Physical ailments may be dismissed once you're treated for mental illness
This is the third in a six-part series that explores challenges people face when they seek treatment for mental health issues. The final two articles in the series explore reasons for problems with care and how to help yourself and loved ones to get care that works.
When you see Danielle in action, you'd never believe that her medical records take up two drawers of a filing cabinet. A nationally ranked athlete as a young adult, two decades later she runs her own PR firm and acts as a spokesperson for several large businesses and nonprofits.
Her first prolonged dealings with the healthcare system came when she was in her mid-20s. She began having panic attacks, and her doctor prescribed anti-anxiety medicine.
A few years later, she started to have severe pain in her belly. Doctor after doctor, seeing that she had a history of anxiety, dismissed her symptoms as being all in her head. She had agonizing pain for months, and filled a number of prescriptions for painkillers.
She was finally correctly diagnosed with ulcerative colitis, meaning that her intestines were severely inflamed, which explained why she'd been in so much pain.
According to the Mayo Clinic, "Researchers no longer believe that stress is the main cause" of this condition. They also report that "It's a serious disease that, in some cases, may cause life-threatening complications."
This was Danielle's first experience with having her physical symptoms written off because she had once had treatment for a mental health issue.
Notice that when doctors wrote off her excruciating pain, they backed Danielle into a corner: She had no choice but to ask for pain medicine, creating a medical history full of prescriptions for narcotics.
Three times over the next four years, Danielle's legitimate physical symptoms were dismissed without being checked out, with the excuse that they were surely all in her head or that she was simply a drug-seeker who'd say anything to get more narcotics.
In the first situation, she was kept in the hospital for observation after a colonoscopy, and given the blood thinner heparin. She reported severe pain and passed out. Her doctor said that she couldn't possibly be experiencing that much pain.
When she refused to be given any more heparin, he said that her refusal and her complaints about side effects proved that she was mentally ill. It turned out that the heparin she was given came from a batch that contained deadly contaminants.
Being right about the heparin wasn't much comfort to Danielle. In the next year, she spent more than 150 days in the hospital, on and off, dealing with cascading damage from the poisoning. Extensive harm to her body, her family and her work drove Danielle close to the edge, and she was put back on anti-anxiety medicine.
In the second situation starting a year later, she again began to have excruciating stomach pain, on and off. She saw eight different doctors in a year and a half. They didn't run tests. Seeing her history of anxiety and prescriptions for narcotics, they said things like, "You should up the dose of your anti-anxiety medicine."
When she and her husband were visiting relatives for Christmas, she landed in the ER, where doctors responded just as the previous eight had.
However, one of the relatives they were visiting happened to be a doctor, and he got the ER to run a test to check out her liver, gallbladder, bile ducts and small intestine. Danielle commented that their attitude was, "Fine, we'll run this test just so that we can get rid of you. You're just a drug-seeker."
When the test results came back, Danielle instead was rushed into emergency gall bladder surgery. The doctor said tersely, "If we don't do it now, you could die."
It turns out that her gall bladder was mostly dead. It was heavily scarred and contained many gallstones. Bile was leaking out.
Danielle developed infections inside her belly as a result of the surgery, but her symptoms were once again dismissed until the situation became very, very dangerous.
The third situation concerned the port that Danielle had to have surgically implanted into her chest so that drugs could be injected, because her veins had become severely and permanently damaged from side effects and complications of the heparin incident. The port has to be replaced every few years, and the surgical site hurts a great deal once the anesthesia wears off.
After the most recent implant, Danielle overheard a nurse ask the doctor what prescription for pain meds he was ordering for her to take home. He replied, "I'm not giving her anything. She's a f---ing junkie!"
When her husband was permitted in to see her a little later, Danielle started crying and told him what the doctor had said. Skeptical, he asked the nurse if Danielle's report was correct. Reluctantly, the nurse confirmed that it was.
After many years, Danielle has finally found several doctors who believe her and treat her medical issues seriously. One of them said to her, "Listen, Danielle. There's no way you are dependent or tolerant," which she would be if she were addicted to pain medicine. "If you were, you'd have to be taking 10 times as much as you are currently taking" to get relief.
She has gotten so used to being judged unfairly that she expects it. Fully aware of the irony, she reports, "I have to take anti-anxiety meds to go to the doctor."
Even though each protracted episode of pain turned out to have serious - even life-threatening - physical causes, each time that she had a new problem, she once again faced suspicion because she had a history of treatment for anxiety and of prescriptions for narcotics.
Dr. Kenneth Duckworth, the medical director of NAMI (National Alliance on Mental Illness), who was not involved in Danielle's case, commented, "This is a common concern." He termed it "an awful propensity" and noted that he has "seen no evidence" that the situation is getting better.
A NAMI survey found that 49 percent of those who responded said that "doctors took their medical problems less seriously once they learned of their (mental illness) diagnosis."
Sometimes people have physical problems that are ignored because they have had treatment for mental health issues. Sometimes the reverse happens: people are treated for physical problems when the real issue is a mental health one. And sometimes people have both physical and mental health issues, but they are given treatment for only one of these.
What can you do if you find yourself in a situation like Danielle's? One step is to keep a careful record of your symptoms: date and time when you noticed a symptom, what you were doing when it started or returned, a clear description of the symptom, what drugs you are taking and when you take each dose, what makes the symptom better, what makes it worse, and so forth. Share these records with your doctor, keeping a copy for yourself.
A second step is to create a one-page (or a few pages, if necessary) health history. Use just one line for each doctor's visit. Write down the date, the doctor's name and specialty, the symptoms you reported, what the doctor concluded, and the treatment given. In Danielle's case, this list would clearly show how often a problem was presumed to be psychological or fake but was later shown to be a serious physical problem. Showing this history to doctors in the future could help them avoid assuming that physical problems are imaginary.
A third step in a case like Danielle's could be to ask a psychiatrist or pain management specialist to write a one-page letter, a copy of which could be given to doctors in the future. It could lay out the evidence to counter the assumption that the individual is drug-seeking and/or that the problems are imaginary.
Elizabeth L. Bewley is president and CEO of Pario Health Institute and the author of "Killer Cure: Why Health Care Is the Second Leading Cause of Death in America and How to Ensure That It's Not Yours." To tell Elizabeth your story or to ask her a question, write to firstname.lastname@example.org.