Leaving Behind the Disease Identity
I hope I’ve succeeded in conveying the message that psychiatric drug withdrawal is often more than pharmacology, dose reductions, and withdrawal symptoms. For many, stopping medication also represents a departure from seeing themselves as ill and lacking agency. This important process can be challenging if those around them continue to embrace the medical model and view them through the lens of illness as a “patient”.
Even if this doesn’t apply to you personally, I encourage you to keep reading. It will provide you with an understanding of the daily challenges faced by those who do.
I recall a former client, Ulrik, who arrived at my office one cold and grey Scandinavian February morning, wearing the broadest smile. He had just been to the student counselor the Friday before and was thrilled to be re-enrolled at university, having recently tapered off the antipsychotic that for so long had numbed his emotions and the cognitive abilities he needed to study. Yet it wasn’t just his return to university that was the source of his smile – it was his encounter with the student counsellor. She was the first person he’d met in years who didn’t know he had once been a psychiatric patient diagnosed with – and now fully recovered from – what psychiatry labels paranoid schizophrenia. This made all the difference in how she saw him.
Like many people with psychiatric labels, Ulrik’s diagnosis had levied such stigma upon him that his completely normal emotional fluctuations and reactions were often misinterpreted as symptoms of illness.
Those around him had grown accustomed to seeing him through the lens of illness, constantly scrutinizing and judging him, and his freedom to act naturally was heavily limited as a consequence. But for once, this way of being classified in advance as a sick person was gone. For Ulrik, it was a relief not to be defined and judged by his diagnosis. “She saw me as a regular person with aspirations, dreams, and a future full of possibilities. I haven’t felt this way in years. She had expectations of me, and that made me want to try,” Ulrik said, clearly emotional upon realizing the contrast with how many of his friends and relatives still sometimes viewed him as fundamentally sick and defective.
That Monday morning, our entire hour together centered on the profound impact of others’ perceptions and how they shape a person’s path to recovery. “I also need to be part of something where I am need-ed and people count on me, where my contributions are valued and expected. People with jobs and families can easily take that feeling for granted – but for me, it’s what I long for most,” Ulrik added thoughtfully.
Breaking free from over-identification with a diagnosis can be challenging, especially if the important people in your life continue to view you through that diagnostic lens. One common obstacle is when loved ones undergo so-called psychoeducation, where they are “educated about the illness” and where a person’s supposed “lack of insight” is interpreted as part of the illness itself.
The question of disease identity – becoming so intertwined with a diagnostic label that it becomes an identity – is too big to fully cover here, and frankly, I believe it’s not appropriate for professionals to intrude into such deeply personal territory. Instead, we should leave the subject to those who have lived through it firsthand. Fortunately, one such book has just been written by American author and director of the Inner Compass Initiative, Laura Delano, titled Unshrunk.
Research also indicates that family dynamics can significantly impact the recovery process. A meta-analysis dating back to 1998 showed that a family’s degree of what’s known as “expressed emotion” could predict the likelihood of relapse of psychosis, depression, and eating disorders. Expressed emotion is defined as “emotional over-involvement and critical communication from family members and closeones.” In such cases, addressing the issue with individual psycho- therapy can inadvertently problematize the individual who may merely be the bearer of symptoms within a broader family dynamic. Family therapy and Open Dialogue may be necessary.
A Strategic Choice
Many people have to be strategic about who they involve in their efforts to taper off psychiatric drugs, knowing that the decision may not be well received or supported by everyone around them. It’s understandable yet unfortunate that this is sometimes the case, as support from loved ones is crucial to both coming and staying off psychiatric drugs.
From loved ones, I often hear that the powerlessness and fear of revisiting past struggles from before the medication can be a difficult combination. For both parties, I hope this chapter has eased the feeling of powerlessness and that together you can see concrete, practical steps to take if withdrawal and emotional re-emergence becomes challenging. The situation is likely new and unfamiliar to both of you, and there is often an element of having to chart a path through it together.
And to loved ones: Remember that simply being present as a human companion offers a powerful antidote to low mood, racing thoughts, and anxiety. In the end, the same principle applies to any form of sup- port during difficult times: The more atypical and to you incomprehensible your loved one’s reactions and behaviors, the more crucial it becomes to remain open and curious about what they are experiencing. Strive to look beyond the surface – to the emotions, experiences, and unmet needs they are grappling with.
This excerpt is published with permission from the author, Anders Sørensen.
