Recently someone expressed skepticism in response to my claim that OCD can make life barely worth living. Can it? We’ll get to that soon, but let me start by laying my cards on the table. I believe psychiatric illness is a humanitarian catastrophe. I believe that psychiatric illnesses must be seen as kinds of chronic suffering condition, with staggering implications, and that the perspective society often takes- of considering mental illness insofar as it affects function and suicide risk is profoundly selfish. I would argue that chronic suffering conditions (physical and mental) are on a shortlist of the worst problems we face along with, among others, economic insecurity and poverty, interpersonal violence, over-incarceration & the poor use and management of incarceration, and aging.
Now let’s look at OCD.
To begin with, let us anchor our expectations about the effects on happiness of various conditions and changes. See for example this graph by Kieran Healy prepared using data from Matthew Killingsworth: which gives a fairly typical estimate of the effect of moving from 15,000 dollars per year to 480,000 (an increase of 32x) - less than half a standard deviation.
Similarly, the well-being shock of a partner or child dying is about 0.48 (see Asselman and Specht here ).
The lessons I’d take from this:
Measured happiness, surprisingly, doesn’t move around too much in response to life conditions or events.
Half a standard deviation represents a big effect on happiness.
Now what about OCD? Stengler-Wenkze et al. (2006) found that subjective quality of life is about 0.4 standard deviations lower in OCD sufferers than in Schizophrenics and about 0.85 of a standard deviation lower than in people not affected by OCD. This is broadly in line with the results of other studies of OCD patients, e.g. see this, and this. Developing OCD is one of the gravest things that can happen to an individual, seemingly- at least in some samples of OCD sufferers- leaving people less happy than someone whose partner died recently. That’s a first pass, of course, I suspect a lot depends on how poorly controlled the OCD is in the sample, but it is a telling first pass. If you can’t understand why the suffering caused by OCD is so great, I urge you to consider the situation of a mother who is constantly petrified of stabbing her own child to death- a common symptom of OCD.
My strong suspicion is that OCD, and other mental illnesses, deserve far more aggressive treatment strategies and far more aggressive research programs than are now typical. The tradeoff should be calculated not just, or even primarily, on the basis of restoring function but managing pain. We have good measures for assessing pain and suffering, and the common refrain that pain should be downweighed because it can’t be observed doesn’t cut it. Doctors, researchers, and the population at large need to grasp, far more so than at present, that someone who can function well but is in great pain is not a well person, present behavior does not reveal the preferences of a culture that takes psychic pain seriously- for example, there have been, as best I can tell, only two clinical trials of psychedelics as a treatment for OCD.
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Well, a friend with OCD got parents that think she's now healthy, because she is good enough to do close to a full workload at University with average grades while getting rather good support (obviously not from them). She's overall rather miserable and working all the time.
Naturally, they keep telling her stuff that sounds like it is out of a guidebook "how to make someone's OCD worse" and are not willing to look for help themselves. Medical treatment is one side, the other is that society and parents in particular accept the existence of mental illness and how they might risk causing such in their children.
I was deeply unwell for many years before I learned how to handle OCD. Had no idea there was data showing it this much of an impact on well being!
I remember lamenting to my therapist about how I had wasted a lot of my youth on compulsive behaviour, and he said "well, maybe you didn't waste it, maybe it was stolen from you" and it helped put it into perspective. It's a rough condition to live with.