psychiatry

Why are psychiatrists so ignorant about eating disorders?

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I recently accompanied a friend to an intake appointment at our local eating disorder treatment centre.  The program operates out of a psychiatry program at a major hospital in our city.  It’s a medium sized city, and a fairly well known treatment program which is publicly funded and free to access.

I was completely disgusted by a good portion of what the Dr said.   Sadly, many of the things he said were things I have personally heard from other doctors.   I found it pretty triggering and it wasn’t even my appointment.

Let me share a few thoughts about what NOT to say to someone in recovery from an eating disorder (especially if you are a Dr who is supposed to be an expert!):

  1. Do NOT ask people about their history with traumatic events and then proceed to tell them that their abuse is connected to their eating disorder, but that your eating disorder program does not treat trauma.   This makes absolutely NO sense.  If aren’t willing to help someone address the roots of their coping techniques, don’t bother asking intensely personal information.  It comes across as invasive, asking questions for the sake of personal curiosity rather than to actually help someone.

Instead:  All eating disorder programs and specialists should be willing to help patients cope with the traumatic events they have survived.  If they hadn’t experienced those traumas they likely wouldn’t have turned to eating disordered ways of coping in the first place!  You don’t have to be a trauma expert, you just need to be trauma informed.  Validate!  Believe people!  Let them talk about the links between their traumas and their eating disordered behaviours.   I can almost guarantee that nobody will achieve lasting recovery without addressing the root causes of their problematic coping techniques.  Conversely, do not refuse to allow people with eating disorders to access PTSD services.  Do not forbid patients from discussing addictions either.

People don’t exist in boxes.  Someone often copes with PTSD, eating disorder AND addiction.  They shouldn’t be forced to lie about some things to access services for other related issues.   Services NEED to be intersectional or they are borderline useless and can further stigmatize vulnerable people.

2.  Do NOT shame people about their weight, body shape or the foods they eat.  People of ALL shapes, sizes, genders, races and socioeconomic statuses can suffer with eating disorders.  Do NOT promote restrictive eating by underestimating what a healthy amount of food is.  Do NOT set goal weights so low that someone will still be underweight when they finish treatment. Conversely do NOT assume that everyone who has a BMI over 25 is unhealthy.  Fat people can be healthy.   Encouraging someone who is fat to drastically restrict causes shame and further disordered eating.  All bodies look different, people can be healthy at different sizes.  The goal should be to reduce body shame and increase normalized eating.  This will NOT look identical for each person in recovery.  Do NOT place moral values on food such as labeling certain things as “junk” and “unsafe” or off limits.  Believe me, the person with an eating disorder has enough of these nasty thoughts in their head already.   This attitude needs to start with children from a very young age, where they can be taught that food is not something that makes them good or bad.  Our value as humans is not correlated in any way with the food choices we make.  All people have inherent worth or value, no matter their body shape, size or food choices.

Instead:  Promote body positivity within eating disorder treatment.  Do not assume that all recovered bodies will be a certain size.  Encourage people to gradually learn to return to intuitive eating, and trusting their bodies.   Explain that some people in recovery from restricting eating disorders may be extremely hungry while they restore their weight.  This is normal.   It’s okay to eat slightly more than your meal plan if you are genuinely hungry.   Focusing only on BMI, weight and portion sizes can turn into another type of obsessive compulsive eating behaviour.   Teach people that normalized eating can vary from day to day and that is okay.   You aren’t a bad person or shameful because you ate 3 cookies instead of 2.  You aren’t broken or weird if you are still hungry after a 1 cup serving of cereal.  Meal plans are important in early recovery, but they are NOT the be all and end all of treatment.     Don’t treat people who are thin as morally superior to people who are overweight.  Ideally, don’t make comments on people’s bodies at all.

3. Do NOT assume you can tell whether or not someone has an eating disorder based on their appearance.  If someone is struggling with disordered eating symptoms, they deserve care, help and compassion.  It makes NO sense to only provide services to the very sickest people who are basically on the verge of death.  By this point the health consequences can be severe and the behaviours are SO entrenched it can be extremely difficult to recover.  As with most illnesses and mental illnesses early intervention and prevention are KEY.   Providing services based on how medically unstable someone is only encourages people to compete to see who is the sickest.  It makes people who have larger bodies feel they don’t deserve help or aren’t sick enough to MATTER.  It perpetuates the stereotype that only young, white, rich VERY thin women can have eating disorders.  An eating disorder is a serious mental and physical illness and ALL people who suffer, regardless of race, gender, size etc deserve treatment.

Instead:  Stop using BMI alone as a measure of health.  The newest version of the DSM has removed BMI criteria from the anorexia criteria.  Doctors need to follow suit.  Even if someone is at a BMI of 19.5 or 20, or even higher, they can still be struggling with anorexia. Being weight restored or reaching a minimum BMI of 18.5 is NOT the only indicator of recovery.   Ideally body positivity should be encouraged and fostered at all stages of the recovery process.  Governments need to increase funding for eating disorder treatment to make it more readily accessible to folks who are at risk or at the early stages of illness.   Fight fatphobia and discrimination based on weight (and class) when you see it happening around you.

4. Do NOT make negative comments about food at ALL.  I can’t even count the number of times I’ve heard people say things like “I’m so bad for eating this cake”  or even “I feel so guilty for eating a sandwich instead of a salad.”   Don’t promote fad diets.  Don’t promote cutting out whole food categories. Don’t promote the idea of “clean” eating as morally superior.  Don’t imply that eating a salad is virtuous and eating cake is dirty.  Just stop.  PLEASE.  People around you are listening.  Impressionable people. Young kids whose opinions about food are just forming.   Friends and family members who may be struggling with eating disorders themselves.   This may be controversial, but unless you have a food allergy, there is NO need to obsessively eliminate particular foods from your diet.  Everyone has preferences, but that is NOT the same as conferring MORAL value on food.

Instead:  Remember that food can serve many purposes including enjoyment, nourishment, connection (sharing a meal with friends and family), ritual, celebration etc.  but food’s purpose is NOT to cause shame and guilt.  Be vigilant about situations when food is given a moral value (good or bad, clean or dirty).  If you feel confident, let people around you know that judgmental comments about food are not welcome and can be triggering for those in eating disorder recovery and those who are predisposed to developing eating disorders.

We all deserve to have a positive relationship with our bodies and the food we eat.

13 years ago…my last admission at South Street

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Photo credit: http://www.lhsc.on.ca

For me, PTSD is extremely linked to anniversaries of dates.  January into February is a difficult time, with the memories of my last extended hospital stay in 2005 and my family law trial in 2016.  I often have flashbacks, memories and symptoms, and then notice the date and realize what is triggering them.

My last admission to South Street was in early January 2005.  I was there for about 5 weeks, my longest admission at that facility.  I was transferred in early February to the Regional Mental Health Care facility, the former London Psychiatric Hospital, where I stayed until sometime in March.  Since then, I’ve largely been free from in-patient admissions.

In my mind, I can walk through the buildings at South Street, especially the main building.  The large stone steps which led to the main entrance.  The single stall washroom off the lobby where I cut myself on a number of occasions, with sharps I brought back inside from walks.   The smell of institutional brown paper towel, and the cheap, strong soap found in hospitals everywhere still brings me back to South Street.  The smell of adhesive first aid tape and band aids, bring back the rusty smell of blood harden on towels during long emergency room waits.

Past the lobby was a small gift shop on the right side of the hall.  I would go down there to browse sometimes or to buy a magazine.   Just past the shop was a cafeteria.  It was more of a snack bar, I suppose they had meals there, but at that time I rarely ate more than a muffin or rice krispie square.  Being in the hospital was an excuse for Ana to get away with restricting more, when nobody was watching me eat or expecting me to do so.  I remember walking through the line style cafeteria.  I’m not sure what I bought, maybe cookies.   A little further, past the first set of elevators was a Tim Hortons kiosk.  It was small and didn’t carry a full selection of items.  It was open longer hours than the cafeteria, which shut at the end of the office hour work day.  I remember it being more dimly lit in the evenings.  There was a second set of elevators, the only ones which went all the way to the 7th and 8th floor: psychiatry.   If you kept walking to the rear of the building, there was a door to the “patio” which was where people went to smoke.   It was also the place where psych patients who had off unit privileges but not full privileges to leave the property, went to get fresh air.   The hallway split into a Y shape at this point.  To the left was the admitting department.  You could walk down a long hallway and exit there as well.

That last time I was admitted, I was a patient on the 7th floor.   There was an orderly who sat at a desk at the entrance to the inpatient unit, which was to the left side of the Y.  The stem of the Y had offices and the right hand side of the Y had other departments, like occupational therapy, and a patient dining room.   The hall was carpeted.   The carpet was dirty, even though it was vacuumed daily.   Patients and visitors had to sign in at the desk.   As a patient, passes off the unit were awarded in increments.  Maybe a 15 minute pass, lead to 30 minutes, led to 4 hours and then to an overnight pass.  Smokers were given 15 minute breaks at intervals throughout the day.  Visiting hours ended at 8pm and at that time the orderly went home and the door to the unit was locked.  Patients returning after 8pm had to ring a bell which alerted the nurses to let us in.  I remember coming back after an evening home, or out with my ex-husband.  The hospital was quiet, the main floor abandoned with the exception of security at the main entrance.  The elevator ride was quiet, the halls semi darkened.  It was easy to believe the building was haunted.  I would be buzzed back onto the unit, check in with the nurses to get my evening medication and then get ready for bed.

The rooms all had reinforced glass windows, many of them had metal grills covering them.  Some of them opened a tiny crack and others did not.   The hallway seemed impossibly long, with the nursing station 3/4 of the way towards the far end.  For all intents and purposes, it wasn’t all that safe.  The nurses were quite far away from most of the patient rooms.   They didn’t search us when we came back from passes.  It was quite easy to smuggle in anything.   On a different admission, I had a roommate who used cocaine and cut herself in our shared washroom. Another time, a patient who was supposed to be recovering from an eating disorder continually smuggled in laxatives which she took by the handful.   A third patient, being tube fed and struggling with bulimia would order large amounts of food and then purge.

It wasn’t exactly a safe place.

I spent a lot of time sleeping, resting and talking to other patients.  I filed out my menus and looked forward to the muffins and cereal at breakfast.   I ordered peanut butter and jam sandwiches for lunch.  The vegetarian and vegan options for dinner were largely inedible.  Sometimes I went home for dinner, sometimes I just didn’t eat.  The meals arrived at 8am, 12pm and 5pm on trays, covered with burgundy or dark blue coloured domes to keep the food hot.   There was a fridge with cheap Colt Ginger ale cans (regular and diet).   Sometimes I brought cereal from home.  I often went for a walk to the Tim Horton’s down the road where I would order caramel coffee cake and black coffee.   They don’t make that cake anymore, but you could order extra caramel sauce drizzled over it.

I coloured and read books.  I waited, sometimes what seemed like endlessly, for the doctor to arrive.  Sometimes the doctors checked in with you ever week day.   Sometimes they didn’t appear for days.  They appeared at unpredictable intervals.  Much of the time they spoke to us in our rooms, even in ward rooms with 4 beds, affording us little privacy.   If we were lucky we might get 15 minutes to talk to the Dr.    That last admission I had a very kind doctor.  He spoke to me in a private room.  It wasn’t his office, just a room for meeting with patients.  He believed me.  He talked about referring me to the mood disorders program at the RMHC.  He didn’t think I was borderline.   Sometimes there would be medical students or nursing students.  I liked them because they were allowed longer to talk to us.  It was lonely and there was little actual treatment in the hospital, aside from medication and medication adjustments.  The medical students gave each patient a physical exam within 24 hours of being admitted.  Even when I was in and out of South Street, I got the check up every time.  In reality, these 1st year medical students were just using us to practice doing physical exams.  But I didn’t mind.  I liked the attention and the chance to speak to someone.  The days were often long, and even the nurses were busy, assigned to multiple patients each shift.

Sometimes, if I was having a rough night, my nurse would bring me into a small room attached to the nursing station.  We would talk about how I was doing.  Mainly I talked about the urges I had to self harm.  Even in the hospital I generally harmed myself on an almost daily basis.   Looking back it’s hard to see exactly how I was helped by these admissions.  Once I even ended up needing stitches, while I was admitted.  I cut myself in the ground floor washroom, then went up to the 7th floor to confess.  A different medical student, maybe a psychiatry resident stitched it for me in my room.

In the sad, lonely state of mind I was in, there was something about the ritual of having my cuts sutured, that comforted me deeply.  I think it was a moment of literal relief to have something FIXED.  The inner trauma I was struggling with was coming back to the surface with frightening intensity.  I was in a new relationship that had rapidly become all consuming, emotionally and then sexually abusive.  I felt trapped.  I felt numb, depressed and hypomanic, agitated and anxious all at once.  I was in a frantic state which was triggered by SSRIs and other antidepressants.  I wasn’t thinking clearly for over 4 years.  I was afraid all the time, and yet I felt invincible in a way.  I knew only peripherally that my impulsive self harm and suicide attempts were extremely dangerous.  I both wanted to die, and felt like I was not at risk from the self harm.  I felt torn, tangled and pulled down, like I was drowning in trauma and suicidal thoughts.  I felt like a mechanical robot, and a wind up toy spinning out of control.

When I look back at myself during those 4 years, I barely recognize any aspects of my true self.  I was changed, and not in a positive way.

I was so young.  I was 20-24 years old.   I felt like a child, colouring, whining for help, begging for someone to SEE me.  I didn’t feel truly SEEN by anyone at that time.  I think I’d felt invisible and misunderstood for so long, that I actually was disappearing, even to myself.  I felt like I’d aged decades in a few short months.  I felt like a child trapped in the body of an older person.   My health was poor, due to medication side effects, self harm, self starvation and lack of structure and routine.  I became more and more socially isolated.  I lost connection with the “normal” world and I became a full time psych patient.  I filled out and inhabited the role of a sick person.  So much so that I no longer realized I was playing a role.  It became all I knew of ME.  I lost myself.   I lost myself in more ways that I can express in words.  I wanted to be rescued.  With all my heart I wanted to be rescued, but I learned to carefully shut people out.  I was also being isolated by my abusive partner.

That last winter in South Street, I was so suicidal I couldn’t leave the hospital alone.  I was perpetually compelled by thoughts of throwing myself in front of traffic on the busy road near the hospital.  I didn’t trust myself to walk anymore.  I knew all the train tracks that criss crossed the  neighbourhood, and all the shops which sold sharps I could use to harm myself.  I was a dead person walking.  I was more than half dead, I had more than one foot out the door of life.  I had 95% given up.

But somehow that last doctor who admitted me, he didn’t see my case as hopeless.  He didn’t see me as someone who was just “trying to get attention” or “manipulate the system”   I think he realized that it was possible the medication was making me worse.  I think he realized, and actually believed me that my next suicide attempt would be a completion.  He quietly talked to me, and quietly sent the referral to the specialist.  I didn’t have much hope, but I sensed that things were different.  Instead of lying to get myself discharged, I stayed there until the bed became available on the mood disorder unit.

5 weeks later, I was off all anti-depressants and on a new mood stabilizer.  The mood disorder specialist retrieved my life from the purgatory and hell of anti-depressant side effects, including medication induced hypomania.

Less than a year later, I was pregnant with my first child.

I never had another extended hospital admission.

South Street has been demolished for years now.  I visited the site last summer to see for myself that it was gone.

But South Street haunts my memories.  The images are so vivid, but in the faded colours of a worn down, dirty building.  Those years were brightly intense simultaneously to being muted and grey.

I expect they will be with me always.  But 13 years ago, I never imagined I would even get out alive.

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/

What to do when PTSD tells you that the entire world is unsafe?

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I don’t know what to do when PTSD tells me that the entire world is  unsafe.

Trust no one.  Trust no one.  Trust no one.

Everyone will let me down.  Nobody understands me.  It’s not safe to trust.  It’s not safe to open up.  The system is broken.  Nobody believes me.

Maybe it’s me.  Maybe I’m the common link.  Maybe I’m so deeply flawed that people are better off away from me.  Maybe I deserved to be abused.  Maybe I’m the real abuser.  Maybe I’m broken and selfish.  Maybe I am controlling.  Maybe I am incapable of loving someone.

PTSD lies a lot.

PTSD makes me push people away over tiny mistakes.  PTSD makes me feel like a small vulnerable child, when someone says one harsh word.  PTSD makes me freeze in a conflict or do anything to get out of it, even if that course of action doesn’t make long term sense.

PTSD at its root tells me that the world is unsafe.  PTSD tells me that I’m unsafe and that I’ll never be safe.

It also tells me that situations are either perfectly safe or completely unsafe and dangerous.

PTSD doesn’t find a middle ground easily.

I need to get safe and grounded before the middle ground reappears.

When I’m triggered it’s all or nothing.  All the fear.  All the self criticism.  Pushing people completely away.  Feeling hopeless and that nothing has meaning.

PTSD makes me feel like trust is completely destroyed when someone makes a mistake that hurts me.  PTSD tells me that person can no longer be trusted because they will only hurt me again.  PTSD tells me that I’m safer alone.  Or that others are safer away from me.

PTSD is not a realistic judge of anything.  It doesn’t accurately assess danger.  It doesn’t accurately assess me.  It doesn’t analyze situations clearly.  It doesn’t forgive.  It doesn’t forget.  It never forgets ANYTHING that makes me feel unsafe.  And it all gets tied together in a giant clump of tangled unsafe, danger.

On the other hand, PTSD tends to forget the good times, the moments of safety.  The moments of laughter.  The moments when life has so much meaning it hurts.  It forgets the perfect moments, or tells me they are worthless because they ended.

I’m not a perfectionist.  PTSD is a perfectionist.  I’m not a control freak.  PTSD is a control freak.   I’m not a judgmental person.  PTSD is judgmental.

PTSD changes me into a person I don’t even like.

I know people have limits and boundaries and are fallible.  I know I have limits and flaws.  I know that life has good times and bad.  I know that it’s important to be grateful and see the joy in little things.

I know.

But I don’t believe.  PTSD doesn’t let me believe.  PTSD doesn’t want to risk losing the good things, so it doesn’t want to get attached to them.  PTSD is always expecting the next crisis, the next drama, the next danger, the next heart break and the next pain.  PTSD is a child cowering in the corner waiting to be hit. PTSD doesn’t let me “just calm down” or “just smile.”

I’m always waiting to be abused again.  I’m always expecting to be hurt again.

Deep down inside I’m scared that I deserve it.  That I’m not a good person.

PTSD makes me believe that I’m not a good person and that I don’t deserve happiness and health.

PTSD makes me neglect my health, because “what’s the point anyways?”

PTSD tells me that nobody believes me.

PTSD is the combined voice of all the people who have abused and hurt me over the course of my life.  PTSD isn’t me.  It’s not my voice.  It’s not random and it’s not a character flaw.   It’s the cumulative result of years of gaslighting, emotional, physical and sexual violence.  It’s the result of a broken system, systemic/institutionalized abuse which did not validate my experiences.  It’s the result of the psychiatric system, the legal system, the police, child protection and violations of trust by people in authority.

PTSD is the reason I’ve spent more than half of my life not really caring about living (at best) or actively wanting to die (at worst).

Sometimes when I’m triggered it’s not just Ana (my angry teenager) who is on the scene.  It’s a much younger child, almost pre-verbal.  All that younger part wants is to be wrapped in warm quilts and be held.   She wants her hair stroked as she cries.  She wants to be cradled and rocked and shushed.  Gently and patiently, like a parent with an infant.   That part isn’t angry like Ana,  she’s just a deep well of unmet needs.  She just wants to be safe.  This inner child has been around a lot the past few weeks.

I just want to be safe.

But I’m an adult.  And I have to take care of my needs myself now.

South Street.

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Photo credits to the London Health Sciences Centre website documenting the decommissioning and destruction of South Street Hospital.

I’ve been thinking about South Street.   It’s been completely demolished now, destroyed and decommissioned but it’s still alive in my memory.

I haven’t written many posts about being in the hospital since I started this blog almost a year ago now.  Those were first posts, the first thoughts on my mind which I wanted to share.

I think people who have never spent time on a psych ward often have a dark curiosity about what they might be like.  I find myself filled with the same morbid curiosity as I search through pictures of the abandoned South Street hospital online.  How can a place where I survived so much just be demolished?  On one hand I’m glad it is gone.  It was a horrible place!  On the other hand, I feel like it should have stood there forever as a monument to the suffering and the intensity I felt there.

What were days like as a patient at South Street?

The days varied slightly depending on which unit I was on.  There was something comforting about the meals being delivered on neatly organized trays.  In the morning you could select your choices for the following day, marking them off on a paper slip.  The selection for vegetarians was rather poor.  The food in general was awful, but they would bring me a peanut butter and jam sandwich for lunch.  I wrote in my request beside the offered choices.   In the morning there were little boxes of cereal and tiny muffins.  Breakfast was always my favourite meal.   For your first day or two, your meals are delivered directly to your room.  After that you were encouraged to eat with the other patients in a small dining room which was unlocked at meal times for this purpose. I never ate there.  I carried my tray carefully back to my room where I ate alone.  The meals arrived like clockwork at 8AM, 12PM and 5PM.  You could order ginger ale as a snack or a treat, it arrived in a paper bag with your name.   I used to order Colt diet ginger ale, but I’d use the edge of the can to hurt myself, I never drank the pop.   Dinner was the worst meal.  There were a selection of about 4 different vegan dinners that came in plastic trays, preheated.   I would peel the plastic wrap off and sample them, sometimes eating very little.   The arrival of the trays marked the passage of time through the day and the long hours after dinner stretched out, especially if you didn’t have a visitor.

Medication times were another way to tell the time.  At first my nurse would come to my room to give me the selection of pills (at one time I was taking more than 11 pills a day).  After settling in, patients reported to the nursing station at set times to receive their pills.  Each pill came in a tiny sealed plastic bag, labelled with my name and patient number (I still have it memorized!).  The nurse would check my wristband carefully against the name on the plastic bags.  Then the nurse would rip them open carefully and tip the pills out into a small paper cup or into my hand.  I would get another small cup with water and the nurse would watch me swallow the pills.  Night time medication was always greatly anticipated as it marked the end of the day and the time at which it was acceptable to go to sleep for the night.  Realistically, on high doses of anti-anxiety and anti-psychotic medication I often slept during the day as well.   Floating in between high levels of anxiety and thoughts of self harm and suicide, and drugged, sluggish, words slurred together medication induced slumber.

There were no cell phones at that time, difficult to imagine!  There was a Bell payphone at the end of the hall in the TV lounge area.  There was a black leather chair you could sit in while you were on a call.  There was another payphone halfway down the hall, at the edge between the Y and Middlesex portions of the 7th floor (older and comparatively newer parts of the wing).  Talking on the phone to friends and family members was one way to pass the time.  Some patients also sat in the TV room watching whatever was on. I rarely sat there, preferring to stay in my room or in the room of a co-patient I had befriended.

If you were upset, you could ask to speak one on one with your nurse.  There was a small room attached to the nursing station where we could sit.   Sometimes the nurses would speak to me in my room.   The psychiatrist would visit once every few days.  These visits were highly anticipated.  Sometimes I would wait around the floor for hours, figuring that my Dr might check in on me.   Visits from the psychiatrist meant changes in medication, changes in privilege levels, and often discharge from the hospital.  The doctor generally just spoke to me in my room, even when the room was shared with 1-3 other people.  The level of privacy on the psych ward was very low, unless you were lucky enough to be moved to a private room.

Private rooms were highly coveted.  On the psych ward private rooms had nothing to do with the insurance coverage you had and everything to do with privileges.   When I arrived on the 7th floor I was generally in a ward room, 4 beds separated with curtains.  I didn’t mind this as long as I had one of the two beds by the window rather than one of the two beds by the door.   Patients who just arrived on the unit were placed in the ward rooms closer to the nursing station.  Aggressive or self destructive patients were placed in these rooms.  If I stayed longer, I would often be allowed to move further down the hall, further from the nursing station and closer to the exit (both literally and symbolically).   I loved the single rooms which had their own washrooms.  All the rooms had these chain link grills over the windows, but some of them did open a crack.   There were also double rooms, some of which did not have washrooms.  There was a shared shower room.  It had space for 3 people to shower or bathe at the same time, but the showers were separated by curtains.   Rumors circulated that people had completed suicide in these shower rooms and all the patients believed them.  There was also a laundry room where longer staying patients could wash their clothes.

The best part of staying at South Street was that I was generally allowed to come and go for brief periods on my own.  Sometimes I was allowed only on hospital ground, in which case I would go down to the patio at the back of the building.  This was a place where smokers could smoke and psych patients who were not allowed to leave could get some fresh air.  I would go down there with fellow patients sometimes and it was almost like an outing.  Smokers looked forward to the scheduled times we were allowed to leave the unit.

Other times I was allowed to go for short walks around the neighbourhood.   I used to walk down to the river by the hospital.  I’d walk around the streets in the area.  Sometimes I’d walk to Tim Horton’s and buy a piece of caramel coffee cake.  There was a walking path along the river to a small waterfall.  I know we sometimes though of jumping into it.  There were ducks which could be fed if you ordered extra bread with your meal.  Sometimes I walked alone, sometimes with visitors and sometimes with other patients.   I made some friends at South Street.  A few of them I still stay in touch with today.

Ironically enough, many of the patients were allowed to basically come and go as they pleased.  At night the door was locked and you needed permission from your psychiatrist to have a pass home for the evening or overnight.  Sometimes I had accompanied passes which meant my boyfriend had to sign me in and out.  Other times he would just drop me at the front entrance.   Ironically, though I was often admitted to the hospital for self harm and suicidal thoughts or attempts, I was still allowed freedom to leave the floor unaccompanied.   In reality I could have harmed myself pretty much anytime I wanted, even when in the hospital.  Sometimes I did, but other times I didn’t.

I often wonder exactly what made the hospital safer than being at home.   I think it was the thought, or the hope, or the desperate idea that it was safer which kept bringing me back there.  I was almost hypomanic and highly impulsive about self harm while I was taking anti-depressants.  I felt unsafe, I thought I’d be safer in the hospital, admitted myself then realized I felt trapped.  I was generally a voluntary patient, so I soon discharged myself and the cycle began again.  I never really felt safe anywhere.

Sometimes the hospital was a comfort.  The routines, the quiet, the break from real life.

Sometimes the hospital was terrifying, like when one of my roommates was cutting and snorting cocaine in our shared washroom.  Leaving blood and white powder traces for me to find.   Like when a patient who dressed in black and openly worshiped Satan was restrained by multiple security guards and wheeled down the hall on a gurney screaming.   Like when an old man came up behind me in the hall and placed his hands around my neck, whispering that he would kill me.  Like the blood stains on the 7th floor carpet, from where a man had been seriously injured trying to escape.

There was  tenuous grasp on order there, and we all knew it.   Sometimes people think of the psych ward as being filled with crazy people.   But in reality, I was neither more nor less crazy than the other people there.  I wasn’t psychotic, like some of them were, but I was destructive and depressed.  Everyone was there because they weren’t safe.  Our reasons were different, but the result was the same.  We all lined up for our pills.  We all ate our meals off plastic trays.  Some of us were allowed real cutlery and others only plastic.   The lines were drawn in terms of privileges, delineating various levels of “crazy.”  But in the end we were all there together.  We were all psych patients.  I see myself as being no different from the others.

Even today, over a decade later, there is a part of me that still holds that identity.  The identity of being on a psych ward, of being hospitalized against my will.  It did change me and it did shape me.  But it no longer defines me.

 

 

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.

 

Why I sometimes miss self harm…

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<trigger warning for description of self harm>

It’s a strange thing to admit, but if I’m 100% honest with you, I still miss self harm.  As a coping mechanism it has to be considered one of the worst.  Almost my entire body is covered with permanent scars.  The scars cause me to be self conscious and feel shame.  The scars also result in social stigma, and difficulty in being taken seriously by health care providers.  They itch as they heal and sometimes they hurt.  They are constant reminders of parts of my past that I’d rather forget.

Usually when I think about self harm, what stops me is remembering two things

  1. The self harm only ever helps for a brief moment
  2. I will have to hide the wound and feel intense shame about this, as well as worry about the consequences if anyone sees the injury

This usually works, but sometimes I feel bitter and angry.   Sometimes I have thoughts like “If society didn’t consider self harm to be SO AWFUL, I could just keep doing it, because I wouldn’t feel ashamed and I wouldn’t worry about the potential negative consequences on my family.”  I get angry and I feel like my coping mechanism is being taken away from me.  I get angry and think about how some people get fall down drunk on a regular basis and society thinks this is acceptable.   Why isn’t MY coping mechanism acceptable too?  I feel like having a tantrum like a 2 year old child!  I want it and I want it NOW!  But most of the time I refrain from self harming, not just for my children, but for myself too.  It’s not a lifestyle that I want to return to.

I do want to write about some of the complex reasons I miss self harm.  Some of this might sound completely ridiculous to you.  I’m worried about being honest and just writing this down.  I’m worried about being judged for liking some aspects of this self destructive habit.

Self harm gave me something physical to take care of, and be taken care of for,  when my inner pain was un-fixable and unreachable.

Even though I experienced a lot of maltreatment and abuse in the psychiatric system and hospital emergency rooms, I sometimes miss having a physical injury that could be fixed.

There were times when I was almost addicted to the process.  The care I received after self harming was almost as important, if not more important, than the ritual itself.  The trip to the emergency room WAS part of the ritual.   To be honest, without this part of the ritual, without the serious self harm, it seems almost useless to hurt myself at all.

There was a predictable ritual to the emergency room visit.  At times, I felt safe and cared for there.  At times it felt like a pause, a break from the day to day stressors in my life, which at that time felt unbearable.   I think there was a part of me that used self harm and suicide attempts as an excuse.  Not a cry for help or attention, but a cry that said: “I can’t do this.  It’s too much.  I need a break.  I need to be cared for.  I’m not capable.  I’m afraid to fail.”

I remember some of the times I had multiple serious injuries from self harm.  It took the doctor or medical students a considerable amount of time to fix the cuts.  During that time, the doctor would often speak to me.  I had their full attention.  I was being cared for and I was being symbolically “fixed.”

There was a ritual to the process.  Triage.  Waiting room.  Exam room.  The questions.  The cleaning of the wounds.  The freezing.  The sutures.  The bandaging after.  The conversation.  The questions.  For those hours, if I was treated nicely, it was like being numb and being in another world.    A world where time was stopped, my responsibilities were paused, the outside world did not exist.    I actually FELT better afterwards, like I had been healed, but the improvement was so fleeting.  So very fleeting, that often I was injuring again only a day later.

It was as if the injury gave me an excuse to stop, validation to say “I’m not well.  I’m not coping.  I need help!”  Without the injury, without the physical reason, I struggled to ask for or to accept help.  I still do.

I’ve never really verbalized all this to anyone before.

I remember one time, I cut myself on my stomach.  It was deeper than usual, maybe deeper than I intended or realized, because I was new to injuring in that spot.  Over time I had learned to hurt myself in places I could hide.   (When I first started, I was almost hypomanic from SSRIs and I cut in visible places, places everyone could see and that were very difficult to hide.)

I went to the hospital, as I usually would, alone.  At the triage desk they examined me, discovered the wound was serious and triaged me as Emergent rather than Urgent or Less Urgent.   I was put into a wheelchair and taken back into a part of the ER I’d never seen before.  I think it was the place for seriously ill people. The lights were dimmed and the bed was actually comfortable.  I had my own room, not just a curtained area.  It was quiet and comfortable.  I didn’t have to wait very long and I remember feeling safe and calm and protected.  I felt like my health problem was considered important, legitimate and I was being cared for appropriately.  I had a female doctor and she was kind to me.  She was wearing ordinary clothes rather than scrubs or a gown.  I remember her as being fairly young.  She treated me as if I had a physical health problem, not as a mad, crazy, unworthy self harming psych patient.   I felt bad because she got blood on her clothing while she fixed my injury.   I can’t really describe exactly what happened that night.   But I felt protected and the ritual had worked, my mind was quiet.  The racing thoughts were gone.  It was silent and the room was dimmed, like the thoughts were dimmed as well.  For that time I was in another world.

I’m having a difficult week.  I’m feeling overwhelmed and lonely and scared.  I’d like nothing more than to be cared for.  To be honest, the thought of that quiet, dimly lit emergency room bed is very appealing. But I don’t want to achieve this through self harm.  I don’t want to be “sick” and treated in hospital to get a break or to feel validated in resting.

I want someone to take care of me because they care about me, not because it is their job.  I want comfort because someone loves me, not because they are scared that I might harm myself.

I want to be an adult and not a misbehaving, out of control 2 year old.  This is part of what recovery means to me.  I have to use my words, not my actions to let people know that I’m not okay.

Note: the art was made in 2005

Inpatient bonds.

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20160727_214408[1]One of the bright sides of spending so much time in hospitals during my teens and early twenties is the people I met there.  Some of them became lasting friends and the bonds between us defied understanding by outsiders.

If you’ve never spent a significant amount of time as an inpatient in psychiatric wards and mental health treatment facilities you probably won’t understand.

I’ve had people close to me tell me that I “shouldn’t have so many friends with problems” or that I should “try to make healthier friends” or that I “shouldn’t talk to people who depress me.”

These comments miss the point for a number of reasons.

First of all, if my “friends with problems” aren’t worthy and I shouldn’t be friends with them, does that mean nobody should be friends with me either?  In case you hadn’t realized from reading this blog, the secret is out.  I identify as living with mental illness! I’m not exactly 100% well myself, otherwise I wouldn’t have been in the hospital in the first place!  Does this make me less of a good friend?  Does this make me a person who should be shunned and avoided?  I certainly hope not.  I would like to afford my other hospital friends the same courtesy.

Two, it’s hard for people who are mentally well, neurotypical, never struggled with severe mental illness to understand me.  Sure, I have well friends who empathize and who don’t judge me.  But the bonds and mutual understanding I’ve shared with other people who struggle with PTSD, eating disorders, depression and suicide are very strong.   It’s like I can breathe again, when I talk to a friend who I know “just gets it.”

Three, when you are living in a hospital ward, you naturally form friendships and alliances with the people you are living with.  Some of them become friends.  It happens and it helps us survive.

So please, don’t judge these special friendships.  Even when I’ve lost friends to suicide, even when I’ve been triggered by friends and had to set boundaries, even when it feels like listening to their struggles is too much to bear, I never regret them.

My dear friends who are gone.  I desperately miss that feeling of belonging I had when I talked to you, laughed with you.  MJ, there was never anything I shared about PTSD that you hadn’t breathed and experienced yourself.  I never had to explain myself, you just knew.  This blog entry’s photograph is a picture of all the cards you wrote to me during our friendship.

Who else could I share my strange experiences with?  When I told her one day, crying in the bathroom in my ex-husband’s house, that I was scared because I thought I was seeing X everywhere.  I literally thought I could see him all around the city.  Intellectually, I knew he wasn’t there, but it felt real and my heart skipped a beat each time.   She almost laughed and said, “It happens to me all the time.  I see everywhere too”  We breathed out together, suddenly this PTSD symptom was normal and okay.  We understood each other, we weren’t crazy.  I loved her for this and I know she loved me for it too.

When I was in treatment for anorexia when I was 17, I met another young woman named M.  She and I were stuck on the eating disorder for 5 weeks together, while other patients attended groups.  We were on “modified activity phase” until we gained a certain percentage of our goal weight and it took forever.  During this time we talked, bonded and sometimes sneaked around doing things we should not have.   She was painting rocks when I got there.  I asked her what I was doing and if I could help.  She told me she wanted to paint 1000 rocks so her wish would be granted.  Soon, we had an assembly line going.  We would fill our pockets with rocks on our 15 minute outside break, sometimes walking further than we should have away from the break area.   Once inside, I would paint the rocks a solid colour, then when they dried she would write “Expect a Miracle” in careful lettering on each one.  The final step was applying a clear glaze once all the paint was dry.   We painted so many rocks, I don’t remember how many we had finished when I discharged myself 3 months later.  I still have some of them in my bedroom almost 20 years later.  I’m still waiting for a miracle.   I often wonder what happened to M.  We lost contact and I still think of her often.  I wonder if her miracle came true and I wonder if she recovered.

I met my friend Lexi at a support group in my city.  It was the first place I really talked at any length about leaving my ex-husband and what was going on in the marriage.  Lexi loved to crochet and knit.  She loved her family.  I used to go to her apartment sometimes and we would chat about all sorts of things.  Sometimes we shared stories of our trauma and sometimes we joked and laughed about our future.  I was inspired to try online dating because of Lexi.   I lost her suddenly last summer, about  a year ago now.  I still miss her.

Darlene, whose story I recounted in another blog post, her anniversary was this week.  14 years ago I lost her.   I wish I’d had the chance to know her better, but I won’t ever forget her.

Some friends like my dear sister LJ, I have kept in contact with for over 12 years, through email, fb, text and phone.  She lives in a different country, but she calls me sister.  I miss her and I hope to see her again one day.  I have ever letter and card she has ever sent me. She has inspired me in many ways and her commitment to recovery and to survival is tremendous.

My friend John, he is also gone now.  But his music lives on and I have his CD which I listen to from time to time and remember his gentle courage.

I will never forget the stories of survival I heard and witnessed during my hospital stays.  I met so many survivors.  I met war veterans who were kind and brave enough to share small details of their own private hells with me.  I met residential school survivors who shared with me the abuse they endured.  I met childhood abuse survivors who overcame.  I met women who were admitted to the hospital in full psychosis, speaking in delusions and making little sense.  I saw those same women, mere days later, completely calm and rational again after taking their medication.  I met people who had lost family members in tragic circumstances.  I met people who had nearly died from multiple heart attacks due to anorexia and bulimia and some of those women have children and are well and healthy today.

These friends give me hope.  They remind me that I’m not alone.  They remind me that recovery is possible.  And the ones that have died, I will hold in a special place in my heart forever.

Inpatient bonds are something to be celebrated.