If enough people are being subjected to abuse under the guide of trauma-informed care, then at what point does trauma-informed care become a product of the people it re-traumatises?
Blog I wrote for
@NSUNnews
:
As a neurodivergent person, after a particularly sociable day I often feel an uncontrollable need to stay up all night long.
During the night I value the quiet, the darkness, the lack of sensory input, the time alone, the absence of demands placed upon me, the ability to unmask.
No matter how *nice* a psychiatric unit is, it's utterly dehumanising having to get staff to take you through multiple locked doors to get something as simple as a cup of water. That's it, that's the tweet.
A relative who is an NHS doctor just did some autism & learning disability training that taught that autistic people prefer being called "people with autism".
This really highlights the need for genuinely autistic-led training.
Please never call me a "person with autism".
Psychiatric units are sensory hell for autistic people. But many of the things to mitigate the effects of it (earplugs, headphones, eyemasks) don't work for traumatised people who rely on hypervigilance to feel a crumb of safety. The constant surveillance is triggering.
I just got officially diagnosed as being autistic. I !! Am !! Overwhelmed!!
They also said in my ADHD assessment two years ago, my ADHD-like symptoms were unfairly dismissed as being definitively post-traumatic so they're getting me re-assesssed.
I guess this is positive.
Why am I tweeting about being sectioned from an account showing my real name & where I work?
Quite simply, to reverse the code of secrecy embedded in me from the abuse I endured that caused all of my mental health problems.
It's not my shame to carry. I shouldn't have to hide.
Mental health professionals should never underestimate the power their notes hold.
They have the ability to re-write our experiences without our consent, impose a narrative upon us, twist our words to fit an agenda.
But it doesn't have to be like this. Please, do better.
Posting about mental illness online under my real name & where I work leaves me oscillating between:
"What if this impacts my future employment?"
&
"I shouldn't be ashamed to be a multifaceted, open person".
Being open about mental illness should not equal unprofessional.
I never find it helpful when MH services ask "well what do you want from us?"
Um... the will to live?
Please manage my expectations by telling me what you can offer instead of asking something vague where I have no idea what I'm supposed to say.
Also - it's dismissive & rude.
It always slightly irks me when mental health professionals comment on inane, insignificant things about my appearance in their notes.
Like, what is the significance of me having three nose rings?
I love being petty. I wrote one of my uni dissertations on a philosophical defence of trigger warnings because the module's tutor "didn't believe in them". I didn't speak to him whilst writing it. He gave me a 1st, said he knew it was aimed at him, & he'll add them to the module.
When I was sectioned, I told a male nurse that even though I know it can't just be changed, there being so many male staff really exacerbates my anxiety & hypervigilance, especially at night obs.
His response: "Well there are men in the world".
Not a crumb of compassion.
@DickieRAnderson
For myself & many others, neurodivergence is an intrinsic part of who we are: not an added accessory.
I AM my diagnosis... I AM autistic.
I've seen a take that mentally ill people with a job, by seeking support, are taking services away from mentally ill people who can't work. There is already a dangerous misconception that working = well. Feeling bitter is valid - blaming & shaming other mentally ill folk is icky.
This summer, staff at a crisis assessment unit & the crisis team kept mentioning "the comfort item you hold in your hands" & alluding to it in my notes.
Every single person managed to avoid mentioning what said object was.
It was a cuddly toy potato.
I am autistic.
I was just shouted at by a staff member in London Victoria to "stop swaying".
Autistic people do this to self-regulate, especially during moments of anxiety like their train being cancelled (mine was).
Rail staff need Autism Awareness & Acceptance Training.
Today I received texts from an unknown number which were calling me cute and wanting to talk.
When I asked who it was, it transpired that when I was on the bus with my dog earlier today, he secretly noted down my phone number from her collar.
Disgusted and unnerved.
I used to work in a frontline autism service.
My colleagues didn't like me because I was autistic.
The subtle dehumanisation of autistic people is rampant in the workplace, even within organisations where you'd expect employees to "know better".
TW: suicide
I'm in A&E for physical health stuff & the level of respect I'm getting compared to last time I was here (after a suicide attempt) is striking.
No nurses are pointing & laughing at me, no healthcare assistants are shouting at me & unnecessarily manhandling me.
It's frustrating how so many autistic people have to reach crisis before being diagnosed.
This is because the diagnostic criteria are deficits-based, measured by the difficulties an autistic person has existing in a neuronormative world.
We must do better by autistic people.
I used to think that if you had "the right" mental health diagnoses combined with "the right" trauma that you get "the right" help from services.
As time goes on, the more I'm seeing that regardless of trauma & diagnoses, so, so many of us are being let down & denied support.
I used to get my current depot at the depot clinic & each time, every nurse would be so condescendingly shocked that I have what they call a "good" job.
Let's say it together: there are people who cannot reliably take oral anti-psychotics who also have a job. I am one of them.
I was just discharged from a private hospital I was sectioned in (NHS patient). I called asking if they're writing to my GP confirming my discharge, other info, etc. No, they don't do this, & were BAFFLED by this request. One of the many problems with outsourcing! Joined up care?
It's an unacceptable travesty that mental health services routinely traumatise often already traumatised patients.
Patients come to services looking for support, compassion, & validation & are all too often met with mere crumbs or iatrogenic harm.
We all deserve so much better.
Convos by MH professionals about service improvement seem to place so much emphasis upon access (& rightly so) but say next to nothing about service quality. It's all well & good if you can access a service, but what if you're met with inappropriate, harmful treatment? Great!
Conversation I had whilst detained on a psychiatric ward:
Me: Why do you ask us for things we'd like to improve when you respond to every suggestion with a feeble excuse/the use of blanket restrictions?
Lead Nurse: It's co-production.
...
Reader, this is NOT co-production.
The quirkification & gamifying of dissociative identity disorder is endlessly frustrating. For me, there's nothing "fun" about it. Why are we making blackouts, amnesia, identity confusion, & identity alteration seem enviable? We should show the disorder for what it is - painful.
When I was in a psychiatric hospital, the ward had a "sensory room" that was no different to other rooms but was empty: the same lighting, carpet, walls, sound levels.
There was nothing sensorily soothing or regulating about it.
Please don't claim this is a sensory room.
Last night, despite taking zopiclone, I didn't have a single crumb of sleep due to multiple male waking night staff on the ward talking so loudly and watching films right outside my bedroom ALL NIGHT. Left me cowering in terror. But being trauma-informed is all the rage, right?!
Feel so relieved that the ward's psychologist, psychiatrist, & doctor all agree that for me, someone who they are adamant is autistic (awaiting assessment) & traumatised with DID & CPTSD diagnoses, all think being here isn't therapeutic for me. Hopefully I can be home soon!
The crisis team agreed that if they can only send men to my house without a woman too, then I'll have my appointment at the hospital.
Today, guess who I open my door to? Two men!
Love when survivors put up boundaries, services agree to respect them, then don't follow through!
@PavPub
As an autistic person who used to work at Pavilion, I'm disappointed in the book's description & chapter info: content about 'mild' & 'severe' 'symptoms', 'treatment', ABA, 'dealing with' autism, 'behavioural management', etc. Were many autistic people involved in its creation?
@withoutstigma
okay now that you're supposedly listening to autistic people - PLEASE reconsider the decision to refuse to give any information about waiting times for autism assessments. surely the service should take into account how distressing this uncertainty can be for autistic people?
I'm currently sectioned in a local private psychiatric hospital.
I'm terrified of my DID & CPTSD diagnoses being changed or removed. I was diagnosed by the Maudsley (paid for by local commissioners) so no one local to vouch for me.
This is my biggest fear about being here :-(
I know discharge from hospital can bring up a lot of conflicting feelings for people, but I've just got home & couldn't be more relieved to be out of such an untherapeutic environment. Now hopefully back on the journey to seek individual NHS funding for specialist therapy.
The most compassionate, genuinely trauma-informed NHS healthcare pros I've ever been seen by have not been in MH services. They were an epilepsy consultant & a maxillofacial surgeon, both people I only saw once. If staff in these specialties can do it, why can't MH services?
@DickieRAnderson
If a healthcare professional is being given genuinely autistic-led training in a neuroaffirmative way, it's highly likely they'll be informed that most autistic people prefer identity-first language.
I genuinely believe that self-diagnosis is valid but for me, I've never felt able to say I have a condition until I have a formal diagnosis even if I *knew* I had it. I need that official confirmation. Everyone should be able to access free assessment if they want it.
Within seconds of an inpatient hospital stay for physical illness, I had to explain that one cannot "have a little bit of autism" & that Ehlers-Danlos is a real condition, not "a doctor's bad handwriting".
Oh, happy days!*
*Not a huge deal, but worth educating the nurse about.
Appearing "functional" isn't necessarily an accurate way to measure risk or need for support.
Historically, I'm significantly more at risk of harming myself when "functional" & working full time than when catatonic in bed, debilitated by flashbacks & dissociative seizures.
I know psychiatric wards are *supposedly* safe but a nurse left a massive ligature risk on my bedside table all day & night. I eventually handed it to staff in the middle of the night, but it's carelessness like this that WILL and HAS killed people. I considered it. DO BETTER.
On social media, I keep seeing typically autistic traits being attributed to ADHD.
I find it really confusing as to me - an autistic ADHDer - they are very different.
Can anyone explain this?
/genuine question
Today is
#DIDAwarenessDay
. I absolutely hate having DID. For me, there is nothing redeeming or comforting about it. Every waking moment living with DID is distressing, uncomfortable, disconcerting, painful, confusing. I would do anything not to have it. That is all I have to say.
Having professionals with lived experience of a certain mental health condition deliver a course on said condition does not mean that the course is good quality, well-informed, or what patients want & need.
Yours sincerely, someone who has done a year long course like this.
The implication that those of us who say we're mentally ill are misinformed/naive/being duped/pawns in some wider debate which we're too wedded to the evils of psychiatry to see is hideously stigmatising. We know better than anyone how harmful - & how helpful - psychiatry can be.
Just putting it out there that if I hadn't received my dissociative identity disorder diagnosis when I did, I highly doubt I'd be alive now. But go on, tell me I'm being duped by psychiatric orthodoxy & that diagnosis is always harmful for people who have experienced trauma.
are ‘psychotic’ because they hear and see hallucinations after being traumatised and sleep deprived,
are ‘manic’ because their mind and thoughts and speech races after trauma
have ‘PTSD’ because they have panic attacks and flashbacks to what happened,
Why are mental health patients expected to "sit with our distress" & "use our skills"?
Yet, mental health professionals - if they deem us to be "too distressed" - can hang up the phone on us, walk out of our appointments, or discharge us?
The imbalance is REAL.
@PavPub
Allistics who know/work with autistic people is not a substitute for co-production or collaboration with us. The language/concepts/book name are offensive & harmful to autistic people. We - & the children whose parents/carers/teachers will read this - deserve so much better.
I am mentally ill, not experiencing poor mental wellbeing. For you to tell me and so many others otherwise is paternalistic and condescending. You do not speak for mad people. Let us define our own experiences. I am mentally ill.
TW: suicide, iatrogenic harm
Memes: "if you're honest with your therapist you'll end up in a psychiatric ward".
Reality: someone shares their plans of suicide & is met with "you have capacity to kill yourself"/"take responsibility".
This is the (often fatal) reality in the UK.
Just submitted a 4000 word complaint about my negative experiences of mental health services to the ICB.
I touched upon DID discrimination, being given harmful & inappropriate treatment, being told I have capacity after a suicide attempt, etc.
*Puts my account on private*
TW: Mental Health Act
Today I had my first ever MHA assessment & am being sectioned. I'm waiting at home (with support) for a bed.
My local hospital is *that hospital* posting emoji-covered photos of patients. Yup.
Any advice for a very scared, overwhelmed creature?
My requests for psychiatric medication reviews have been rejected every single time I've asked for over two years. Now that I'm in crisis, I was seen by psychiatrists to review it within a couple of days. This shouldn't be the way it is. We need to be taken seriously earlier on.
I will forever be grateful that the psychiatric ward I was on recognised that I am autistic (undiagnosed at the time) & said they saw how traumatising the ward was for me because of this - so discharged me.
Inpatient MH professionals must be attuned to the needs of autistics.
During university, I once lived with a girl (who knew about my mental health problems) who would constantly tell me how "lucky" I was to get reasonable adjustments. I told her that I'd rather not have experienced the trauma that caused the need for those adjustments.
#ableism
It's gutting to think how for lots of us, the cost of our traumatising inpatient psychiatric admissions could pay for so much community support that, if given in the first place, likely would have prevented said expensive admissions. I can't help feeling really bitter about this.
Today it was super satisfying to stand up in front of a room of almost 100 mental health commissioners, service managers, etc. from my area & tell them about my experiences of being harmed by services a.k.a. their colleagues. Professionals - iatrogenic harm is REAL!!!!!!
Before my psychiatry appointment today (& all week leading up to it), I was shaking, crying, hyperventilating, having heart palpitations, sweating loads, not sleeping, feeling sick, & being overwhelmed by anxiety.
Mental health services shouldn't have this effect on patients.
I was just asked, "if you could wave a magic wand, what would I do for you?".
No one - including yourself - has given me a single crumb of information about you, your team, & your remit. I literally have no idea what you offer.
How are we expected to "engage" when denied this?
Autism/ADHD: "Maybe some noise-reducing earbuds would be helpful to reduce sensory input & therefore distress".
CPTSD/DID: "No! We must hear every single noise around us at full volume & intensity. Hypervigilance = some semblance of safety".
This conflict never ends.
Mental health professionals: "We specialise in supporting people with post-traumatic diagnoses who have experienced complex trauma".
People with DID: "Hi".
Mental health professionals: "We don't support people with THAT diagnosis or THAT complex trauma history!"
#dissociatwt
All too often, certain 'experts by experience' are chosen for the role because they validate exactly what the organisation wants to hear.
Many organisations don't want to hear from those of us who are jaded due to iatrogenic harm & willing to call out bad practice & abuse.
Should experts by experience and patient representatives be required to be hopeful, positive and constructive on the terms of those who hold the reigns on whether to listen to them in decision-making? Sometimes this feels deeply uncomfortable to me.
*This* "moody teenager" actually had undiagnosed conditions including dissociative identity disorder, complex PTSD, depression, anxiety, autism. But yes, blame mentally ill & neurodivergent teenagers for the lack of NHS resources because they're an easier target than politicians.
'The time for niceties has passed. There are no magic resources in the NHS. Every minute spent discussing a moody teenager is a minute less spent seeing a palliative patient,' says columnist
@dr_musgrave
I absolutely do not appreciate having "multiple personality disorder" in my patient summary.
Because of this coding, now occupational health - & therefore my new line manager & employer - will be told I have "multiple personality disorder".
The coding system needs updating.
TW: suicide
We need to be explicit when asking autistic people about suicide.
I've been asked if I'm planning on doing anything "silly" & usually get met with an eye-roll when I say "I'm autistic - clarify what you mean by 'silly', please".
Just ask us... without euphemisms.
No. The toughest battle I've ever had to face - and continue to face - in my entire life has been with people who have abused me, not myself. I will not have this put on me.
Just got a letter from a psychiatrist to my GP describing me as "this pleasant young lady".
Pleasant young lady?!
Where's my obligatory validation of a psychiatrist telling my GP that I "present as reasonably well-kempt"?!
@dear_gp
@MadCovid
Important thread for anyone who thinks that reframing mental illness as "distress" must be a positive thing for people experiencing it. For me, it is not. For Wren, it is not. For countless others, it is not. It's dismissive, gaslighting, & denies us the understanding we need.
Honestly, the constant wave of tweets making their way onto my feed which repeatedly declare that mental illness is actually just "distress" that we need to learn to tolerate (instead of chasing a "fantasy" to live without pain), are making me so angry. Reducing mental illness 1/
"Challenging behaviour", "refusal to engage":
Who refuses to engage with who?
Is it that services refuse to engage in a way that is accessible & safe for patients?
Whose behaviour challenges who?
Is it that services display behaviour that is challenging for patients?
TW: suicide
Something I rarely see spoken about is the ambivalence that can come with being suicidal: being frantically desperate for support & for someone to help, yet feeling calm & at peace with your decision to die.
Ambivalence does not make your suicidality any less valid.
Hands up if you've ever continued to see a therapist you knew was abusive as you knew if you walked away, you'd be deemed:
• Difficult
• Non-compliant
• As not really wanting to improve your mental health
• Entitled
I know I have continued with such therapy for this reason.
If enough people are being subjected to abuse under the guide of trauma-informed care, then at what point does trauma-informed care become a product of the people it re-traumatises?
Blog I wrote for
@NSUNnews
:
After hugely damaging therapy, I was told by specialist services that therapy would always be too retraumatising for me so I should never seek it out again & should instead "focus on living my life". They insisted I was immediately discharged from all my support at the same time.
The NHS is letting people with severe mental illness down. NHS orgs are focusing their work on mild/moderate mental illness to the detriment of people with severe mental illness.
Or if they answer, mental health crisis lines often bait us into suicide attempts; give unhelpful, condescending advice; verbally abuse us; or say we have capacity.
All too often, you suffer if they don't answer, and you suffer if they do answer.
NEW and IMPORTANT: at least 418,000 calls to mental health crisis lines went unanswered in 2021-22.
20% of calls went unanswered.
And that is just the figures from the trusts that responds!
Many reported having an experience similar to Hannah
(Below)
@mud_the_kid
TW: suicide
"I ain't going to coroner's court for you & neither will your therapist, the trust, or the ambulance service. You have capacity". Then hung up.
This was straight after the ambulance service told her (MH crisis line) I was alone at home & had made a suicide attempt.
You are still a valid mentally ill person even if you:
• Have never been in hospital
• Have never been detained under the Mental Health Act
• Do not take medication
• Are not in receipt of disability benefits
• Are unable to access therapy
• Have no diagnosis
Good support isn't always offering solutions.
During my recent mental health crisis, the most helpful thing that anyone said to me was someone from the crisis team.
She said, "There IS a place for you in this world".
This was exactly what I needed to hear at that time.
Today I had my depot injection for my mental health.
My psychiatrist prescribes a depot due to me finding oral medication triggering, despite me not being in the demographic who are usually given them.
This is how a psychiatrist can be genuinely responsive to a patient's needs.
It's a wonder to me how anyone, even those who aren't traumatised or neurodivergent, can bear the constant noise on psychiatric wards. I know different patients & staff cope differently with the high pressure environment. It's relentless. I am begging for a few crumbs of silence.
There's a difference between when mental health professionals support someone to understand that they experienced trauma
& when they impose a trauma narrative upon someone (who doesn't identify with it) & insist that this trauma is the sole cause of their mental illness.
@micol_ascoli
So often patients asserting their needs, wants, and expectations is deemed to be combative, manipulative, evidence they don't really need support, etc. It's hard to know what to say for fear of it being pathologised or used to deny you support.
TW: suicide
.
.
.
I have CONDITIONS caused by experiences of complex trauma.
My MEDICATION has reduced my propensity to plan suicide.
Even if my symptoms lessen, my conditions are still LIFELONG.
My trauma-informed therapist supports me to understand myself ON MY OWN TERMS.
In hospital today they tried to move me from a side room to a bay. I got very distressed & had a shutdown. Luckily, they reshuffled people & recognised I need my own room. This has really highlighted the need for me to make an autism passport from a template when I'm discharged.
What's wrong, babe? You can't postpone your suicidal crisis until the designated date & time we give you? You don't think our team of Recovery Advisors (Peer Support Workers) telling you to connect, take notice, keep learning, be active & give will be helpful?
The most traumatising experiences I have ever had with health services were perpetrated by ... a specialist complex trauma service.
I'm not an isolated case.
Supposedly "trauma-informed" services are routinely re-traumatising already traumatised people.
This is widespread.
TW: suicide
"I ain't going to coroner's court for you & neither will your private therapist, the trust, or the ambulance service. You have capacity". Then she (NHS rapid response service) hung up the phone on me.
This was seconds after a suicide attempt when I was home alone.
DID isn't rare - it's underdiagnosed.
It's dissociation - not disassociation.
Perpetuating the idea that DID is often faked is damaging to those of us who have it.
It's disappointing to see a Consultant Forensic Psychiatrist encouraging viewers to be skeptical about DID.
Disabled & chronically ill people already face so much disbelief & gaslighting from medical professionals & the people around them. For a journalist to publish this disgusting article is low, really low. This kind of rhetoric kills people.
"You can get addicted to being sad and sick."
My latest is about the spoonies: a tribe of mostly female forever patients who you'll find where the internet meets healthcare meets being very, very sick.
I don't know what was worse as someone with inflammatory bowel disease:
A psychiatric unit where...
Staff watched me on the loo from a meter away.
Or
I had to ask staff to unlock the bathroom door each time I needed it.
Psychiatric patients should be afforded more dignity.
Waiting lists for mental health support are too long & don't guarantee access to good therapy, but many of us are denied even that. Not being queued to potentially receive support means we don't have that crumb of hope. The power of that crumb of hope is not to be underestimated.
*Begging* UK researchers to do research into dissociation that isn't exclusively about DP/DR! These experiences warrant research but for those of us with DID, they can often pale in comparison to our other dissociative symptoms. Our less palatable symptoms are rarely represented.
Often peer support worker/practitioner roles require either first hand experience of a mental health condition OR experience supporting someone with one.
Thoughts?
I see the value in both perspectives but for me, peer support should be based upon having first hand experience.
I've been harmed by psychiatric medication. I've also been helped by it.
I've been harmed by psychiatric diagnosis. I've also been helped by it.
All these things can be true at the same time.
There is space here for people to share nuanced experiences of psychiatry.
In the last 2 weeks, I've had 25 ish different doctors, MH nurses, psychologists & psychiatrists meet me in person & tell me I'm blatantly autistic. Wildly awkward if when I'm assessed I'm not, or told I'm actually just traumatised based on the fact I have DID & CPTSD diagnosed.
I once had a medical psychotherapist get up & run out of my appointment when she was mid-sentence. She never returned.
Weeks later, my Lead Practitioner admitted it was strange & I never heard from the medical psychotherapist again.
A patient would be pathologised for this.
Being told I have "treatment-resistant" depression doesn't offend me. I simply didn't respond positively to many antidepressants & trauma therapy. No medical professional has used this as evidence that I'm "incurable", it's just a term that reflects my treatment experiences.
Telling people that they have ‘treatment-resistant depression’ and there is no ‘cure’ for them shouldn’t be allowed in practice. There is no evidence for it, and it worries me how absolute and final this sounds.
@commaficionado
@PavPub
You publish some great autistic authors & allistic clinicians who co-produce their publications. You should know better than to publish a book that WILL cause harm to autistic children. I'm sure your other authors who write neurodiversity-affirming content would feel the same.