“The child asks to stay home from school frequently; I suspect malingering.”
When I read that sentence in an online group for therapists, my blood boiled. Malinger means to “exaggerate or feign illness in order to escape duty or work,” according to the first hit from the Google search on my smartphone. As a therapist, my reaction stems from my belief that it’s my job to stay curious and not rush to judgment about clients. It also bothered me because people have said similar things about me.
You are allowed to fire your doctor
I have Ehlers-Danlos syndrome (EDS), a genetic connective tissue disorder that I’ve had since birth. But I was undiagnosed for the first half of my life and then misdiagnosed for most of the second half of it, because no one believed me about my own experience. When I brought this to my father’s attention recently, he just said, “we thought you were making it up.” We could debate the appropriateness of this attitude in a parent, but there is no question that it was unethical on the part of the doctors who clearly thought that same thing about me. The first doctor I asked for help with applying for disability, the one who misdiagnosed me with fibromyalgia, told me, “I am not going to help you try to get out of working.” After that I never tried again. I didn’t know I had the right to change doctors; I kept seeing him for almost six years. I wish someone had told me I could fire him. I never got to read what he wrote in my medical record, and now I am not sure that I should. I probably don’t want to.
A troubling trend
Lucy*, a medical coding auditor who lives with chronic pain, agrees with me. “This very thing gets to me on a daily basis,” she said. “Sometimes I feel that [providers] document their inner opinions and forget their audience and permanence of the medical record. I do get that there are difficult situations that are necessary to note, but some are just troubling.” Lucy also believes that many therapists need to do better when it comes to listening to their clients and understanding what they go through medically. “There is a huge need for mental health professionals that understand the complexity of these conditions.” Lucy told me she’d gone to a therapist who “claimed to have experience with chronic pain patients…but she clearly did not understand.” While I wish she’d had a better experience, I’m glad Lucy knew that she deserved someone who would listen to her and that she could fire her therapist.
A collection of judgment and prejudice
In The “M” Word: Accusations of Malingering are Harmful to Patient Care, Joshua Ellis said, “the seed of doubt grows into a small tree of criticism which blooms into a collection of judgment and prejudice that prevent the patient from receiving the care that he or she deserves. All of this can happen after a patient is accused of malingering.” This can look like Gina being told by her doctor to “just take some Tylenol,” when she has undiagnosed endometriosis. It can look like Brian, who has hypermobility in his knees, which causes him to frequently collapse when going up and down stairs, receiving instructions from his physical therapist to “run more on the treadmill to build up those muscles, and be sure to stretch after”—when he should be reducing impact on his knees and learning to control his range rather than increasing it—because “he must be making it up.” It can look like Heather, a single mother who holds it together in public for her children being denied mental health care because “patient seems fine—likely a drug-seeker,” even though she spends her nights anxious and crying, terrified that she won’t be able to cope much longer.
These people, and too many others like them, have a hard-enough time already without so-called “helping professionals” making things worse. You always hear stories about somebody who knows somebody who’s taking advantage of the system, who’s committing fraud, who’s just looking for drugs or a handout. As a therapist, I have never met one of those somebodies. I only see people who are far too hard on themselves, who usually won’t accept the help they need because their greatest fear is being “a burden,” so they rarely mention their pain. It’s time for health-care professionals to start paying attention and believing their patients. It’s time for malinger to get the hell out.
*Names have been changed for privacy.
Christy Olson, MSW, LICSW, is a therapist who specializes in supporting clients who live with chronic illness and chronic pain. She likes musicals, thunderstorms, and cheesecake, and she really hates the word malinger. She also hopes you’ll enjoy having The Cranberries stuck in your head for the foreseeable future as a result of reading this blog post. Learn how to become a client by clicking here.