The Curious Psychology of “Disability” – a Rare Disease Day post.

“What’s in a name? That which we call a rose by any other name would smell as sweet.” ~William Shakespeare
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The Curious Psychology of “Disability”

I’ll start this post with a brief clinical vignette:

I have been seeing Frank, a 44 year-old man, on a regular basis for about six months.  He first came to our community clinic with generalized, nonspecific complaints of “anxiety,” feeling “uncomfortable” in public, and getting “angry all the time,” especially toward people who disagreed with him.  His complaints never truly met official criteria for a DSM-IV disorder, but he was clearly dissatisfied with much in his life and he agreed to continue attending biweekly appointments.  Frank once requested Xanax, by name, but I did not prescribe any medication; I never felt it was appropriate for his symptoms, and besides, he responded well to a combined cognitive-interpersonal approach exploring his regret over past activities as a gang member (and related incarcerations), feelings of being a poor father to his four daughters, and efforts to improve his fragile self-esteem.  Even though Frank still has not met criteria for a specific disorder (he currently holds the imprecise and imperfect label of “anxiety NOS”), he has shown significant improvement and a desire to identify and reverse some of his self-defeating behaviors.

Some of the details (including his name) have been changed to preserve Frank’s privacy.  However, I think the general story still gets across:  a man with low self-worth, guilty feelings, and self-denigration from his overidentification with past misdeeds, came to me for help.  We’ve made progress, despite a lack of medications, and the lack of a clear DSM-IV (or, most likely, DSM-5) diagnosis.  Not dramatic, not earth-shattering, but a success nonetheless.  Right?

Not so fast.

Shortly after our appointment last week, I received a request for Frank’s records from the Social Security Administration, along with a letter from a local law firm he hired to help him obtain benefits.  He had apparently applied for SSI disability and the reviewers needed to see my notes.

I should not have been surprised by this request.  After all, our clinic receives several of these requests each day.  In most cases, I don’t do anything; our clinic staff prints out the records, sends them to SSA, and the evaluation process proceeds generally without any further input from us (for a detailed description of the disability evaluation process, see this article).  But for some reason, this particular request was uniquely heartbreaking.  It made me wonder about the impact of the “disability” label on a man like Frank.

Before I go further, let me emphasize that I’m looking at Frank’s case from the viewpoint of a psychiatrist, a doctor, a healer.  I’m aware that Frank’s family is under some significant financial strain—as are many of my patients in this clinic (a topic about which I’ve written before)—and some sort of welfare or financial support, such as SSI disability income, would make his life somewhat easier.  It might even alleviate some of his anxiety.

However, in six months I have already seen a gradual improvement in Frank’s symptoms, an increase in his motivation to recover, and greater compassion for himself and others.  I do not see him as “disabled”; instead, I believe that with a little more effort, he may be able to handle his own affairs with competence, obtain some form of gainful employment, and raise his daughters as a capable father.  He, too, recognizes this and has expressed gratitude for the progress we have made.

There is no way, at this time, for me to know Frank’s motives for applying for disability.  Perhaps he simply saw it as a way to earn some supplementary income.  Perhaps he believes he truly is disabled (although I don’t think he would say this—and if he did, I wish he’d share it with me!).  I also have no evidence to suggest that Frank is trying to “game the system.”  He may be following the suggestions of a family member, a friend, or even another healthcare provider.  All of the above are worthwhile topics to discuss at our next appointment.

But once those records are sent, the evaluation process is out of my hands.  And even if Frank’s request is denied, I wonder about the psychological effect of the “disability” label on Frank’s desire to maintain the gains he has made.  Labels can mean a lot.  Psychiatric diagnoses, for instance, often needlessly and unfairly label people and lead to unnecessary treatment (and it doesn’t look like DSM-5 will offermuch improvement).  Likewise, labels like “chronic,” “incurable,” and “disabled” can also have a detrimental impact, a sentiment expressed emphatically in the literature on “recovery” from mental illness.  Therecovery movement, in fact, preaches that mental health services should promote self-direction, empowerment, and patient choice.  If, instead, we convey pessimism, hopelessness, and the stigma of “disability,” we may undermine those goals.

As a healer, I believe that my greatest responsibility and most difficult (although most rewarding) task is to instill hope and optimism in my patients.  Even though not all of them will be entirely “symptom-free” and able to function competently in every situation life hands them, and some may require life-long medication and/or psychosocial support (and, perhaps, disability income), I categorically refuse to believe that most are “disabled” in the sense that they will never be able to live productive, satisfying lives.

I would bet that most doctors and most patients agree with me.  With the proper supports and interventions, all patients (or “users” or “consumers,” if you prefer those terms) can have the opportunity to succeed, and potentially extricate themselves from invisible chains of mental illness.  In Frank’s case, he is was almost there.

But the fact that we as a society provide an institution called “disability,” which provides benefits to people with a psychiatric diagnosis, requiring that they see a psychiatrist, and often requiringthat they take medication, sends a very powerful—and potentially unhealthy—psychological message to those who can overcome their disability.  To Frank, it directly contradicts the messages of hope and encouragement I try to offer at each visit.  It makes him dependent upon me, rather than upon himself and his own resources and abilities.  In other words, to a man like Frank, disability is anti-recovery.

I don’t have an easy answer to this problem.  For starters, changing the name of “disability” to something like “temporary psychological material support”—a substitute label, nothing more—might be helpful.  Also, rewarding recipients (e.g., not repealing their benefits) for meeting predetermined milestones of recovery (part-time work, independent housing, etc) may also help.  But the more I think about the life-affirming and empowering potential of recovery, and about how we allocate our scarce resources, the more I believe that the recovery-based—as opposed to disability-based—practice of psychiatry has much more to offer the future of our patients, our profession, and our nation, than the current status quo.  For the sake of Frank’s recovery, and the recovery of countless other men and women like him, maybe it’s time to make that happen.

Steve Balt, MD

http://thoughtbroadcast.com/2011/12/28/the-curious-psychology-of-disability/

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If you are affected by a rare disease, or you know someone who is, please feel free to contact me if you would like to share your experience on here as that would be more than welcome!

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