A new syndrome is on the rise, and I call it healthcare PTSD (post-traumatic stress disorder). I’m seeing more and more examples of it among my new patients and it’s got me worried. Why? Patients are coming to me with symptoms of depression/anxiety and/or obsessive thinking triggered by having entered the health care system. Our US health care system, allegedly the finest in the world.
It’s best if I relate a typical case.
Judy, a smart women in her late 20s with a fine new job and solid relationship, had always had digestive problems. Unpredictable diarrhea or constipation, bloating, heartburn, some food intolerances. In college she’d been told it was irritable bowel syndrome (IBS), but Judy was never happy with that diagnosis, even though she’d had the same symptoms for years. Armed with new employee health insurance, she wanted more information about what was going on in her belly. So she signed up with one of the best known medical centers in Chicago and waited for her appointment.
When she arrived, she told me, the place felt like a factory. A clearly rushed doctor (whom she would never see again) says he’s her “primary,” listens for a few minutes, and then tells Judy he needs to rule out ulcerative colitis, Crohn’s disease, and, although it’s rare, cancer, and refers her to a gastroenterologist. When Judy mentions she has occasional tingling in her hands, he looks worried and says “we should also rule out multiple sclerosis (MS). Let’s get a thorough neuro evaluation as well.”
Judy thinks about the possibility of cancer or MS constantly, but a few weeks later the gastroenterologist she sees is dismissive. “It’s just irritable bowel. Calm down. Your primary wants me to rule out cancer, which I guarantee you don’t have, but we’ll schedule a colonoscopy anyway. Heartburn? Let’s do a gastroscopy while you’re in there.”
Remember that each appointment requires scheduling time off work, parking fees, nervous time in the waiting room, still more nervous time wondering if the doctor will listen, and wondering how tests will turn out.
Judy follows all the instructions for her tests. She schedules more time off work to actually have them, and her boss gives her the evil eye when she finds out about yet another doctor appointment. Judy feels a vaguely tight sensation in her chest and now has near-constant headaches and aching muscles. After the procedures (results: completely normal), she tells the gastroenterologist about these new symptoms.
“Not my area,” he says. “But let’s check out that heart. Since you’re getting the neuro eval for your tingling, she can look into this headache of yours. We’ll add a cardiology consult, and rheumatology too to make sure the muscle pains aren’t something autoimmune.”
At this point, Judy tells me, she’s spending her nights on the internet reading about every symptom she’s feeling and what it could mean.
After five months, Judy had seen her primary care physician just once (when she returned for a follow-up, he’d left and she was assigned to someone new), a gastroenterologist, neurologist, cardiologist, and rheumatologist. She’d undergone many blood tests–often the same tests repeatedly–a gastroscopy, colonoscopy, electrocardiogram, stress test, pulmonary function test, sleep study, and MRI of her brain. She’d had a total of 10 visits, averaging three hours each or more, and as a result her job was now in danger. She worried what would happen if she were fired and lost her insurance.
All Judy’s blood tests, x rays, and procedures were negative, except for one, a screening test for the autoimmune disorder lupus erythematosus (though she didn’t have a single symptom of this condition), and even this was ruled out when the confirmatory test came back negative. Nevertheless, the young doctor in the rheumatology department said, “Since it’s the only positive test we’ve got, we’ll start you on this med for lupus and see how it goes.”
Judy read the side effects of the drug online, read about lupus, plunged into major stress, and started sleeping poorly and losing weight. Everything in her life seemed to be crashing around her and all she could think about was whether or not she had some fatal illness that the doctors couldn’t diagnose or weren’t telling her about.
The stress of Judy’s encounter with the health care system had produced symptoms of post traumatic stress disorder (PTSD). And it’s not uncommon. Believe me, this health tip is based on actual patients and their experiences.
Helping Judy get her life back on track was straightforward. Once we’d gone over all the lab tests again (it’s not uncommon for patients to drag a wheeled suitcase filled with lab reports into the exam room) and reconfirmed that everything was negative, we tried to convey these facts:
• Messages from your body Most symptoms, especially longstanding ones that don’t change much, are not signs of disease. They’re the result of you being aware of minor, temporary glitches or dysfunctions in your body that actually are trying to communicate a message to you. In other words, most headaches aren’t brain tumors–they’re tense muscles in your neck. Diarrhea/constipation/bloating usually comes from stress. And so forth. Doctors call these “functional symptoms.” I call them messages from your body asking for change.
• Doctors are trained to look for disease rather than think much about functional symptoms. To ferret out disease, they order tests (parenthetically, the cash-cow of the health care system). Functional symptoms–because they aren’t disease–never give positive test results.
• If a doctor in one specialty can’t generate any positive test results, instead of telling you, like the villagers down the road from Dracula’s castle, “Get out of here before it’s too late!” she’ll generally check your list of symptoms outside her specialty and refer you to another specialist who has his own catalogue of tests and procedures waiting for you.
• All this would make any average person a nervous wreck. And because functional symptoms are exacerbated by stress, things seem to get worse and you become more even more convinced you have something.
• The risk of positive tests If along the way, any of your tests comes back even minimally positive, unconsciously the doctor is delighted because he feels he’s made a diagnosis. And once there’s a name for your alleged condition, he can write you a… prescription.
• But you won’t improve because the prescription is inappropriate. You have functional symptoms, remember? Not a disease. And taking the drug will likely make you feel worse from the side effects.
I can hear you asking now: don’t these investigations ever turn up actual disease, Dr E? Yes, occasionally they do, but in a tiny minority of people who move through the system.
When patients who’ve been through these healthcare wars come to see us, we emphasize first that no more testing is necessary (for many patients there’s not a lot left to test) and that serious illness has long been thoroughly ruled out. We underscore the necessity of stress reduction, often including short-term counseling, and getting the body functioning smoothly again using gentle therapies like healthful nutrition, movement, supplements and herbs to replace prescription drugs, acupuncture, chiropractic, homeopathy, and the like.
About 80% of patients who come to us with Healthcare PTSD see the light during their first visit, realizing that more than anything else they’ve been suffering from a very severe case of–and you’ll pardon my medical slang here–the heebie-jeebies from being sucked into the healthcare system.
The remaining 20% have been so battered by the system they’ve become obsessive. They’ll end their visit with, “That sounds OK, doc, but just to make sure, I’ve arranged for more tests at University of Chicago (or Northwestern or Mayo Clinic). If they’re negative, I’ll think about coming back.”
We always wish them luck and keep our fingers crossed. Nothing puts a damper on life like being a card-carrying member of the Worried Well.