefer, that I don’t want to work and want SSDI because it’s just a little inconvenient or a little painful for me to work. "You could work if you wanted to"; no, I want to, but my employer said I can’t work. "You could work if you tried harder"; how much harder can you try when just getting to the office leaves you on the verge of collapse? I was there, I was not calling in sick, but I wasn’t accomplishing much, because I was too sick to work. My boss and everyone else in the office saw for themselves that I was trying; the doctor, who wasn’t there, thinks he knows better than any of the eyewitnesses what was going on.

Similarly, many male doctors automatically assume that women are prone to hypochondria. Objective symptoms, such as fever, fainting, vomiting, diarrhea, loss of motor control, are obvious signs that something is physically wrong. Reports of those symptoms are discounted, as the doctor interprets the patient’s conclusion "in short, I just plain don’t feel well" as hypochondria without taking into account that she has described a number of specific symptoms. The first doctor I saw in 1987 convinced my husband that he was not seeing what he thought he was seeing; I didn’t really have any of those objective symptoms that my husband had seen for himself. The doctor said they weren’t there, therefore, not only was I imagining them, but my husband was also imagining them; disbelieve your own eyes and believe only what the doctor tells you.

Dr. Carol Jessop, one of the pioneers in CFS, sent a number of desperately-ill female patients to a male virologist. He returned all of them with an unwarranted psychiatric diagnosis. Finally, Dr. Jessop sent him a male patient, who was nowhere near as sick as the women; he was returned with the diagnosis that it was obviously a viral ailment, but one that there was no test for. To this day, we find the same thing – men’s symptoms are taken more seriously. Women are sent away with misdiagnoses of depression, hypochondria or menopause, while men are typically given a more in-depth work-up.

My boss, who had similar symptoms, but nowhere near as severe as mine, was flown to the far end of the state for additional testing; no one ever suggested to him what was suggested to me, that he go home and tell his spouse "I don’t want to work any more, you have to let me quit my job." He was eventually diagnosed with something else, but he stayed on my case that I could not accept a diagnosis of "nothing" when it was so obvious to him and everyone else in the office that there was something very wrong.

He couldn’t believe that the doctor couldn’t see what he was seeing, but the simple fact was, the doctor didn’t want to see it ... he wanted to see a scheming manipulative *itch who wanted to quit her job, and that’s what he saw, even when the evidence showed that the woman was struggling mightily to keep her job and panic-stricken at the thought of losing it.

You’ll find this in all facets of life: people see and hear what they want to see and hear. In response to one post, I got two very different responses: a woman caring for a terminally-ill patient marvelled "how can you stay so damn chipper dealing with what you deal with?", and a woman who’s always looking for sympathy for her minor inconveniences interpreted the very same post as me begging for sympathy and cash donations! She knew that in my situation, she’d be whining and begging for someone to help her, therefore, she could not comprehend that I was simply reporting in an unemotional journalistic fashion on the reality of my challenges.

But, it’s more troublesome when it’s doctors who "interpret", because their false interpretations can cost someone their job, their eligibility for disability benefits, or even their life. How many CFS patients, feeling disbelieved by their doctors, have resorted to suicide because they weren’t getting the help they needed and were constantly being told "you’re just faking/lazy/crazy"? And, in many cases, the doctor’s attitude affects their family’s attitude: if the doctor says you’re faking/lazy/crazy, then the doctor must be right.

Fortunately, my boss was not as awed by doctors as my husband, and my boss kept after me until I got a diagnosis. The doctor was not going to convince my boss that he didn’t see what he thought he saw, because my boss had the courage of his convictions. And once I had the diagnosis from a specialist who was researching the viral component of CFS, I had what I needed to lean on when any other future doctor tried to tell me there was a purely psychological explanation for my problems.

If your doctor seems to be interpreting your statements to fit what he wants to hear, don’t try to change his mind; it won’t work. Change doctors instead. Many of our patients have found that a female doctor is more likely to listen to them and interpret accurately, rather than attributing all their problems to lazy, crazy or menopausal. You may actually get more help from a female generalist with an open mind than you would from a male rheumatologist whose mind is already made up about what CFS is.