In Which Normal Becomes a Mental Illness

The upcoming fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-V) lists the new disorder called Somatic Symptom Disorder. To quote my HealthCentral post from yesterday, "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."
When I first read this definition, my jaw hit the floor for several minutes. Then I sputtered incoherently for several more. It could be argued that I am still sputtering. There is a significant amount of concerns about this new disorder within the community of people living with chronic illnesses, as well as medical professionals and therapists (see more detail here). Today is not about those concerns exactly. Today is about something a little different.

You've no doubt heard about the concept of catastrophizing. Last summer, I wrote about this topic in a response to an RA Warrior post, so forgive me for quoting myself again. Catastrophizing is a concept discussed in rheumatology literature (and no doubt practice) stating that " people who have RA pain tend to exaggerate reports and worries about pain and its impact, leading to poor coping styles and depression."

There's a lot wrong with that concept. It minimizes the reports of people who live inside RA, of their pain, their concerns and their reality. Slapping the label of catastrophizing on a person dismisses their assessment of their reality. It invalidates their experience. In my opinion, doctors and researchers should try to imagine what it is like to wake up with a level 7 pain (on the infamous 1-10 pain scale) or more every day. Or, choosing a different condition such as IBS, what it is like to always need to be close to the washroom. Or if you have lupus, not being able to go out in the sun. Or if you have cancer having to be on chemotherapy. Etc. Is anyone likely to shrug off such experiences? Might it be reasonable to assume that this would cause some level of distress, anxiety or depression? Might it be equally reasonable to imagine that such a chronic illness could consume a significant part of your time and energy?

Eight years ago, I was in a fight for my life, buried in a severe, long-term flare. RA was consuming everything I did and everything I was. The world had shrunk to a place of screaming pain, my body becoming a place of torture. Every day, I got weaker. Every day, I lost another tiny bit of ability. I felt like I was losing my life, both metaphorically and literally. It was as if my body was slowly shutting down.

Some might call that catastrophizing. And now, thanks to the APA, someone in that situation who expresses those kinds of feelings could be diagnosed with a mental illness. There is a direct link between the two: both are an able bodied, healthy person judging a situation about which they have no comprehension. This is the ultimate arrogance of the healthy, flavored with a refusal to accept that it can possibly be "that bad." For those with little imagination, chronic illness and its consequences cannot be understood. They assess worry and anxiety about life with such a condition as "excessive" and "disproportionate." Excessive to what? Disproportionate to what? To a normal existence in good health? Certainly. To having your life consumed? Maybe not so much.

There are many good doctors and good therapists out there, people who trust the words of their patients. People who take the mental leap between a state of health and what it must be like to not have health. People who support the growing push back from those who live with a variety of chronic illnesses and conditions to be empowered and engaged and control of their care.

And then there are those who don't. Instead of listening to people who live with medical conditions and accepting their stories about what it’s like to have a chronic illness, the APA has now pathologized legitimate worry and anxiety.

The APA has rejected Dr. Frances’proposal for a change of the definition for Somatic Symptom Disorder. I firmly believe that they might change their minds if more pressure was brought to bear. Encourage your local media to cover this, e-mail your elected representative and please sign the online petition. Together, we can make our voices heard.


Colleen said…
There could be, and maybe ought to be, a name for the side effect of chronic illness, when it affects your mental outlook, when you must (keyword, must) think about and plan for your illness, to manage it, just to be able to function in our daily life.

What is a good name for that?

I couldn't go yo a class last week, as the handicapped sign was down, and a car parked in that space, parking lot unplowed, no yak tracks available, so I couldn't walk across theparkinglot,
Colleen said…
And the lot is on a hill, such that I can't get in and out of my car, andi couldn't get at my step stool....
Unknown said…
Excellent article, Lene! I am sending this to my DH, who happens to work for a radio station that often interviews legislators in Jefferson city. Thanks you for bringing attention to this craziness.
FibroFacialGal said…
Yep, I wrote about this too. I love how you discuss the arrogance of the healthy, not something many ;people think of.

Great stuff.
Cindy said…
A few years ago, I was having my annual and my GP (male) was doing my pap test. He apologized and said how he knew how it felt. I asked his receptionist when she thought he had had his last pap smear. She just about burst a gut and he had the good grace to realize that what he said was stupid.

I don't think you need to experience everything to be able to make reasonable decisions (non parents can be great teachers, etc) but you should not label a population as suffering from a mental illness if you don't have a clue what they go through on a day to day basis to function.
Amy said…
Hi Lene - I shared this with some friends who have some personal experience with this topic and this was what I was told - I will quote: "The DSM is written as a method for billing insurance. Doctors can use the code associated with a DSM diagnosis to bill. If there is no DSM definition, then it isnt covered by insurance. Sucks, yes, but it is what it is. I know people who have been involved in the revision process. They work with patients who need psychological support, in this case to deal with a medical condition, but it isnt covered by their insurance since by definition they are mentally healthy so they cannot continue care/support unless they pay for it out of pocket. After seeing the hardship this places on patients, they added this."
AlisonH said…
Reading what Amy said, my rebuttal to them would be, some things are not worth saving the money over. I had a rheumy originally who refused to put my lupus diagnosis in my records, saying I would never again be able to get insurance if he did. But since he didn't write that I had lupus, only told me verbally, other doctors questioned me when I said that he said that I did. (This was all many years ago.) The upshot was so many problems caused that if it had been the matter of paying for one or two doctors' visits out of pocket, I would have done it in a heartbeat. A dozen years after that guy told me that, I STILL had a neurologist who scoffed that it was all in my head--ten days' hospitalization and near-death experiences notwithstanding.

The best part, though, was another specialist who has Crohn's disease himself and who was put through the all-in-your-head garbage as a teen. I caught him actually rolling his eyes at one of the other doctors, and it was a highlight of my life as a patient. He knew!

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