However, the story didn’t clearly detail the role of medications in her life, and as Keris can attest, the published article seems to serve as something of a Rorschach test for readers. Those inclined to think of medications as essential to recovery may read the article and conclude that must be true in her case. Those who think of psychiatric medications in a more critical light may read the story and conclude that she probably uses the medication very infrequently. I ran into Keris last weekend, where I asked about this Rorschach aspect of the story, and she thought it would be important to publicly clear up the details of her medication use, since she has now been presented, in this very visible newspaper venue, as a model for what is possible.
In the Times story, her treatment regimen is said to consist of a “combination of medication as needed and personal supports, including an intuitive pet dog, the occasional weekend stay at a luxury hotel — and, not least, a strong alliance with a local psychiatrist.” Then, a little further along in the story, she is said to have started on her journey to recovery in 2006, when her psychiatrist got her to “try certain antipsychosis medications.” Finally, readers learn that researchers in southern California are studying a small number of people with a diagnosis of schizophrenia or schizoaffective disorder who are thriving, with Keri one of those in the study, and that the researchers state that most in the study, like Keris, “adhere to a medication regimen.”
Add those bits of information together, and some readers conclude that Keris, in one manner or another, must take antipsychotics — and perhaps other psychiatric medications as well — on a regular basis. Keris told me that many doctors and other readers called her psychiatrist, asking for information on the specific drugs, or drug combination, that she takes. However, other readers focus on the line that she takes “medication as needed,” and concluded that she probably takes them fairly infrequently.
Here is the detailed story of Keris’s use of psychiatric medications. From 2000 to 2006, she regularly suffered from thoughts of suicide and hallucinations, and it was toward the end of that time that her psychiatrist, Timothy Pylko, convinced her to take antipsychotic medications on a daily basis. She did so for about six months, but it has been at least five years since she used antipsychotics or any other psychiatric medication in that regular way.
Once she stopped taking psychiatric medications daily, she began to use them on an as-needed basis “when all of the [non-drug] techniques I usually use do not work and I am truly unable to work, hang out with my friends or participate in life.” For a time, she found that she would need to take an antipsychotic on the “very rare occasions” when “the voices are very distracting and any kind of stimuli (light, noise and touch) cannot be tolerated.” She would take the antipsychotic for two weeks or so, “while also engaging as much as possible in life.”
However, she found that even this occasional use of an antipsychotic had its drawbacks. “Truly, what I have found in returning to work is that this approach is not as successful, as the meds usually make me too tired and ‘cognitively slow’ to work effectively. It has been a while since I used this approach, and the last time I did, I more than likely took time off while on the meds until the side effects diminished, and then I came back to work and tapered off.” She has not used any antipsychotic medication for more than a year now.
She still does use an anti-anxiety medication on “rare occasions.” She’ll turn to this class of drugs when “I have so much anxiety that I am incessantly pacing, cannot physically keep still and the type of OCD that I have kicks into overdrive.” She says such moments are now “incredibly rare,” and that when she does take an anti-anxiety med, she does so “mainly at night.”
Keris is fortunate to have a psychiatrist who has supported her use of medications in this way, on an as-needed basis for those rare occasions today when her anxiety or her voices flare up to intolerable levels. She consults with him on the dosage and for how long to take the drug, and “he provides instructions on how to taper [from the drug] as well.” As a result, she has a therapeutic relationship with her psychiatrist that works very well and is an essential part of her recovery.
The reason that is it important to know this aspect of Keris’s story is that, in her use of medications on “rare” occasions, she is not following the model of “medication adherence” that is usually promoted to the public-and to patients-as essential and necessary. If you look at her story of recovery, hers is one of using antipsychotics on a daily basis for a relatively short period of time, and then developing “personal supports” and finding meaningful work as a foundation for a more lasting wellness. And once she stopped taking psychiatric medications on a daily basis, she used them only as temporary aids when her symptoms flared up. In essence, she was “non-compliant” with the usual model of drug treatment for someone with a schizoaffective diagnosis, and today, given her very infrequent use of any psychiatric medications, she would be best described as “off meds.”
There may be many paths to robust recovery, but what is clear from the research literature — and from stories like Keris’s — is that one possible path involves being “off meds,” or using them in the selective, occasional manner that she does. In Martin Harrow’s 15-year study of schizophrenia patients and patients with milder psychotic disorders, the off-med patients had much better long-term outcomes, and for those with milder psychotic disorders, those who got off psychiatric medications — as a group — had good long-term outcomes.
It is refreshing to see the New York Times publish Keris’s story, for it presents a vision of recovery that our society needs to know and embrace. We can read such stories and then ask, okay, so what do we, as a society, need to do to help make such recovery commonplace? But as we ask ourselves that question, it is important to know the details of Keris’s story in terms of her medication use, because such clarity can help us reconceptualize what is possible. Her story, together with a close look at what the research literature tells us about long-term outcomes, can ultimately help us imagine a radically different paradigm of care.
For more of Robert Whitaker’s work — His two seminal works on psychiatry are: Anatomy of an Epidemic: Magic Bullets, Psychiatric Drugs, and the Astonishing Rise of Mental Illness in America and Mad in America: Bad Science, Bad Medicine, and the Enduring Mistreatment of the Mentally Ill
Whitaker’s website is here.