Monday, September 19, 2011

What's In A Diagnosis

One of my favorite courses in grad school covered the DSM-IV, the manual that psychiatrists and therapists use to diagnose patients. We learned to diagnose an imaginary patient by ticking off a list of symptoms, their severity, and their duration. I loved how sure-footed the process seemed. If patient has symptoms A and B for duration C, then you diagnose D, and you prescribe medication E. I quickly assumed that a diagnosis is central to providing care. 

But one day, our professor smashed that assumption. He told us that a diagnosis is at worst a shot in the dark, at best an educated guess, based solely on symptoms the clinician can see and the patient can report. He explained that there are very few "textbook cases" of mental illness in real life. He pointed out that labels like "PTSD" and "bipolar" often obscure more than they reveal about a person. He reminded us that science still knows very little about mental illness. He even speculated that we might someday discover that the categories in the DSM are all wrong, an absolute fiction.

How powerful to hear this from someone who had actually edited parts of the DSM-IV, and trained psychiatrists how to use it! My prof had respect for clinical diagnosis, but he also had respect for its limitations - because he had respect for his patients. His humility has inspired my own work with clients. I don't even refer to a client's diagnosis unless he or she mentions it. I am more interested in their lived experiences.

Now wait. Haven't I  proudly claimed my diagnosis of depression - on this very blog? Well, yes. But attitude is everything. I use my diagnosis not as self-definition, but simply as shorthand for, "having some challenges with mood  due to a complex interaction of factors." Obviously, one word is better than 12. So diagnostic labels do have their place. They offer a common language for describing problems, and they can give care providers direction in planning treatment.  

But it is important not to let a diagnosis become an identity. Many people feel their self-concept shaken by a new diagnosis of mental illness. Sometimes, this shakedown ends positively. A diagnosis can help someone make sense of the past. It can relieve them of guilt and shame, and put private experiences into a larger context.

Some people are relieved to learn that they have been experiencing symptoms, rather than character failings. It was a revelation when I learned that my endless striving to "discipline" myself out of my depression was actually a symptom of depression. It put an end to my fruitless battles with myself, and opened me up to getting professional help.

On the other hand, a diagnosis can be a source of guilt and shame. It may represent a personal failure to control one's life. It may make a person feel doomed and hopeless. It may lead to actual discrimination and rejection by others. I had all of these experiences, too. So I really think diagnosis is a mixed bag for most folks.

This year, I got a new chance to wrestle with what diagnosis means to me. My 5-year-old was diagnosed with developmental dyspraxia. That's a fancy way of saying that her brain has trouble communicating with her body, so things like balance, coordination, and writing are very difficult. Her senses also get easily flooded, so she tunes out when faced with a large, noisy classroom.

My daughter's disability is significant enough that she needs accommodations at school, and she sees two therapists. With this help, she is thriving in kindergarten. I'll be forever grateful that we followed our hunch about her increasingly troubling behavior, and didn't just label her "spoiled" or "rebellious." Turns out she had been doing a phenomenal job of compensating, for years. She taught herself to read to she could pursue interests that involved her mind, not her body. She learned to negotiate fiercely when asked to do something she couldn't. She charmed adults because she was afraid to play with kids her age.  

But a small child can't carry those burdens without getting exhausted, temperamental, and anxious. It was time to get professional help. Even if that meant putting our kid through a battery of tests, and having percentiles assigned and a diagnosis given. 

I have to admit, I once thought that childhood disabilities were just the current vogue, the stuff of overweening "helicopter" parents and money-hungry shrinks. The discovery that our child had actually slipped 3 years behind in her development was a giant shock wave. Minor aftershocks came when we first heard the term "special needs" applied to her, and when we set up meetings with the district to discuss special-ed services.

But we don't regret a thing. Our home is so much happier and more peaceful now, because we know how to work with our daughter and not against her. We don't pity our daughter, and she doesn't pity herself.

In coming to better terms with her diagnosis, I have also come to better terms with mine. If I'm going to meet my daughter where she's at, then I should do the same for myself. She gets to lean on the dinner table to keep her balance, and I get to take naps to cope with stress. She can stop playing and regroup when an activity gets too hard, and I can prioritize tasks so I don't get overwhelmed.

Neither of our diagnoses really matter in daily life - we just are who we are, and we need what we need. But at the same time, my daughter shares characteristics with other kids with dyspraxia, and I share characteristics with other adults with depression. That's when it's good to have a diagnosis; you can see what is likely to work for you because it works for others with the same issues. But I think that's as far as it needs to go. My daughter is not "a dyspraxic." I am not "a depressive." We are way too fabulous for that. In fact, I think we may suffer from Fabulosity Disorder. I'm going to suggest it for the next version of the DSM.


Lisa Sniderman, LCSW received her M.S.W. from the University of Chicago in 2003 and has been a licensed clinical social worker since 2005. She is also a member of ETD's Mental Health Advisory Board. Click here to read more posts from Lisa.

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