Iatrogenic Helplessness

I’ve been on a lot of different medications since I developed Cervical Dystonia. Necessary and helpful but some of them causing physical dependence. 

But the thing that stressed me out the most wasn’t the dependence on the drug itself.

It was the dependence on the person who prescribed it.

It was bad enough that the development of an incapacitating neurological disorder disrupted every corner of my life. But relying on medical support for so many aspects of daily functioning stripped away even more of my control, my autonomy, my agency.

Luckily, I have a supportive GP who has been as essential as my neurologist. 

But what if she got sick? Or went on holiday? Or her practice was shut down for a week because the electricity supply cable was cut? All of these things have actually happened!

What if the doctor covering for her disagreed with the prescription? Very stressful.

So much of my life, not just my health, hung on decisions and actions that weren’t mine to make. 

A missed form, a delayed referral, a lost letter… a last minute prescription. These weren’t minor hiccups. They were threats to my stability.

This is what I call iatrogenic helplessness. When the care meant to support you quietly makes you feel powerless.

It’s not a term I’ve seen widely discussed, but it deserves attention - and definition.

Certainly you’ve heard of learned helplessness, where repeated failure conditions passivity.

But this is something different. This is not learned but imposed helplessness.

Baked into the system of care itself. Not learned. Not accidental. Just a side effect of treatment. 

Unintended negative consequences of treatment are called iatrogenic. So I consider the dependence and accompanying helplessness as not learned but iatrogenic. 

When “gold standard” care for a chronic diagnosis requires indefinite professional treatment and oversight - scripts, forms, reviews, renewals - it chips away at your personal agency.

The message I took away was: You cannot do this on your own.

And maybe that’s just the way it is.

But what if it’s not?

Once that message is internalised - once you believe that you are incapable without a provider - then you are no longer just receiving support.

You are dependent.

And that shift in identity is what I mean by helplessness.

Not emotional helplessness. Structural helplessness. Systemic helplessness.

I’ve seen it in my own journey with dystonia.

I’ve seen it in other parts of the mental health system. 

And I’ve seen it in others, their agency quietly handed away as they follow the rules (aka ‘treatment compliance’).

So here’s a couple of questions I am deeply and personally invested in - as a person with a lifelong neurological disorder and as a person interested in tilting the balance of power toward greater consumer agency:

What would it take to offer care that supports people without diminishing them?

What would agency-first healthcare even look like?