People with Chronic Illnesses Could Be Labeled as Mentally Ill

  • Did it take a long time for you to get diagnosed with rheumatoid arthritis or another chronic illness? Did your symptoms disrupt your daily life? Did you worry about your symptoms? Is your condition under control or does it disrupt your daily life? If so, do you worry about it?


    According to the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-V) to be published in May, this could cause you to be diagnosed with a mental disorder.


    The DSM-V is published by the American Psychiatric Association (APA) and is used to categorize mental disorders. It contains the diagnostic codes and criteria that psychiatrists, therapists and other medical professionals use when diagnosing mental illness.

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    A new disorder called Somatic Symptom Disorder (SSD) has been added to fifth edition (draft pdf here). According to the definition, you can be diagnosed with SSD if for at least six months, you have had a symptom or symptoms that is distressing and/or disrupt your daily life and you have one of the following reactions


    • Disproportionate thoughts about the seriousness of your symptom(s);
    • A high level of anxiety about your symptoms or health; or
    • Devote excessive time and energy to your symptoms or health concerns.


    This could describe anyone who has struggled to get a diagnosis for e.g., an autoimmune disease, notorious for being hard to pin down. It could describe anyone with uncontrolled RA, lupus, MS, IBS, or fibromyalgia who are worried about their condition — and who wouldn't be with an uncontrolled illness? In that situation, what constitutes "excessive time and energy" and who decides what's excessive? When a medical condition has taken over, your life becomes about trying to control and manage that condition. It can be a full-time job.


    There are a number of concerns related to this new disorder. One of the primary concerns is that the definition is too vague — as illustrated above, it could theoretically be applied to most anyone who lives with a chronic or serious illness. SSD also labels a normal emotional response to a difficult health condition as mental illness. If a symptom or your condition disrupts your life or is distressing, it is a normal human process to be anxious about it, even very anxious. An uncontrolled, long-term RA flare can consume your life and require all your time and energy to manage. Do all doctors understand that? Do all doctors agree with your assessment of the impact your disease has on your life? Should they get to decide or should you?


    A diagnosis of SSD has potentially serious consequences to someone's future. This kind of diagnosis shifts the focus from the physical condition to an alleged mental illness. Once you have been labeled as mentally ill due to your reaction to your illness, getting medical professionals to take your concerns seriously could be close to impossible. This could have serious implications in terms of people being left untreated for real health problems. As well, it could also mean people being unnecessarily prescribed psychiatric medication.


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    Alarmingly to those of us who have a background in science, there is no support from research data that could validate the credibility of the new disorder. Medicine is evidence-based. By including SSD in the DSM-V without supporting evidence, the APA is putting the cart before the horse.


    What You Can Do

    It's important that we not adopt a "us versus them" approach when trying to change the APA decision. Many medical professionals, psychiatrists and therapists have been very vocal about their opposition to the inclusion of SSD in the DSM-V.


    We need to create awareness about this issue by getting media, insurance companies and our elected representatives involved. The more media report on the absurdity of this new definition, the better. Dr. Allen Frances, the chair of the DSM-IV task force, has written an excellent article outlining the concerns with this new definition — reading that article and leaving a comment will help add weight. As Karen Lee Richards pointed out on our Chronic Pain site, the more page views and comments he has, the greater the chance of him persuading the APA to make a last-minute change. You can also send an e-mail to your elected representatives expressing your concerns


    As well, an online petition has been created, requesting that the APA clarify the criteria for SSD. Please consider signing it and sharing it in your networks.


    Update: Unfortunately, the APA has decided to not change the definition of SSD, based on Dr. Frances' proposal. I don't believe this as to be the end. The more we contact our elected representatives through e-mail and the online petition, encourage insurance companies to oppose SSP (can you imagine how much it will cost them?) and encourage the media to cover this story, the more pressure will be brought to bear on the APA. This isn't over. Please write your representative in Congress, your newspaper or television news station and your insurance company.


    Lene is the author of the award-winning blog The Seated View.

Published On: January 22, 2013