It seems that just about every one I know who has chronic pain or a condition that’s not immediately evident to a first year med student with a copy of Grey’s Anatomy has been sent off by one doctor or another to see a psychiatrist. The last words the patient hears before being handed the referral to the MD’s shrink of choice: “It’s all in your head.”
Not literally, of course. What the doctors actually say to their patients is, “I was unable to find anything wrong.” Or “There’s no clinical evidence of disease.” Or the worst one of all, “You have a condition called somatization disorder/Briquet’s syndrome.” Whatever the words that are used, the message the patient hears is clear -- I don’t believe you. You’re making it all up. You’re crazy.
Until you -- or your mother, son, husband -- have heard these words firsthand, you can’t possibly understand how devastating they are.
I was thirteen the first time a doctor told me that my physical problems were psychosomatic. During a weekend trip to Toronto the year before, I developed a stiff neck that was so that I was unable to turn my head at all, and so painful that I had to sleep sitting up. At first, my Mom thought it was the result of tramping around the city during a late season blizzard, and that it would resolve itself with the aid of time and a good heating pad. But when I was no better after three weeks, she took me to see an orthopedic surgeon. Dr. Ortho prescribed muscle relaxers and over-the-door traction but was unable to find the reason my neck muscles were so tight. (He did, however, diagnose me with both scoliosis and hemihypertrophy, the latter probably being the cause of the former.)
After about six weeks of treatment, the stiff neck resolved itself. But as soon as it did, it was replaced with a new set of problems: malaise, nausea/loss of appetite, and vomiting that resulted in dangerously rapid weight loss (30 percent of my body weight in less than three months). Close to a dozen consultations with my pediatrician, internists, neurologists, neurosurgeons, and a gastroenterologist turned up nothing that would explain why I was throwing up every day, couldn’t eat, and had barely enough energy to drag myself to junior high every day. The last doctor we saw told my parents in no uncertain terms that he believed my problems were mental, not physical, and recommended that they take me to a psychiatrist.
I wasn’t in the room when the doctor gave my parents his assessment, but that didn’t make it any less painful. Being sent to a psychiatrist meant the doctors thought I was crazy or a liar (or both). It meant that no one believed me (except my Mom, who never wavered from her insistence that there was a physical cause for my misery). It meant that my Mom and I were now on our own.
Even though I wasn’t trying to lose weight, the psychiatrist, who I’ll call Dr. Ahab, diagnosed me with anorexia nervosa. He put me on a high dose of Mellaril (a drug used to treat schizophrenia, a severe loss of contact with reality), and subjected me to weekly discussions about why I feared growing up and becoming a woman (I didn’t). I was so physically sick that I was hospitalized for dehydration four different times. At one point, Dr. Ahab tried unsuccessfully to convince my parents that the combination of outpatient therapy and antipsychotic medication was no longer enough, so I should be admitted to an inpatient psych hospital for children as soon as I was medically stable.
The message was hammered home: your body may be sick, but the problem is all in your head. Inpatient treatment meant the doctor didn’t just think I was making things up, he thought I was crazy with a capital C.
That was one of the lowest points in my life. Word got out at my school that I had been sent to a shrink and almost “put away” because I was faking my illness. I was relentlessly bullied by some of my classmates, and singled out and embarrassed by my PE teacher. And although my body temporarily healed itself during that time, my spirit became progressively more wounded. A year and a half later, Dr. Ahab finally decided I was ready to be released from his treatment. But by that time, the damage was done.
I enjoyed six trouble-free, psychiatrist-free months before I lost the use of my hands. At first, I noticed that it was getting harder to play my viola because I couldn’t keep my fingers in the right place on the fingerboard or hold the bow correctly. Within a month, both hands were curled into fists and I was using my wrists to open doors and lift food and beverages to my mouth (I ate a lot of hot dogs). And sure enough, when I showed my parents how bad things had gotten, my Dad whisked me straight away to a new psychiatrist, who handed me a pencil and paper and told me to draw the objects she’d posted on her wall.
My first thought was, “I’m so screwed.“ I couldn’t extend my fingers from where they curled into my palms, and my hands were so weak I had no grip. Even if I did manage to hold the pencil tight enough to draw, the lack of control I had over my hands was sure to produce shapes that would make it appear as though I had no grasp on reality. I was sure before I started that this was game over, and I’d be heading straight to the psych hospital after this appointment.
Thank goodness this wasn’t Dr. Ahab, or even someone who shared his mindset. This new psychiatrist recognized that there really was something physically wrong, and referred me to a new neurologist (number six, if anyone‘s counting). After two more months of doctors and diagnostic tests (including an electromyogram and myelogram), I was diagnosed with an astrocytoma, grade III (anaplastic astrocytoma) , of the cervical and upper thoracic spinal cord, my Mom and I were finally able to prove that all of problems were physical, not psychiatric, in nature. As strange as it sounds, hearing that I had cancer was, for a brief moment in time, a huge relief because it was real.
This experience changed how I thought about doctors. Primary care physicians and specialists are viewed with suspicion. I no longer believed that they will listen to or really understand what I told them, or that they would make every effort possible to figure out what was wrong with me. Psychiatrists and other mental health professionals are adversaries who are not to be trusted.
I wish I could tell you that my experiences in the 30 plus years that have passed since then have convinced me otherwise. I wish I could tell you that I was the only one who’s experienced this. And I really wish I could tell you that I believed no one would ever tell me again that something I know to be real isn’t.
I may sound cynical, but I believe that's probably typical of anyone who's been repeatedly told he/she's crazy. But based on my experiences, the best I can hope for is to have what I do right now -- something that I didn’t have when this first happened: other people who been there and done that, and who understand why I get so angry when a doctor even suggests that my pain, or anything else I’m experiencing, is all in my head.