All mental health care, all health care, needs to be TRAUMA INFORMED CARE.

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I’m feeling frustrated about the barriers to receiving high quality, publicly funded, trauma informed mental health care.  Especially the barriers faced by trans and gender non-conforming folks.

I know that I’m blessed to live in a country that has free universal health care, but we still have a two-tiered system.  Psychological care, social work and counseling that happens outside hospital settings is fee-for-service.  There are many barriers for those without finances or work place insurance in terms of accessing mental health care.  Based on my own experiences, I believe that medication alone should almost never be the first line of treatment for mental illness, and that medication should never be used without corresponding counseling of some type.   This does not mean that I’m anti-medication or anti-choice or even fully anti-psychiatry.  It just means that I see mental health as more than just a chemical imbalance in the brain.  It means that I know that supportive, validating counseling can be helpful in treating most illnesses.  I highly value feminist based counseling, intersectional approaches, peer support models and any type of counseling where the patient has a say in what happens and is treated like the expert in their own lives.

I’m personally quite negatively biased against cognitive behavioural therapy.  That does not mean that I don’t think it has a place, or that it can never be useful.  I believe it can be helpful with certain types of issues, such as OCD.   But CBT leaves a LOT to be desired in relation to trauma therapy.  It focuses too much on the individual thoughts, feelings and behaviours and too little on trauma, societal oppression and practical barriers.

When I was younger, and I first entered into the mental health care system, my parents found a clinic and doctors that supposedly were experts in the field of eating disorders.  Now, maybe they were good doctors, but I can say with absolute certainty that they were not trauma informed.  I don’t really remember every being asked exactly WHY I had developed anorexia, or if anything had happened to me.

I’m not an expert, by any means, but I know that young people rarely (if ever) develop eating disorders and self harm just on a whim, out of the blue.  Generally eating disorders are symptoms of a larger problem, generally eating behaviours are coping techniques to deal with something.

I was a smart teenager.  I knew to some extent why I wasn’t eating.  I had learned that it was an effective way to zone out, feel lighter, feel empty and take up less space.  I became addicted to that feeling of zoning out, it helped me cope with the sexual abuse I was experiencing.  It wasn’t about my looks, it wasn’t about losing weight and it wasn’t about existential angst (per se).   I’m not sure if anyone actually ever asked me why I wasn’t eating.  And after a certain amount of time had passed, it became irrelevant to everyone.  Nobody cared why, they only cared about me eating so I wouldn’t die.  I didn’t believe I could die.   I’m not sure I REALLY cared if I died. I think I did at that time, but I certainly didn’t care by the time I started taking anti-depressants.  I pretty much welcomed the idea of death and started to think about suicide at 17.

These psychologists I went to see worked from a CBT model.  I remember being 16 and sitting in the psychologist’s office while he drew diagrams of how thoughts impacted feelings which impacted behaviours which further influenced thoughts and feelings.  I quickly picked up on the pattern of it.  I realized that a very specific set of responses were the desired outcome.  I followed the pattern and started saying what he wanted to hear.  I didn’t internalize any of it.  It became a game to me, not a game to manipulate or hurt anyone, but a test to see if I said what was expected if I’d be allowed to go back to school and stop missing music class for the appointments (which to me appeared pointless).

Fairly soon after that, I became physically starved to the point my brain wasn’t really working rationally anymore.  The physical side effects of the disease confused my brain and the restricting and exercising became obsessive to the point of OCD.  The behaviour self perpetuated and I lost track of why I started doing it.  I lost track of what happened to me.  I lost track of the abuse.  I lost track of everything.  I felt panicky most of the time.  I was always cold.

When someone is that sick, no type of therapy is going to work.  Eating is the only treatment.  I went to an inpatient program, started the process of weight restoration and my mind gradually cleared.  I don’t remember being asked in treatment why I starved myself to the point of near death.  I think people were relieved that I was eating and that I returned to some level of semi-normalcy.   I was still thin.  I still had strange eating habits and anxiety around food.  I still avoided eating with most people.  But I was well enough to “pass” as recovered.

I began to recover some memories around the age of 18.  But they weren’t concrete at first.  They were flashbacks, physical reactions, nightmares.  I remember talking about it indirectly to my boyfriend at the end of high school.  Telling him that something had happened with my last boyfriend.  I don’t remember if I shared many details.  I think the idea was only slightly formed in my head.   I didn’t connect the dots and fully disclose until I was 20.

Then I was thrust into the psychiatric, medical model.  I was drugged and drugged and drugged more.  The worse I got, the more drugs were given.  I was medicated to the point I could barely stay awake during the day time. I felt foggy.  I gained weight.   I was diagnosed with PTSD, but I still didn’t receive trauma informed care.

I did an inpatient program for PTSD.  It helped a LOT.  I learned a lot.  But I couldn’t fully actualize the learning because I was on too much medication and I was in an abusive unhealthy relationship.  I knew by then that the trauma piece was at the centre of my struggles, but I didn’t fully comprehend that my current situation was a major factor.

All this to say, that my life story is a testament to the perils of practicing medicine without considering the impact of trauma on physical and mental health.

I’m so passionate about looking at the roots of why people cope in the ways they do.  What societal circumstances and traumas caused them to cope in the ways they do?

Now I’m a parent.  My children struggle with anxiety.  My younger child is transgender.  She has secrets.  There are things she won’t talk about to anyone.  She struggles with focusing sometimes.  I see a lot of signs of trauma and of the impacts of things she has lived through.  Experiencing transphobia in and of itself is trauma.  Being misgendered, people using her old name, being treated as less than a real girl, being told that her mom is crazy for “forcing her” to be a girl….I could go on, but it’s a lot.  A lot for a child.  Rejection by a parental figure is one of the clearest predictors of mental illness in trans children and youth.  Acceptance is the highest predictor of mental health.

Again.  It’s not rocket science.  Of course a child will feel safer if they are accepted.

Now I’m the one trying to find the doctors, trying to access the care, trying to get referrals, wait on lists, be taken seriously.  20 years later, I’m still fighting to find a mental health care provider who truly understands the impact of trauma on a child and who is willing to practice trans positive, trauma informed care.  I don’t want her forced into CBT.  I don’t want her to be medicated.  I want someone to help her feel safe enough to express what is on her mind.  I want someone to hear why SHE uses the coping she does.  I don’t want doctors to guess and assume.  I don’t want them to misdiagnose her as well as mis-gendering her.

She deserves to be heard.  I don’t want her to be writing a post like this in 20 years.

Kids will say what they think adults want to hear.  They may do it consciously, or unconsciously or for their own reasons.  They do it to please, to stay safe, to feel a sense of control and many other reasons.  It takes a special type of doctor or counselor to help a child feel safe enough to tell their truth.   Because after enough time hiding, even she will be confused about what her truth is.

Mental health care for children should be free.  The practitioners should be trauma informed.  There should be enough funding that kids can access the care they need without lengthy wait lists.  There should not be a two tiered system where those who can pay can access things those in poverty cannot.  Poverty is a risk factor as it is, without it also limiting access to care.  Ideally there should be a system that is easier to navigate, where parents don’t feel they are fighting and advocating to the point of exhaustion.

Mental health care is a right, not a privilege.

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Photo: https://makingmomentsmeaningful.blog/2017/04/13/trauma-informed-care-values-youth-worker-values/

You are fine…until you aren’t. Life with PTSD.

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Today was a rough PTSD day.  Sometimes that’s the way it is with PTSD, you are fine, fine, fine…until you aren’t.  And then you real aren’t!  Nights like this I love my medication so hard.  Nights like this I don’t even consider the choice of going off psychiatric medication.  Nights like this I know that I’ve been staying up too late, not listening to my body, pushing myself further than I can reasonably go, ignoring early warning signs and just generally not trusting my own inner wisdom about what I can handle.

I dropped the kids off with their Dad this morning.  That’s always difficult.  It always lowers my capacity and PTSD coping bar by easily 50% by 9AM.

I had a difficult phone call at work.  Had to support someone around a type of abuse experience that I find triggering.  I dealt with it well, but it lowered my capacity bar by another chunk.

I met a friend for coffee this evening.  There was a traffic mess and the person was late.  While I was waiting, a car with a souped up muffler purposefully back fired it, reving the engine suddenly right in front of me.  I was looking at my phone and the loud noise and vibration startled me a LOT.  Before my heart stopped racing, the car back fired again.  I jumped again.  I almost burst into tears.  My PTSD coping bar was now at 0-5%.

This level of startle response is NOT a warning sign of PTSD issues for me, it’s one of the clear signs that I’ve been ignoring warning signals for a while.  When I feel like crying after being startled in an otherwise safe situation, PTSD is on the scene in a major way.  It’s time to get safe, do some grounding, probably get home and away from crowds.

But I didn’t listen.  I had plans to see a show later and I knew it was no longer the right choice.  The sign said there were “loud noises and flashing lights.”  The self aware voice inside me said “Not tonight.  This isn’t going to work tonight”  but I ignored it.  I pushed myself.  I tried to be “normal.” I tried to have a full PTSD tank, when it was really running on fumes.

The person I was meeting there was in a different space, relaxed and ready to enjoy the show.

I needed some help to get grounded and attempt the experience.

I didn’t get it.

I was already inside the show.  There were strobe type flashing lights which I know can trigger migraines for me.  My anxiety got worse.  I started to feel trapped and afraid.  I didn’t know what to expect and my anxiety was escalating.  I knew a panic attack was coming.  Generally, there’s a tiny bit of warning before it goes to 100km panic.  I have a few moments where I’m thinking clearly enough to know I need to exit.  I need to get outside NOW.  I need to be outside 5 minutes ago.

I can feel my chest tighten.  My breathing is coming faster.  I can feel the panic rising and rising like a tsunami wave of fear.  I start to walk as fast as I can without running.  I don’t know how to get out.  I just keep walking forward, sliding past people.   Mentally I know that if the tears start before I get outside then I’ll need help to get out.  I don’t want to ask a stranger for help.  I don’t want to slow down.  I know I need to get outside NOW.  My chest is painful, the tears are in my eyes.  The dizziness is starting. I feel like it’s taking forever to find the door in the darkness.  I feel embarrassed.  I feel ashamed.  I feel afraid.

My hands are on the door, I can see the outside and then I’m out.

I’m hyperventilating now.  Walking as fast as I can.  Crying and breathing in choked breaths.  So dizzy.  I want to slow down, catch my breath, but my feet keep going forward.  I’m downtown, in the dark, alone.  I pick up my phone and dial a friend.  He picks up.  I’m sobbing now, into the phone not able to speak.   He’s asking me what’s wrong.  I’m still walking, trying to catch my breath, manage to blurt out “I’m having a panic attack!”   He knows I’ll be okay, I’m not in physical danger, just emotional.  He speaks in a soothing voice, encouraging me to breathe, until the tears subside enough for me to speak.  I’m gradually slowing my breathing now.  It’s taking a focused effort, but I’m doing it. My chest hurts so much it feels like it might explode or collapse or both.

I walk around for 20 minutes before I’m calm enough to drive home.  The panic subsides but I know it’s only a tiny distance away.  I’m not sure if it will stay away, or return, out of control, taking me back down into tears.

I get home safely.  Take my pills as soon as I’m in the door.  I know that within 45 minutes I’ll feel calmer, so I start typing this as I wait.

I’ve noticed that abelism towards mental illness looks like this:

Folks can understand the triggers I have which are directly linked to the violence.  They understand how to be careful with sex.  They understand why I can’t fall asleep unless I’m alone.  They understand aspects of PTSD.  But they don’t REALLY understand.   A lot of people don’t understand that any situation where I don’t know what is happening, feel out of control, feel a sense of danger or feel that my environment is too unpredictable can be a trigger and can remind me of the feelings of being abused.

They don’t understand that in the moments when a panic attack is happening, the danger is real to me.  Logic doesn’t stop the fear.  Intellectual reasoning doesn’t stop the fear.  Being impatient with the person doesn’t stop the fear. The only way to stop the fear is to be believed and validated and gently helped through grounding techniques like breathing (or whatever the person finds helpful).  Or when it’s really bad, just holding space for the person until the panic attack ends.

In those moments of panic, telling someone to “just calm down” is like telling a person who uses a wheel chair to “just walk.”  In those moments of panic, PTSD is a disability.  It’s a real physical and physiological reaction based on experienced trauma that has changed a person’s brain.  Just as a wheel chair can help some folks with physical limitations get around,  grounding skills can be a vehicle to help someone with PTSD get around.  Without these skills and coping techniques many things just aren’t accessible or possible.

Someone having a panic attack or flashbacks isn’t doing it on purpose.  They aren’t misbehaving.  They aren’t lazy or controlling or seeking attention.  Their brain is literally misfiring.  The person is experiencing a safe situation as an extremely dangerous one.  If the panic attack and flashbacks are happening at the same time, the person might not be fully present in the moment, they might be in the past or mentally re-experiencing the time of the original trauma or abuse.

A lot of the time PTSD is an invisible disability.   A lot of the time when I tell people I’m not okay or I’m struggling it’s not visible on the outside.

Panic attacks can be visible or invisible.  For me the scariest ones are the visible ones, where I know I’m acting erratically, because then I feel shame AND panic.  These scary ones are most likely to happen when I’ve missed too much sleep and when I’ve been ignoring early warning signs and pushed myself too far.

Another thing about panic attacks and flashbacks is that when you have them, you start to be afraid of having them again.  I’ve learned to live with flashbacks and anxiety, but when I have severe panic attacks with flashbacks the physiological hyper arousal can take 5-7 days to fully diminish.

If someone you know experiences flashbacks or panic attacks, a compassionate response can be extremely beneficial.  I know it’s hard to be patient all the time.  Nobody is perfect, but your response in these moments of high anxiety can make all the difference.  Even if it doesn’t fully relieve the anxiety, it can reduce the guilt and shame and fears of rejection.  Some people with PTSD, myself included, have a deeply held internal belief that they are freaks or crazy.  Treating someone compassionately can help counteract this negative internal PTSD dialogue.

I’m going to bed.  Hopefully I can sleep this off.

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Internalized Stigma.

 

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Stigma causes me to make terrible choices.  Internalized stigma is dangerous to my health.  This is what I learned over the past few weeks.

Why do I feel so many complicated feelings about taking an anti-psychotic medication, but completely different feelings about taking arthritis medication?  The answer is internalized stigma.

Mental health stigma has taught me to be ashamed that I take psychiatric medication.  Internalized stigma causes me to think that I shouldn’t take the medication, that I should try to stop taking it as soon as possible, that I’m weak and somehow not good enough because I need medication to stay functional.  Basically, stigma lies.

Recently I started an alternative treatment which was helping me to sleep.  Because I was able to fall asleep, I decided to reduce my anti-psychotic medication.  I don’t need this!  I can function without it!  I’ll be fine as long as I’m still sleeping!  I feel okay!  What could go wrong?

As it turns out, a lot could go wrong.

Within a week of reducing my prescription medication, I was having multiple panic attacks a day, having paranoid thoughts, thinking that I was seeing my ex everywhere, afraid to leave the house and almost impulsively quit my job!

I was physically sick, dealing with a lot of triggers and somehow I thought it was going to be absolutely fine to reduce my psych meds!

I’m going to blame this on stigma.

I’m also going to blame stigma for how long it took me to realize that the change in medication was directly linked to my crisis state.

I mentioned it to my psychiatrist over the phone.  We talk very infrequently since I’ve been stable for the past few  years.  He told me to take the medication.  He told me that I have so much going on and so much stress that I don’t need to justify to anyone that I need the medication.  He said, just take it.  Just take it and don’t worry about it.

I thought about it and I realized he was right.  Why was I fighting so hard to reduce the dose of a medication that wasn’t causing me terrible side effects and, in fact, was reducing some of the most unpleasant PTSD symptoms (panic, paranoia, seeing things as a result of flashbacks)?  Why was  I judging myself so harshly?  Why was it more important to reduce the medication and not be “dependent” than it was to keep my job?

The answer was that it wasn’t more important.  That I didn’t need to judge myself.  That I needed the medication to keep the symptoms at bay.  Yes, the anti-psychotic medication (as it’s name implies) was ACTUALLY keeping me functional and not on the edge of psychosis!

I started on the higher dose that night.  Within 2 days I was back at work, within 4 days the panic attacks were reduced and almost back to “normal” levels.  Within a week, I’m feeling more hopeful and less terrified.

These pills help me.

Yes, I’ve had horrific experiences with psychiatry and psychiatric medications.  Yes, some of these drugs have made me worse and almost killed me.  Yes, there is a social stigma associated with anti-psychotic drugs.

But I’m going to work on not internalizing this stigma.  I’m going to work on accepting what is.  Accepting my current limitations.  Accepting that PTSD is a brain injury and it’s logical to take medication if it helps balance things out.

So next time I start talking about decreasing my medication, please remind me to re-read this post.  Please remind me that my health is more important than stigma.  That I’d rather be functioning and medicated, than in crisis and able to say that I don’t take any medication!  Remind me that going off my medication is NOT a good idea right now.  And maybe be gentle with yourself too…do what you need for your recovery.  Do what you need and don’t let judgment (by self or others) get in your way.  You are the expert in  your own healing.  Trust that.

 

Restraint

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In the summer of 2001, I overdosed multiple times.  Some of these stories are described in other blog posts.  After the last of that series of suicide attempts, my psychiatrist put me on a Form (sectioned me, 72 hour hold).  He refused to release me from the hospital unless my parents came to collect me.   I remember my father driving down to pick me up.  I don’t really remember being released, but I ended up back home at my parents house, many hours away in another city.   The past few months felt like a bad dream.

I remember my parents had hidden all the pills in a bag in their bedroom closet.  I remember that there wasn’t a lot of trust, and for good reason.  I tried to relax, but the thoughts of self harm were propelling me forward.  I was caught in a vicious cycle, medication induced self destruction.  I would feel unsafe, hurt myself, go to the hospital seeking safety…then after a few days panic, feel trapped and beg to be released.  It went on over and over.  I always wanted to be where I wasn’t, I was chasing the feeling of safety, of quiet in my mind, of escape.

I remember walking up to the plaza by my parents house.  I bought an exacto knife at the dollar store and sneaked it into the house.  I was always buying, hiding, and throwing away tools during those years.  I often hide them in various places for safe keeping.  Intellectually I knew that having them in the house was the opposite of safe, but somehow their presence simultaneously calmed and panicked me.   It’s rare, even today that I don’t have something hidden.  Even though I don’t use the tools, I sometimes feel compelled to buy and keep them.   Sometimes I’ve called friends and asked them to help me throw them out.  I’ve handed them over to therapists and doctors.  I’ve hidden them and felt ashamed.  Even writing this brings up a feeling of shame inside me.  This is the power of addiction, the constant push and pull between the promise of safety and the threat of disaster and destruction.  Back then, I thought I was in control.  I thought the cutting kept me in control, but in reality the urges controlled me completely.

I had the knife at my parents house, I cut myself with it.  Deeply, but not deep enough to require medical attention.  I told my parents and asked them to take me to the hospital.  I told them I felt suicidal and I wanted help to control the urges.  I remember sitting in the ER waiting room, in a different city.

I don’t remember everything that happened.  I remember talking to a Dr, I was sitting on a stretcher, it wasn’t a special psychiatric emergency, just a regular bed.   The doctor agreed to admit me.  Then nurses came and gave me a gown, they took my clothes and items and put them into a white bag with a plastic drawstring labelled “patient belongings.”  This was different, the anxiety began, “why are they taking my things?”  Apparently this was the protocol at this hospital.

I was taken up to the 4th floor, to the Mental Health Unit.  It was a different layout and different style that the hospital I’d been in only a few days before.  It seemed larger and was laid out more like a large rectangle, rather than a long straight line.   I was shown to my room.   Outside the room was a cupboard and the nurse locked my things in there.   I was allowed to keep my teddy bear, but not my clothes.  In this hospital there were 2 beds to a room and each room had it’s own bathroom with a toilet and shower.

I stayed in the hospital for a few days.  It was the last week of June.  A few friends came to visit me.  I was given my clothes back and allowed to leave the hospital on passes.   During one of the passes I went to visit the psychologist who had treated me as a teenager.   To be honest the appointment was not helpful.  I don’t think she had a good understanding of me.  She didn’t understand why I was sick (because I’d been abused) and she didn’t understand why I was cutting myself and suicidal (because of the abuse and the medication cocktail).  I felt that she shamed me and threatened me to stop my acting out.  I don’t really remember exactly what was said.  I only remember feeling desperate when I left.  I think my parents dropped me back at the hospital.  I was in the lobby of the hospital, where there was a pharmacy and I considered buying a giant bottle of the medicine I had been told would kill me if I overdosed again.  I felt hopeless.

Somehow I managed to go back upstairs to the ward without incident.  I remember a few days later I wanted to leave, as was my usual pattern.  It was the weekend, I believe it was July 1 and I wanted to go home to see the fireworks.   I did as I would have in the other hospital, starting convincing them I was okay.  But somehow it backfired.  They didn’t believe me and they said I couldn’t leave until my doctor returned the next day.  I started panicking and becoming angry.   They told me they were holding me involuntarily because they thought I would just leave.  I was crying and banging my head.  I went into the washroom in my room, took off my earring and scratched my skin with the sharp end.  It wasn’t even enough to draw blood, just to cause pain and leave angry looking scratches on my body.   I remember being at the nursing station.  I was given a cup with liquid medication inside.  I was told it was Nozinan, a medication I’d used for panic before.  I drank it and soon after I realized something was wrong.  I became extremely drugged and when I asked the nurse had given me 5 times my usual dose.  They took away my clothing again and gave me a hospital gown.

Before I fell asleep or settled into my bed I realized what had happened.

I’d been chemically restrained.

They didn’t want to deal with my acting out and so they drugged me.

I felt betrayed, I felt scared.  I felt like I couldn’t trust anyone and I felt like my life was out of control.

The next day my doctor returned and agreed to release me.  The only useful part of that hospital admission was the doctor switched my medication to one that I still take today.  One of the few I’ve found over almost 20 years that actually makes me more, rather than less, sane.   For that I was thankful.

I soon went back to my home.  The cycle continued.  Looking back I realize an important lesson.  It’s not possible to keep someone else safe.  If someone is determined to harm themselves they will find a way.  Short of restraining someone and drugging them, it’s impossible.  The person has to want to help themselves, and they have to find both a purpose for living and a direction to move toward.  A goal, a passion, a reason to fight.  This is unique and can’t be forced or given to someone.  Believing in myself happened over time.  The psychiatric system is a crisis management system and nothing more.  The true help I’ve received over the years has come from other places entirely.