FORUMS

Connect with people who understand what you are going through, seek advice and surround yourself with support. We're free, anonymous, and professionally moderated 24/7.

  • 47,612Members
  • 1,358,869Posts
  • 1,400,000Visitors
Talking through trauma and PTSD

I am not OKAY, and I am reaching out, also sharing information about treatment-resistant diagnoses.

I am not OKAY, and I am reaching out, also sharing information about treatment-resistant diagnoses.

Hi folks,

I was browsing my Instagram account this afternoon, and I’m glad I did because I learned something new about treatment-resistant diagnoses that I didn’t know before. I was diagnosed as treatment-resistant a few years ago.

Has anyone else been diagnosed as treatment-resistant?

I hope this information helps you, as it has truly helped me and given me a new perspective on my healing journey.

I relapsed nearly four weeks ago and have been struggling with a severe relapse since then. It seems likely that I will need to return to the hospital for another six weeks of intensive treatment for my substance abuse and mental health issues. I finished my intake assessment via telehealth this morning and am now waiting for the admission decision. This has probably been one of my most difficult relapses.

Last August, I began volunteering and quickly rose to the rank of Frontline Leader within a few months. This role boosted my resilience and confidence, reigniting my sense of purpose. I was almost daily at outreach sites, managing 3-4 shifts, and worked remotely from home on my days off. I have strong leadership skills and have always aimed to volunteer on the frontlines, using my personal experience to support others and create a positive impact. Over time, I started feeling emotionally and physically drained. I kept going because I was taking two weeks off in December for the Christmas holiday. The last week before my break was tough, but I managed to get through it and felt proud of myself.

On December 18, 2025, I drove to Sydney to celebrate Christmas with my family, planning to return home by January 4 at the latest, since I was scheduled to resume my volunteer role on the 5th.

The day before heading back to Sydney, I felt anxious and nervous about returning to my empty apartment and falling into my lonely routine. I didn’t want to leave my brother, who lives there, but I had no choice. I left early at 4 am and arrived home around 1:30pm. Deep down, I also knew I wasn’t ready to resume my volunteer role and felt I needed at least another week before going back.

About an hour before I arrived, I messaged my drug dealer to arrange a meet at my place. As soon as I entered my apartment, my first instinct was to get as high as possible, craving solitude and an escape from everything. I found every excuse to avoid the outside world, and three weeks later, the relapse continued, with noticeable effects both mentally and physically.

The years of substance abuse are starting to affect me, and I worry about my future if I don't stop. I will leave it at that, and below, as promised, I am providing information about treatment-resistant diageneses.

~ ~ ~ ~ ~ ~

You're Not

"Treatment Resistant."

You're being misunderstood.

AND THAT LABEL CAN DOREAL DAMAGE.

"Non-compliant" and "treatment resistant" are loaded labels.

They often get used when someone isn't improving in the way a service expects.

But they can:

  • shame people
  • make people feel hopeless
  • reduce compassion from providers
  • block access to better care
  • hide what's actually happening

Sometimes "non-compliance" is actually communication.

It can mean:

  • This treatment doesn't fit me
  • I don't feel safe here
  • My nervous system is overloaded
  • You're treating symptoms, not causes
  • I don't have the skills to cope yet

My brain is protecting me the only way it knows how

One-size-fits-all care fails complex people.

Many systems treat mental health like: diagnosis → standard program → expected results.

But real life looks like:

trauma history + environment + attachment + dissociation + survival responses + access to care.

If you ignore the full picture, treatment can become harmful.

We were labelled "non-compliant" in ED inpatient.

But the program:

  • didn't treat trauma
  • treated every eating disorder the same
  • focused on stopping behaviours, not healing the reasons behind them

When you're forced to stop behaviours, but the pain underneath isn't treated. Your brain will try to survive however it can.

That isn't "being difficult."

That's unmet need.

Why people fall back into behaviours in these settings

Because behaviours often function as:

  • emotional regulation
  • dissociation management
  • self-protection
  • control when life feels unsafe
  • communication when words aren't accessible
  • a way to survive unbearable feelings

Taking away coping strategies without replacing them with safe support equals more distress, not recovery.

Then people get blamed for the predictable outcome.

Instead of the system asking:

"What are we missing?"

It becomes:

"See? They don't want help."

That can destroy hope.

"Treatment resistant" often means:

"We don't know what to do." But the label gets placed on the person, not the system.

If someone has tried:

  • multiple medications
  • multiple programs
  • multiple therapists
  • and nothing helped...

It doesn't automatically mean they "can't be helped." It may mean they haven't had the right help yet.

Misdiagnosis can make treatment look like it "failed."

Examples:

If someone has DID/OSDD but is treated only for:

  • "mood swings"
  • "BPD traits"
  • "anxiety"
  • "psychosis"
  • "attention-seeking"

Then the plan might completely miss dissociation, parts, memory gaps, and trauma responses. And when it doesn't work, the person gets blamed.

Dissociation changes how therapy works. For systems, "non-compliance" can look like:

  • missed appointments (but there were memory gaps)
  • "lying" (but different parts hold different information)
  • "not using skills" (but the part present doesn't have access to them)
  • "inconsistent progress" (because different parts have different needs)

That isn't refusal.

That's how dissociation functions.

Trauma can make 'standard treatment' feel unsafe. Even helpful things can backfire when trauma isn't considered, like:

  • exposure done too fast
  • pushing details before stabilisation
  • rigid food plans without emotional support
  • group environments with constant triggers
  • "tough love" approaches

If your body is in survival mode, it won't respond to therapy like a calm body will.

This isn't just DID. This happens across diagnoses. People get labelled

"treatment resistant" when they're actually dealing with:

  • complex PTSD
  • dissociation
  • eating disorders rooted in trauma
  • neurodivergence (autism/ADHD)
being missed
  • chronic pain or illness affecting mental health
  • unsafe environments (still living with abusers / unstable housing)

unaddressed grief, shame, attachment wounds

Real healing often requires flexibility.

Not punishment. Not shame. Not threats.

Helpful care usually includes:

  • trauma-informed approaches
  • stabilisation before deep processing
  • collaboration instead of control
  • curiosity instead of judgement
  • pacing that matches the nervous system
  • understanding that survival strategies exist for a reason

We were told we were "non-compliant." We were told we were "treatment resistant."

But once we had the right support, we made progress we never thought was possible.

You are not broken.

You are not hopeless.

You may just need care that actually fits.

If you've been labelled "non-compliant", please hear this:

It doesn't mean you're failing.

It doesn't mean you can't recover.

  • It might mean you were never given what you truly needed.

You deserve treatment that understands you.

I am grateful for the SANE community. Stay safe, take care and be kind to yourself.

This is Paralyzed signing off 🤗

11 replies

1 - 10 of 11

In response to: I am not OKAY, and I am reaching out, also sharing information about treatment-resistant diagnoses.

Re: I am not OKAY, and I am reaching out, also sharing information about treatment-resistant diagnoses.


@Paralyzed wrote:

You may just need care that actually fits.



@Paralyzed wrote:

You deserve treatment that understands you.


No matter how many times we say this, it seems like the powers that be still aren't listening. 😡

We're still waiting for a system that plain and simply gives us the help we ask for right up front.

We're still waiting for a system that fixes the real-world problems in patients' lives (e.g. loneliness, unemployment, ect.) that have nothing whatsoever to do with their bodies or brain activity, and which can't be solved with pills or other medical procedures.

We're still waiting for a system that prefers the patient to dictate what the desired outcome(s) of the treatment are, rather then the therapist.

I am at a loss to understand how Australians can stand having a national mental health system that can't even meet these basic benchmarks.

Too many people obsessed with self-preservation, I guess. I'll never understand it.

In response to: Re: I am not OKAY, and I am reaching out, also sharing information about treatment-resistant diagnoses.

Re: I am not OKAY, and I am reaching out, also sharing information about treatment-resistant diagnoses.

IIRC, "Treatment Resistant" is defined in the DSM as tried 2 or more medications. So basically, if the first isn't a magic cure, then you technically get that label

In response to: I am not OKAY, and I am reaching out, also sharing information about treatment-resistant diagnoses.

Re: I am not OKAY, and I am reaching out, also sharing information about treatment-resistant diagnoses.

@Paralyzed can I please say... Amazing post! I think I know soo many people that will benefit from reading that - across many diagnosis. I think @tyme will like it too, as they have often spoken about the damage of the term "treatment-resistant".

I have "treatment resistant" depression - i.e. depression that the tried methods haven't helped enough. But even within that group, I am somewhat a less common presentation of it too. I agree that often it is because people just don't know what helps yet, for the non-majority cases. They invest in treatments for the statistically useful things, but when those don't help someone... there are much fewer options and almost no funding for it - or awareness of the few options that do exist. Thus I have largely had to "find my own way" the past 15 years because the doctors haven't known what to try instead (and in some cases, haven't taken an interest to either).

I am sorry you are having a relapse currently. I know there is hope, and that you can overcome this patch. I hope in this process you also are able to keep reflecting on what lead to triggering this, so you can notice those orange-lights in the future and pull-back to address your health and needs earlier to avoid the crash. I say this with love, knowing it is not always easy to do! I have done the same push-push-push-arrive-crash myself!

In response to: I am not OKAY, and I am reaching out, also sharing information about treatment-resistant diagnoses.

Re: I am not OKAY, and I am reaching out, also sharing information about treatment-resistant diagnoses.

Hey @Paralyzed ,

Thank you for sharing. It was powerful. I hear you re 'treatment-resistant'.

I personally find it such a terrible label - it takes away all hope from people, and I don't agree with it.

To be honest, I'm not sure I have heard clinicians around me use it - I hear it more with people living with mental health conditions or their carers.

I wonder where the term originated?

In response to: Re: I am not OKAY, and I am reaching out, also sharing information about treatment-resistant diagnoses.

Re: I am not OKAY, and I am reaching out, also sharing information about treatment-resistant diagnoses.

@Paralyzed

Good on you for doing the front line work with many vulnerable people on the social margins. I have always tried to stand up for the outliers. On the forum and off.

Maybe, in the relapse you were trying to hold onto the good feelings of connection you had from your family gathering.Take care and good luck on your journey and doing the good work of your mission.

I very much agree with this:

"Sometimes "non-compliance" is actually communication.

It can mean:

  • This treatment doesn't fit me
  • I don't feel safe here
  • My nervous system is overloaded
  • You're treating symptoms, not causes
  • I don't have the skills to cope yet

My brain is protecting me the only way it knows how

One-size-fits-all care fails complex people."

take care apple

In response to: Re: I am not OKAY, and I am reaching out, also sharing information about treatment-resistant diagnoses.

Re: I am not OKAY, and I am reaching out, also sharing information about treatment-resistant diagnoses.

A big thank you to @chibam @DogMan79 @AlwaysMyself @tyme @Appleblossom for your support and for your replies 🤗

I want to reply to each of you, but I don't have the capacity right now. I will find the time to reply when my mind and body can articulate what I want and need to say. I did manage to write a few paragraphs, see below 👇

During one of my hospital admissions in Sep 2023, I had A Pharmacogenomic (PGx) report analysis done. It analyses DNA to determine how genetic variations affect their response to medications, aiming to optimise drug efficacy and safety. It helps clinicians avoid adverse reactions and select appropriate dosages by identifying if a patient is a poor, intermediate, or ultrarapid metaboliser of specific drugs.

The report is ten pages long, and I’ve glanced at it a few times!!

The Pharmacogenomic Report contains four sections:

  • Review of specified medications
  • Pharmacogenomic guidance overview
  • Detailed prescribing guidance
  • Test results and information

The system is still in its early stages, and I hope that someday, mental health care will become as routine as visiting the dentist or GP for regular check-ups. Honestly, I doubt I will see this change in my lifetime.

What needs to happen is to make mental health a priority and introduce it into school curricula. All they need to build the learning material is to reference: The Body Keeps the Score by Bessel van der Kolk; The Myth of Normal by Gabor Maté and Daniel Maté; and the Internal Family Systems (IFS) model by Richard C. Schwartz.

I wish I had access to this during my childhood. I was exposed to trauma in utero and went through various traumatic events into my late twenties. My trauma should have been addressed earlier. We need to identify if a young person has been exposed to stress or trauma that has the potential to alter the body’s development, leading to lifelong health challenges.

“So many broken children living in grown bodies mimicking adult lives.”

I am grateful for each of you and for your connections.

P. 🤓

In response to: Re: I am not OKAY, and I am reaching out, also sharing information about treatment-resistant diagnoses.

Re: I am not OKAY, and I am reaching out, also sharing information about treatment-resistant diagnoses.

Hey @Paralyzed ,

Sorry to hear things have still been quite tough.

Although, I have to say, what you shared about the pharmocogenomic testing was super interesting. Never thought they did that!

Looking forward to hearing a bit more about it.

In response to: I am not OKAY, and I am reaching out, also sharing information about treatment-resistant diagnoses.

Re: I am not OKAY, and I am reaching out, also sharing information about treatment-resistant diagnoses.

Hi everyone 👋🏼

I can hardly believe how much time has passed since I was last active here—January 29th feels like a distant memory. So much has changed in my life since then that things are almost unrecognisable.

Earlier this year, I returned to treatment and completed another six-week inpatient program for mental health and addiction. I was admitted on March 3rd and discharged on April 13th. While waiting for my admission and because I was struggling both mentally and physically, I stayed with my younger brother and their girlfriend for my own safety. I had to detox in their home, which lasted just over three weeks. Those days were extremely difficult—the overwhelming shame and guilt felt unbearable, and, as always, dissociation numbed my emotions.

Unfortunately, I am about to return to the same treatment centre and hope to be admitted within the next week. My psychiatrist has put in an urgent referral. Although I thought my relapse in January was bad, this time it has been even more severe. I’ll be entering longer-term treatment—at least eight weeks—before moving on to another centre for a three-month minimum program.

Since at least May 6th, I have been using every day. The only time I’m not using is when I’m asleep, which only happens when exhaustion overtakes me. As soon as I wake up, the cycle repeats. During a relapse, my self-care routines disappear, except for brushing my teeth, which I do frequently. I rarely eat because using suppresses my appetite, and now I am unhealthily underweight.

Looking in the mirror has become impossible—I no longer recognise myself, and I can see my physical health declining each day. The shame and guilt are overwhelming. I rarely leave my apartment except to replenish my supply, and I’ve had almost no natural sunlight—just occasional vitamin D supplements, when I remember to take them.

My family believes I am clean and sober because that’s what I tell them. I have become adept at convincing everyone that I’m fine. I don’t want to worry or burden them, but, above all, I’m deeply ashamed.

How did I get here? I understand a lot about my own trauma and mental health but applying that knowledge to my life is incredibly hard. Alongside complex mental health disorders and an eight-year drug addiction, I am also facing a growing problem with online gambling. I only gamble when using, but since discovering it late last year, I’ve lost my entire savings—six figures—and am now facing severe financial hardship.

I’ll leave it there for now. I’ve wanted to check in for a long time but have been caught in this ongoing struggle. Thank you for always providing this supportive space and for giving me a voice in such an amazing community.

Wish me luck, and I’ll try to check in again when I can. I am truly grateful for the SANE community. Please take care, stay safe, and remember to be kind to yourself.

Yours sincerely, Paralyzed 🤗

In response to: I am not OKAY, and I am reaching out, also sharing information about treatment-resistant diagnoses.

Re: I am not OKAY, and I am reaching out, also sharing information about treatment-resistant diagnoses.

Hi @Paralyzed

A warm 🌞👋🏼welcome back to the forum!

You shared that so much has happened since January and changed in your life with being in and out of treatment for addiction, and struggling with intense and overwhelming emotions such as shame and guilt, as well as gambling and financial hardship - that all sounds really tough🥀. It's great to see that you are here and reaching out for support - you are not alone 🦋. I can hear you have some upcoming support in place and I hope this is helpful. If there's any support in particular you'd find helpful from the community right now, please let us know - we are here for you 🪷.

TunedIn 🌻

In response to: I am not OKAY, and I am reaching out, also sharing information about treatment-resistant diagnoses.

Re: I am not OKAY, and I am reaching out, also sharing information about treatment-resistant diagnoses.

Wow, that is eye-opening to read. I tried at least three different medications when I was in hospital for psychosis, and I've tried at least 2-3 different antipsychotics over six years since that first episode (as well as mood stabilisers), so I would characterise as treatment-resistant too. Thankfully my current psychiatrist doesn't treat me as a problematic treatment-resistant but I feel like I would be labelled like that by others who may not be as understanding.

1 - 10 of 11