You expect pain after surgery. Nausea with chemotherapy. Weight gain when taking certain medications. But few people see it coming when depression creeps in as a side effect of major illness or its treatment.
"I was crying all the time. All I wanted to do was sleep to escape from it," recalls Sandra Knightley of Lake Wales, who was about seven months into a year of chemotherapy treatment for breast cancer when depression descended and wouldn't lift. It took months to convince her oncologist that she was depressed and get a referral for a psychological evaluation and counseling.
"Cancer doctors sometimes get too focused on treating the cancer and don't pay attention to your mental health," said Knightley, 68, who is retired from working in a golf pro shop. "It must be stable and balanced so you can deal with the cancer."
What Knightley was going through wasn't unique. Developing depression during the course of a chronic or sudden illness is more common than many realize.
A 2011 Robert Wood Johnson Foundation report found that 34 million American adults, 17 percent of the adult population, had a mental health disorder such as anxiety or depression along with a chronic health condition such as diabetes, heart disease, back pain or asthma.
According to the National Cancer Institute, one-fourth of all cancer patients develop depression. The American Heart Association says that up to 33 percent of heart attack patients develop depression, noting that it can happen even without a major event.
"We see it every single day," said Dr. Nick Dewan, a psychiatrist and medical director for behavioral health for BayCare Health System. "Specialists like me see about a quarter of all cases, the ones that are more severe. Most of the rest are handled by primary care docs. It's so common to see depression in the face of illness that BayCare now has social workers in primary care offices to create better access to mental health care."
The more advanced or complex a person's illness, the more likely they are to become depressed. A family history or personal history of depression increases risk. Certain medications, including corticosteroids, Interferon and Interleukin-2, can contribute to depression while battling a health crisis. So can poor sleep, pain that isn't well controlled and worries about family, finances and employment.
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Michele Tomas, a pancreatic cancer patient at Moffitt Cancer Center in Tampa, developed depression soon after learning of her diagnosis in July 2014. Her oncologist put her on an antidepressant in November, hoping to keep it from worsening. But it did and she didn't tell her doctors.
"I thought, this is normal, how you should feel and I just had to put up with it," said Tomas, who is 45 and lives in Tampa with her husband and their two teenage children.
Then, about two months ago, she had to skip a day of chemotherapy because certain blood levels had dropped. "It really hit me then. That crushed me," Tomas said tearfully. "I thought, 'If I don't have my chemo, how am I supposed to fight this cancer?' "
Tomas, a former nurse who describes herself as an upbeat, positive person who often gave her patients pep talks, said she went to a "very dark place" when that happened. "I didn't want to talk to anyone or socialize. There were days I wouldn't get out of bed until five o'clock in the afternoon." She mentioned it to her pain management physician, who immediately referred Tomas for treatment.
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Some people don't want to admit to depression because it might derail treatment for the primary health problem, possibly putting it off a few days or weeks until the depression issue is figured out. While that may be frustrating, it's an important step.
"Depression can affect recovery and your ability to fight illness," said Dr. Glenn Currier, a psychiatrist and chairman of the Department of Psychiatry at the USF Health Morsani College of Medicine. He said it can cause cellular and hormonal changes that might put overall health at risk, so patients shouldn't delay getting help.
"The later it is addressed and the more intense the depression, the more difficult it is to treat," Currier said.
Some people, because of stigma, won't say they are depressed. Or they don't recognize mood or behavior changes as depression. As Knightley discovered, even some doctors fail to pick up on it. How do you initiate the conversation?
"I ask outright, 'Are you feeling hopeless?' " said Kristine Donovan, a clinical psychologist in the department of Supportive Care Medicine at Moffitt and one of the clinicians helping Tomas and Knightley.
"For most of these patients we are talking about depression with a little 'd,' not a major depressive disorder. It's a normal reaction to your diagnosis and the experience you're going through. That's why clinicians should ask, 'Are you depressed? Do you feel hopeless?' That can tell us if intervention is needed."
Knightley and Tomas both benefited from antidepressant medication and counseling sessions with Donovan.
"Everyone asks me, 'What would you do differently?' And I say, 'Get help right away,' " Knightley said. "Get antidepressants and a counselor right away so you have somebody to talk to and be honest with and be understood."
"Of course my family is always there, but there are things I can't say to them for fear of upsetting them," she said. "I can tell (Donovan) exactly how I feel, 100 percent honestly, and I don't have to worry about making her sad, worried or hurting her feelings."
Contact Irene Maher at firstname.lastname@example.org.