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Please Believe me!

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One of lasting impacts of experiencing abuse within the psychiatric system and oppression within the legal system, medical system, child protection system and police (mainly due to the combination of being a woman and having a psychiatric history),  is that I’m very sensitive to not being believed or not feeling believed.

Honestly, sometimes I feel like I spend the majority of my life just trying to justify my lived reality to other people.  Trying to convince professionals, friends, neighbours, family members and strangers that I am telling the truth.  It’s exhausting.

And even when people DO believe me, I have trouble trusting.  I get defensive when I even perceive that I might not be being believed, or that someone is challenging me on the facts of my own life.  Not being believed or not feeling believed are major triggers for me.  They bring me back to times in my life, during abuse, when the abusers did not believe that what they were doing was abuse.  It brings me back to times when health care professionals did not believe me about various things.  These triggers cause me to feel unsafe in the present moment.

Survivors of sexual violence spend a lot of time fighting to be believed.  Because “systems of oppression” (aka the medical, legal, police, CAS etc) exist within, and to maintain, rape culture, folks who speak out about experiencing violence are often viewed with suspicion.  There are a lot of myths out there about sexual violence and not a lot of people who see the facts.

The more marginalized a survivor is, the more likely it will be that she will face oppression within these oppressive systems.  Thus, systems which supposedly exist to serve justice are not applied equally to all folks.  Stigma based on mental health status is one form of oppression, perhaps it is a part of abelism, perhaps it is it’s own type of oppression.  But survivors who are women face the patriarchy, People of Colour and Indigenous folks face racism and colonialism, queer survivors face homophobia, trans survivors face transphobia, folks with disabilities face abelism, economically marginalized folks experience discrimation related to poverty, and some people, due to intersecting oppression, experience all of these things.

For me, the fact that there have been important times in my life where I was not believed, has impacted on my ability to feel safe in speaking my truth. I find myself constantly justifying myself and sadly sometimes even second guessing myself.

Maybe I am crazy.  Maybe I really did make things up.  Maybe I am really the abusive one.  Maybe I’m not a good parent.  Maybe I am seriously mentally ill…

The worst part of having survived emotional abuse and systemic abuse through the mental health care system is that I don’t even believe myself half the time.

I’m tired today.  I’m doing my best, but I don’t feel capable.  I’m working as hard as I can, but I feel like a failure.  But I feel vulnerable.  I feel very vulnerable.  I feel more alone than I technically am.  I had to justify myself too much this week and I let it get to me.

My advice to survivors is this:

You are the expert in your own life.  Be your own hero.  Believe yourself, you have no reason to lie. You can trust your memories.  You can trust your instincts and gut feelings, even if you have no memories.  You can trust your body. 

You don’t have to justify yourself to anyone.  No is a complete sentence.

I believe you.  I believe that this isn’t your fault.  I know that if you could do better you would do better.  Your best is enough.

Migraines.

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This will be a short post because I’ll be heading back to bed shortly.

Migraines and other chronic pain issues seem to overlap frequently with PTSD.

My migraines are genetic and heavily hormone related. I also have certain food triggers and stress is a factor, especially in the severity and duration of the migraine.

Basically for 10-14 days of the month my migraine threshold is lowered due to hormonal changes.  If during that time I also have a high amount of stress, I will be more likely to get severe migraines that last for multiple days without relief.  If I also eat certain things like caffeine, chocolate, red food dyes and artificial flavours or colours during that time…well…you get the idea.  It’s not a pretty picture.

If you have never experienced a migraine consider yourself lucky.  If you do live with migraines, you have my sympathy.

For me, migraines are much more than “just a headache.”  I get visual distortions and blurry vision in my right eye.  This makes it difficult to drive and difficult to focus.  I get a fog in my brain which makes it hard to think clearly (probably due to the severe pain).  I often get nausea and occasionally in the past even vomiting.  I become extremely sensitive to smells and the smells make me more nauseous and make the pain worse.  The worst smells are perfumes, peeling oranges, and coconut scented lotions or air freshners.  A random collection of scents, but things I can’t tolerate during a migraine.  Bright lights hurt my eyes and cause me to squint.  Loud noises and even vibrations will cause increased pain and sensory reactions.  During some migraines I also experience a lot of dizziness and sometimes shaking or general feelings of weakness.

But I don’t look sick and this happens on a regular basis so I can’t just put my life on hold, take day off or stop caring for my kids.  Sometimes I have to leave work early or ask for help with the kids, but the majority of the time I just keep on going.

I have had trouble getting treatment for my migraines for various reasons.  One of them is that because of my scars and my mental health history doctors don’t believe me.  They won’t prescribe me narcotics, even though pure codeine does help me with a severe migraine.  I’m always afraid to go to Emerg for pain relief because sometimes I will be believed and treated and other times ignored as a “drug seeker.”

The intersection between chronic pain and mental health stigma is real.  I also have a less common form of arthritis which took years to be properly diagnosed and treated because doctors blamed the pain on my depression and eating disorder.  They didn’t seem to understand that it is possible to have a physical and mental health problem simultaneously.

When my migraines are bad I know that I need to get a referral to a neurologist and explore other treatment options.  But when they are bad I have no energy to get this done.  When I’m feeling better I go into avoidance mode due to my fears of facing discrimination when seeking health care.  It’s a vicious cycle resulting in more pain because I don’t have a doctor following this.

Today I’ve spent quite a few hours lying in bed with ice on the back of my neck, the room spinning whenever I open my eyes.  It’s discouraging.  I have things I want to do, I have plans, I have work…but my body is saying NO! and I am forced to listen.

People with chronic pain aren’t lazy.  They don’t want to be sick or to need to slow down.  People with chronic pain are doing the best they can and even if their limitations are invisible they are valid.

Please don’t say “you don’t look sick” to anyone ever again.  You never know what battles people are facing (physically or mentally).  As with surviving trauma, sometimes the most helpful thing to hear about my chronic pain is “I believe you. How can I help?“

Self doubt.

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One of the side effects of surviving any type of abuse, including abuse within the psychiatric system, is self doubt.  Emotional abuse and gaslighting are particular triggers for self doubt.

I’ve been struggling with so much self doubt this week.  I felt hopeless at times. I felt I was almost back where I started 3 years ago.  I felt like I wasn’t going to be able to do my job. I felt like a shit mother.  I felt like I was letting everyone down.  I felt exhausted and depressed.  I felt like there was little meaning to my life.

I know I was triggered.  Some of these feelings were related to past trauma.  Some of them were related to life stresses.

Today, I’m feeling a little bit better.  I had a good day at work.  I met some challenges successfully.  I realized that there is no possible way to keep everyone happy all the time and that my best has to be good enough.  It’s all I’ve got!  Not everything in the world is my fault!

I realized that when I was feeling depressed I failed to take, or even consider, the advice that I give to almost all of my service users at work.  I often tell survivors that the journey to recovery and health does not go in a straight forward line.  While we are healing we move forward, backwards, side to side, up and down, but as long as we are moving we are coping and surviving.  In dark times, when all seems lost we have never lost the previous gains we made.  When we feel better we are not starting from zero.  We can never lose the progress we have made, we can only lose sight of it from time to time.  Any progress you make in your healing journey stays with you.  It’s okay to relapse, it’s okay to feel down, it’s okay to feel hopeless…but don’t give up.  Your hard work is paying off.  Recovery from trauma is not a race, and it if WERE a race it would be a marathon and not a sprint.  It’s a marathon with no clear finish line, sometimes we are beaten down with exhaustion but even if we are crawling forward at a snails pace we are heroes.

Sometimes when times are dark the best thing we can do as survivors is to self care.

Sometimes when times are dark the hardest thing to do is self care.

Let us first acknowledge that as survivors, especially as women, we have often learned various messages about self care, from our families, from our abusers and from society.  Many of those messages are negative.  If you take care of yourself you are lazy, you are wasting time, you should be productive, you need to put others first…blah blah blah!

Self care is very simple but it is not easy.  It’s is often challenging for so many reasons.

I’m want to tell you that self care is a radical act.  By caring for ourselves and putting ourselves first we are combating patriarchy and rape culture.  By believing that we deserve to be cared for, that we deserve to listen to our inner voices, that we deserve to rest, to be validated, to have fun, to laugh and to relax, we are fighting against the harmful messages that women are not worthy of self care.

In order to self care, we must first identify and tune in to what we need in any given moment.  It can be helpful to think of your basic needs first.  Have you eaten in the last 4 hours?  Are you hydrated?  Have you slept?  Do you need to  move your body or breathe some fresh air?

Are you having strong feelings?  If you are scared, maybe things that make you feel safe can be self care.  Wrapping up in a cozy blanket, holding a pet or stuffed animal, talking to a supportive friend.  If you are angry, maybe you need to assert yourself, exercise, move your large muscle groups.  If you are sad, maybe you need to cry, get comfort, talk to others.

Yes, I am giving you permission to express your feelings!  Whatever they are they are normal, healthy and important.

Let’s put ourselves first today.  Fight self doubt with self care!

Who is with me?

 

Isn’t it Ironic?

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Strangely enough, a whole group of adults, many of them health care professionals, spent years trying to figure out why I developed anorexia nervosa at the age of 16.  People had lots of different theories, but as far as I could tell the main theory of the adults was that I was suffering from existential angst.  Quite simply I was too smart for my own good and pondering too deeply about lives mysteries.  Somehow, the theory went, I was thinking too much, too hard and taking life too seriously.  My eating disorder was an expression of my perfectionism and my drive towards excellence and a result of being aware that life was essentially cruel, brutal and unfair.

It’s somewhat ironic to me.  I don’t really remember what I told the psychologists and doctors I was seeing.  I do remember learning very quickly what they WANTED me to say and I would say it.  I was very unhappy about missing school to attend counseling and I thought that if I said the magic words I would be released and declared cured.

Those doctors weren’t very smart.  Either that or I was a superbly good liar.  Since I know for a fact that I’m a terrible liar, I’m left with the conclusion that they didn’t know very much at all about the connection between trauma and eating disorders.  Sure, I had a genetic predisposition to anorexia.  Yes, I was a perfectionist and yes, I did struggle with existential angst over the tragic state of the world.  I still do on a regularly basis and it often leads to periods of depression and hopelessness.   But these reasons alone would not have caused me to get so sick that I almost died.

Ironically enough, I remember the exact moment I discovered self starvation as a coping mechanism.  I was walking down my street to my boyfriend’s house, I think we were about to take the bus to school.  I think it was possibly Fall.  I had been sick for a few days with the stomach flu.  I really wanted to go to school that day but my mother wanted me to stay home.  She said if I wasn’t well enough to eat I wasn’t well enough for school.  I remember taking a granola bar with me to appease her worries.  I walked down the street, holding the granola bar.  I felt light, empty and my mind was quiet.  I felt like I was floating down the street.  I remember loving the feeling.  It made me feel powerful and in control.  I didn’t need that granola bar! I wouldn’t eat it!  I didn’t want to lose this feeling.

From that moment forward I restricted food as a way of controlling my strong feelings. I used it as a way of controlling my body and thus attempting to control my world.  It seemed harmless enough at first, I never even gave it a second thought.  I didn’t consider myself as having an eating disorder, I didn’t think I was sick.  I just became slowly more and more numb.  I was embracing disassociation.  Eventually I became addicted to self starvation and I couldn’t stop.  It morphed into a form of obsessive compulsive disorder as well, a set of complex rules I had to follow in order to stay safe.

The adults were so confused.  I wonder if anyone actually asked me why I wasn’t eating.  Maybe they did and I don’t remember.  Maybe they did and I lied.  Maybe I told the doctors about the empty feeling.  But I think I actually just accepted what adults were telling me.  I accepted the idea of existential angst and I went with it.

After a few months I almost completely blocked out the real reason I wasn’t eating.  It was all to do with the sexually and emotionally abusive relationship I was in.  I was coping with something I did not understand, something I did not want and something I could not express to anyone.

Ironically, part of the abuse was X forcing me into social isolation.  But anorexia caused me to isolate too.  I would avoid occasions where I knew there would be food involved. I would rarely eat around anyone except my immediate family and even then I would often eat alone. I continued to isolate myself even after the abuse ended. It’s not often than we consider how many social rituals involve food.  Almost all of them do and when you can’t eat, you can’t be social.  I was so lonely.  I also felt that nobody wanted to be around me.  Because during the abuse I “neglected” my friends (ie I was not allowed to see them).  I felt my friends would not want to talk to me again after the relationship ended.  I felt embarrassed and I felt a deep shame.

Less than one year after leaving the abusive relationship with X I was seriously ill.  I had no idea how sick I was.  I was living mechanically, driven like a wind up toy.  I have some extremely vivid memories from that time, and some complete blanks in my mind.

I do remember sitting in my psychologist’s office, one winter day.  She was looking at me intently, as if she had something very serious to say.  I was sitting there, wishing I could be just about anywhere else. I remember there was a clock ticking on the wall.  The chair was uncomfortable, but then sitting in general was uncomfortable at that point, bones in direct contact with surfaces.

She looked at me and she said “You are going to die.  Not in a year, not in a month, but soon.   You have two choices, go voluntarily to Homewood to their eating disorder program or wait until you have a medical crisis and be admitted at CHEO involuntarily.”

I looked at her.  I don’t remember if I said anything.  I just remember sitting there feeling numb.  Surely she couldn’t be talking about me, I wasn’t even sick!  I knew I had been for multiple blood tests and ECGs recently, but I didn’t even consider the reason why. I was in denial so deeply.  My brain was so starved I don’t think it was working properly.  All I wanted to do was continue school and finish the year.

I must have chosen at some point, because a few weeks later I was heading to Homewood.  I had friends who had been at CHEO for eating disorders and it didn’t seem pleasant to me.  I never told my friends I was going to Homewood. I went to high school until the day before my admission. I didn’t tell anyone, I just disappeared from school one day.  I suppose my parents or my teachers must have told my friends, because I received cards and letters from them.

When I got to Homewood, I found out years later, that the staff told my parents I was too sick to attend the program.  They worried that at 85 pounds and 5’9″ I was not medically stable.  They ran a series of tests on me and after my parents begged them, I was allowed to stay.

I still did not believe I was sick!  I remember the psychiatrist for the program administered a series of diagnostic tests for eating disorders.  He showed me the results in order to “prove” to me that I was sick.  I remember a graph of my answers, the norm near the bottom, a line of average eating disorder patients above that, and my answers above that. I was apparently sick, even among a sample of sick people.

A few days after the refeeding process began, I brewed a cup of tea in the unit kitchen. I had a large Eeyore mug. I walked back down the hall carrying the large mug and suddenly realized my arm was shaking.  I had to stop, I was so weak I could barely hold a mug of tea.  And a few days before I’d been going to school, walking, living “normally.”  I think it was at that point, my arms shaking from the exertion of holding the mug that I realized something was wrong.

It’s strange to me that with all the treatment I received, nobody figured out that I had been abused.  It’s ironic, because I knew I started restricting to numb out, but along the way I became so sick that the root causes became irrelevant and all anyone wanted was for me to eat.

I one picture of myself at my low weight.  Ironically, X was the photographer and the one who mailed it to me at Homewood.  I kept it as a reminder of where I do not want to be.  Never again.  Though I have struggled with anorexia to some degree for 20 years, I never went back to that low point.  I couldn’t because I was too aware.

Ironically, at the age of 17, I almost died from anorexia by accident.

I didn’t speak about the abuse until I was 20.  Ironically, my method of coping almost killed me.

 

Dental Floss. When the truth is I miss you so…

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I met my dear friend MJ during the summer months of 2002.  We were both patients in the Post-traumatic Stress Recovery Program at Homewood Health Centre in Guelph.  We became friends very quickly, even though we were both struggling.  In so many ways she was struggling, coping with the impact of years, a lifetime really, of abuse.  We were close in age, we were both looking for hope and for something to hold on to.

I won’t write too much about MJ’s story, because it is not my own.  I will say that she was also a survivor and spent a good portion of our friendship hospitalized in various places.

MJ and I would write letters to each other, cards mostly.  Words of encouragement.  We would speak by phone, sometimes almost daily and sometimes months would go in between.  The amount of contact varied along with our health statuses at any given moment.

MJ was the person who I felt completely understood my experience of living with PTSD.  She never judged me.  She was always so grateful for our friendship.  I could tell her my strangest thoughts and she knew exactly what I was going through.  She was one of the bravest people I’ve even known.

MJ and I had an inside joke.  I don’t remember anymore who started it, but I think it was her.  We both struggled with near constant thoughts of suicide and self harm.  But we would talk about holding on and about being there for each other.  She used to say “hold on to hope, even if what you are holding onto is as thin as dental floss.”  We often talked about holding onto the dental floss, each of us holding one end and clinging to life.

I supported MJ through many hospitalizations and numerous suicide attempts.  I always knew in my heart that MJ would not be with me forever.  I almost lost her too many times to count.  We had a special connection, one that I’ve only had with a few other people in my life. I would dream about her, nightmares about things happening to her. Waking with a terrible, panicked pit in my stomach, I would know the dream was true. We were so connected I often knew something was wrong or something had happened before she told me.  I would call and find that she was in hospital.

MJ died one year ago.  She died from complications from chronic, terminal PTSD.  I was not there, I did not get to say goodbye.  For some reason I was not invited to the funeral.  I found out over a week later when her Mom answered her cell phone.  I was sitting in my car and I instantly knew.  I cried as her Mom described what happened.

MJ did not die alone.  Her family was with her and she was peaceful.  I take great comfort in this.  I said thank you hundreds of times.

But my heart aches and aches.  I can’t believe she is gone.  I feel devastated that some people don’t survive violence. There are days when I think if I pick up the phone to call her she will answer.  If I get on a plane and fly to her city, she will be there waiting for me.  I dream about her still and wake up crying when I realize she is dead.  She will always be a true survivor to me, even though she didn’t make it out alive.

I still have all the cards she ever sent to me.  I have about 25.  I keep them, along with photos of us together, under my bed.  I’ve read and re-read them, my eyes filled with tears of gratitude that these small pieces of her, her words of encouragement to me, will always be with me.

If I could have one wish, to speak to anyone, living or dead, it would be her.  Just one more time.  I wonder if anyone else will ever understand me so well.  I know I won’t ever have a friend just like her.  The bonds that are formed through shared experiences of trauma are difficult to break.  And I don’t want to break them.  As much as this hurts, I don’t regret being her friend.

I miss you MJ.  I miss you so much.  I’m still here, I’m still holding my end of the dental floss.  I’m still trying to be the Wonder Woman I know you believed I was.  Thank you for being my friend.

“Cowboy take me away
Fly this girl as high as you can
Into the wild blue
Set me free oh I pray
Closer to heaven above and
Closer to you closer to you”   -Dixie Chicks

 

Gaslighting

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“Gaslighting: a form of mental abuse in which a victim is manipulated into doubting his or her own memory, perception and sanity”  -Wikipedia

Gaslighting.  Gaslighting. Gaslighting.

It’s all I can think about these days.  It’s been 967 days since I moved out of the house I shared with my ex-husband.  2 years and almost 8 months.  I was naive back then, I actually thought that moving houses could end the gaslighting but I was wrong.  The incredible thing about gaslighting as a form of abuse is that its impacts last long after the abuse ends.  The manipulation gets inside the victim’s head.  The self doubt, which sometimes extends to an level which almost resembles paranoia, can be paralyzing.  “Maybe I am really crazy,  maybe I’m the one who is abusive,  maybe I’m the one responsible for the abuse, maybe he was right about me, maybe nobody will believe me…maybe, maybe, maybe…”

If you have ever found yourself thinking these types of thoughts within a relationship or after escaping, you may have been a victim of gaslighting.  It can happen within families of origin as well as dating relationships.  I also believe that (at least in my experience) the psychiatric, legal, police and child protection systems collude in gaslighting survivors of violence, especially woman, and especially marginalized women.  In a victim blaming, rape culture, our entire society is complicit in gaslighting survivors of violence.

My first abuser X was a gaslighter.  He manipulated me into believing that he could not live without me, that I was essential in his life and that he loved me deeply.  The thing about gaslighters is they know their victims, they know them in a way that is designed to search out weak spots, and gather information that can be used in a tailored and effective manipulation.  I am an empath, a caretaker, a caregiver, someone who thinks deeply about the well being of those around me and about the society we live in.  Empaths are particularly vulnerable to gaslighting, as the perpetrators are often narcissists. There are lots of interesting articles circulating about toxic relationships between empaths and narcissists.

I believe that X knew these things about me, things that in a healthy relationship are considered strengths, and he turned them against me as weapons.  He knew that threatening me directly would probably have little impact, so he talked about suicide in ways that strongly implied he would literally die without me.  I was 15-16 years old and I believed him completely.  I thought that I was helping him, I felt important and useful and even loved.  He would turn on the love and shower me with attention, notes, gifts and phone calls.  But when we were together he ignored my boundaries.  He didn’t seem to understand no or hesitation of any kind.  He just did what he wanted.  I began to feel like a sexual object, irrelevant and I learned skills like disassociation and distraction to minimize the impact of the sexual abuse.

Part of the gaslighting was making me believe I was helping him, and as long as I felt I was doing good I stuck around.   Part of the gaslighting was the intense shame I felt which prevented me from telling a single person I was being abused. I truly believed that if anyone knew I was sexually active I would be in trouble, I’d be labelled as a slut, my parents would be angry, his parents would judge me etc…  Looking back I realize that this intense shame was a side effect of being sexually abused and having my needs ignored and pushed past.  Instead of realizing that what was happening to me made me uncomfortable and thus, was bad, I began to think that I was inherently bad.   I believe this was also related to the messages I was getting during the sexual abuse, the mental abuse and gaslighting.

The first step is leaving the abusive situation.  But for readers who have not been abused, it’s important to realize that the survivor often takes the mental abuse with them because it has been deeply internalized.

If I need to hear over and over and over “You are not crazy,” please say it to me.

If I tell you that I feel crazy, bad, damaged and unworthy, please reassure me.

If it seems like I don’t believe your reassurance, I probably don’t, but I still need to hear it.

I don’t need you to fix me.  I need you to validate and believe me.  I need to hear consistent and safe messages and I need your patience.  I survived years of gaslighting and it may take years to undo the damage.

I’m not giving up when I say “I feel crazy.”  I’m terrified.  Truly scared that it might be true.  Even though you see me as a functioning adult individual, working, parenting, taking care of my life, a few small triggers can bring up all the feelings of the mental abuse.

I’m not saying these things to be dramatic or to get attention.  I’m looking for evidence to contradict the self doubt that years of gaslighting created in me.

The biggest gaslighting related trigger for me is not being believed or feeling like I am not believed, or even might not be believed.  Because gaslighting is designed to create self doubt and feelings of being crazy, when I feel others don’t believe my real experiences I can begin to question myself all over again.  What if I really am crazy?

Systemic and institutional abuse can be a form of gaslighting as well.  When a woman comes forward to tell her story and she is not believed, she may begin to doubt herself.  Systems are full of contradictions, double binds and no win situations.  In this way, they also create an atmosphere that is retraumatizing and crazy making.   The very systems an abused person may need to turn to in order to escape the abuse are likely to perpetuate more confusion, frustration and contradiction.

I’ve had gaslighting experiences within the psychiatric system, the health care system, the legal system, while working with the police and interacting with child protection services.  That’s a long list.

Break the cycle of abuse.  It’s just as easy as these few words:

“I believe you.  It’s not your fault.  I’m so sorry this happened to you. You are not alone and you are not crazy, you are having normal coping reactions to surviving abuse”

Repeat as often as possible, whenever self doubt arises.

It’s cheaper than psychiatric meds and has only positive side effects.

 

 

Don’t judge me. I’m coping.

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hope-hero

The most important thing to remember about survivors of sexual, emotional and physical abuse is that if we are alive chances are we are coping and that’s a good thing.

One way the psychiatric system as a whole fails survivors, especially women, is by labeling our normal coping reactions as “symptoms” of various psychiatric illnesses.  Please consider this: it was the situations I survived that were not normal, the ways I coped were normal healthy reactions.  I did what I had to do to survive and that’s okay.

Yes, you are normal!  No, this is not your fault!  I believe you.

If you turned to “disordered eating” as a way of coping with your trauma, you are normal.

If you engage in self harming behaviours as a way of coping, you are normal.

If you take drugs and alcohol as a way of coping, you are normal.

If you zone out or disassociate as a way of coping (either voluntarily or involuntarily), you are normal.

These are all examples of common coping reactions that women utilize to survive the abnormal and terrifying situation of experiencing abuse.

You did the best you could at the time to survive and that was enough.  If I had known better or had other options, I might not have used anorexia, self harm and suicide attempts to cope.  Those tools worked for me for a time, until they didn’t.  When they stopped being useful to me and started causing more harm to me than good, I became motivated to learn new methods of coping.    I don’t have borderline personality disorder, I don’t harm myself to manipulate others or to seek attention.  I do it because I am a survivor of trauma, doing what survivors do best: surviving.

If you are working towards recovery be proud of yourself.  We aren’t aiming for perfection here, because it doesn’t exist.  Your best is enough.  You are enough.

I identify with the label PTSD and my experience with it is that it is chronic and more of a disability than an illness.   Living with PTSD takes an incredible amount of energy.  If you regularly hear me say “I’m tired, I’m so tired” I’m not whining.  I am fatigued and tired almost all time, some days worse than others.  And no, taking a nap won’t help but thanks for thinking of me.

Let me explain why living with PTSD is so exhausting.  It’s an invisible illness, for the most part you can’t see my struggles, but that doesn’t mean they are not real or valid.

Facts about PTSD and why it sucks away a massive amount of my energy each and every day:

  1. Even though I might be in bed for 8 hours in a given night I’m often experiencing nightmares.  Sometimes these nightmares cause me to wake in a panic attack, unsure what is real and what was just a dream.  I sometimes wake up covered in sweat, making sounds and fighting off imaginary threats.  When I wake up I often do not feel rested and I sometimes avoid going to bed at night when the dreams have been particularly troublesome.
  2. One word:  hypervigilance.  This means my danger sensors are on high alert 24/7, 365 days a year.  I can’t “just relax.”
  3. Hyperarousal and exaggerated startle response.  Every time there is an unexpected noise, or sometimes even an unexpected movement I jump about 10 feet in the air.  This is a symptom that people around me tend to notice and comment on.  Again, I cannot control it. Reassuring me that there is no danger does not stop the response.
  4.  Depression and anxiety.  Obsessive compulsive worries.  Yes, PTSD impacts my mood.  No, I can’t just “cheer up” or “think positive.”
  5. Flashbacks and body memories.  Yes, intellectually I know it happened “a long time ago” and that I’m “safe right now” but my body and my physiology haven’t caught up. I can go from feeling perfectly fine to crying, terrified and in physical pain within seconds and the trigger can be sometimes as inconsequential as a touch, a word, a memory crossing my mind.  Intense flashbacks are accompanied by panic attacks, rapid breathing, hot and cold sweats, disorientation, confusion between past and present.  After a particularly bad one it can take up to 7 days for the residual effects to pass.  And though technically, in the present moment, nothing bad has happened to me, I often feel as though the abuse has occurred all over again.  I feel exhausted, scared and sometimes hopeless about how little control I have over the memories.
  6. Flashbacks, body memories, hypervigilance etc are not the same as day to day worries.  They are not something I spend time thinking about or worrying about, it’s easier to understand them as physiological reactions, rather than connected to specific thoughts or behaviours.   This is not an intellectual problem, so no, I can’t just “look on the bright side”
  7. PTSD is often accompanied by deep shame and sense of self as being damaged, broken or somehow faulty.  Even though you might not see me this way, and struggle to understand why my self concept is so “distorted” please hear me and believe me.  I really do feel that internalized shame as a result of being abused.  Be patient with me, I can’t just “love myself.”  It’s more complicated than that.
  8. PTSD causes actual changes in your brain.  In the military it is referred to as an operational stress INJURY or post-traumatic stress INJURY and this makes perfect sense to me.  My brain was injured by the trauma I survived.  The eating issues and self harm behaviours are symptoms of PTSD, they were the ways I reacted and coped with the initial injuries.

For those of you who do not live with PTSD, I hope this explanation of my experience makes sense.

Last night I had a new flashback, to the original abuse with X, 20 years ago.  It wasn’t a lot of fun.  It led me to think about how PTSD uses up a massive amount of spoons (google spoon theory of chronic illness for more information).

I’m trying to be compassionate with myself tonight.  My hope levels are staggeringly low.  I’m tired of life, but I won’t give up.

Tonight I’m coping.  I hope you are coping too. 

Terminal illness (psychiatric style) aka suicide

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One of the side effects of having a chronic psychiatric illness is that you spend a lot of time in hospital, treatment and therapy groups.  One of the great aspects of this is all the amazing people I’ve had a chance to meet along my journey.  Perhaps the most tragic aspect of this story is the number of friends I’ve lost, when their mental illnesses became terminal.

I think it is time to stop saying “she committed suicide” or even “she completed suicide.”  It is more accurate to say things like “she died from chronic post-traumatic stress disorder,” or “she lost her battle with anorexia and alcohol addiction,”  or bluntly “depression killed her.”

Kirsten, Irene, Pammy Jo, Darlene, Marian, Lexi, Erin, Andrea

I will say their names so they are not forgotten.  These women ultimately did not survive the psychiatric and health care systems.   They died as a result of complicated, layered physical and mental health problems and, in many cases, social barriers and challenges as well.  Sexual, physical and emotional abuse killed some of my friends, though they died ultimately long after the abuse ended.  Many mental illnesses do not just appear out of the blue (in fact they rarely do).  I struggle to even call many of these deaths suicide.  I’d like to call some of them murder by PTSD.  If these women had not survived gender based violence or abuse within the health care system they quite likely would be alive today.

Quite simply, if my friends had not been abused I would be talking to them today instead of writing this blog post.

This afternoon I attended a memorial gathering for Lexi.  She died about 9 months ago.  She was beautiful, talented, creative young woman.

I find myself flying back, years in the past to when I experienced my first loss as a result of mental illness….

I met Darlene on 8East at South Street hospital, it was within my first few months there.  Possibly the 3rd admission.  She just slightly younger than me, perhaps 19 years old at that time.  I remember her roommate was a young woman with bulimia who was being tube fed with limited success.  I can still remember their voices laughing across the hallway.  They were listening to Nelly Furtado, Turn off the Light over and over, singing along.  Their room was full of stuffed animals.

Like me, Darlene was also a frequent flyer at South Street hospital and later at the Regional Mental Health Care London (better known by us as the LPH).   London Psychiatric Hospital.

Also like me, I believe she had also been labelled with borderline personality disorder as a result of frequent overdosing and high utilization of psychiatric services.  She was also a patient of Dr. X while at South Street.

July 23, 2002 I received a call from Darlene.  She started saying goodbye to me and I was confused.  I asked her if she was going to visit her Mom and she said no.  I quickly realized she was speaking about suicide.  I talked to her for a while and asked her permission to call 911.  She agreed.  I ended the call and send the paramedics to her house.  She was taken to the ER.  I later learned that she ate a roast beef sandwich while waiting for the doctor.  I have often wondered if that was her last meal.  A dry, cold, prepackaged hospital sandwich.  The thought breaks my heart.

She called me from a pay phone the next morning and explained she had been admitted at the LPH.  She had been chemically restrained, with an injection in her thigh and put into an observation room overnight.  She was angry and was being discharged and wanted me to come to meet her.  I took the bus across town to the hospital and the two of us took a cab to her apartment.  It was the first time I’d been there.  I had to leave her because I had an appointment to attend.  Another friend of ours stopped by and kept her company for the afternoon.  She was a young woman, about 16 years old.  The two of them went to the park and swung on the swings together.

The next day I was not able to reach Darlene by phone.  Scared, I called 911 thinking I would send the police to check on her.  The operator asked her name and my own name and then I was put on hold.  I was confused and started to feel a deep sinking sick feeling in my stomach.  After a few seconds someone else came on the phone, I assume it was  a police officer but I can’t remember.

Darlene is dead.

Sometime over the course of that phone call, or when the police officers came to my house I found out that after E went home, Darlene had returned to the Emergency Room at South Street asking for help.  She was turned away rather than being admitted.  Having had similar experiences myself, I can only imagine the staff were frustrated that she was back again so quickly.

Darlene walked a few short blocks away from the hospital and in front of a train around 8pm July 24.  She died alone, less than an hour after walking out the ER doors.  Outside of hospital staff, my friend and I were the last two people to see her alive.

This is what terminal psychiatric illness looks like.

This is the result of labeling someone borderline and attention seeking.

She was only a few days away from turning 21.  The system failed her.

After speaking with the police I drove to E’s house.  We went for a walk in the park by her house.  I had to tell this young woman, my friend, that her friend Darlene was gone.  It was one of the most difficult things I’ve ever had to do.  We sat on a rock in the park, crying and hugging each other.  I remember that a balloon floated by in the shape of Bert from Sesame Street.  It was a sunny day.

At her funeral, still in shock, we cried for our friend.  It was a strange service, her grey velvet casket sitting at the front of the room. There was no eulogy, no family members spoke.  The priest that spoke was a stranger and gave what sounded like a stock, religious speech.  He kept saying her name and it didn’t make sense to me. It was impossible to believe it was our friend who had died.  At the end of the service they played Angel by Sarah McLaughlan.  That song still makes me cry

I hope all of these women have found some comfort.  I certainly miss them.

When mental illness ends in suicide, a light goes out.  Suicide takes some of our brightest lights.  Grieving loss related to mental illness is complex and often not acknowledged openly by society.  I will write more about my own struggles with suicidal ideation, gestures and attempts.  I will write more about my friends.  The secrecy and stigma surrounding suicide needs to be broken in order to save lives.

My dear friends…

“In the arms of the angel, may you find some comfort here”

 

 

 

Follow me, follow me, follow me, down, down down…

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I began taking a psychiatric drug cocktail around February 2001.  At that time I was mainly scratching my skin, enough to bleed, but superficial marks.  I was having almost daily panic attacks, insomnia and nightmares.  The idea was that the drug cocktail would help all these symptoms.

On my 3rd admission to South Street 7th floor, I met with Dr. X.   We were sitting in my hospital room.  I had a bed by the window and this was a ward room with four beds separated by curtains.   He sat on the chair that was provided for visitors and scrawled some words on a scrap piece of paper.

Major depression

Anorexia nervosa (in partial remission)

Post-traumatic stress disorder (mild)

Borderline Personality Disorder.

This moment changed the direction of the rest of my life.   Even today, at 35 years old the impacts haunt me.   Dr. X explained each of my diagnosis to me one by one.   When I learned about PTSD I felt a weight lift.  So many things suddenly made sense, why I startled so easily, the nightmares and intrusive thoughts.  PTSD was a psychiatric label, but for me it was a useful one.  It made me feel less alone, less crazy to know there was a word for what I had been experiencing since I was 15 years old.

The issue was the last line in his list.  Borderline Personality Disorder.  What did that mean?  How could my personality be disordered?  Remember that I had only just begun to recover and process memories of sexual abuse and that was the immediate trigger of my instability.   Dr. X explained that because of my self harming behaviour this was the diagnosis that fit best for me.   Over the years I would learn many things about borderline personality disorder and how it is used as a label to marginalize women survivors of violence and abuse.  But in the next few years all I learned was that as soon as a doctor in the hospital saw that diagnosis I would get treated differently, with less compassion, less humanity and less kindness.  Quite simply the hospital staff began to give up on me.

A terrible paradox began to occur.  The more I felt that the hospital staff and Dr. X did not believe and validate me, the more I acted out.  This was not a conscious decision, but I soon learned that without harming myself I would not get hospital care, and after a few more months, I began to be turned away from the Emergency Room on a regular basis, told there were no beds, that hospital stays did not benefit people who were borderline.

Something else was happening during this time period.  The toxic soup of psychotropic drugs were beginning to poison me.  I was 20 years old, still a young person.   SSRI anti-depressant medications can be very dangerous for some young people.  They can trigger impulsive self harm and even suicidal thoughts and actions.  They can create an almost hypomanic like state in someone who is not bipolar.   This is what happened to me.  But all the while I kept believing “Drs don’t give you medicine to make you sick”

Anti-anxiety and anti-psychotic medications slowed me down.  I found myself sleeping more than I wanted to, napping during the day, living in a fog.  I also became more intense and more impulsive with my self harming behaviours which escalated extremely quickly between February and April 2000.  Soon I was harming myself daily, sometimes multiple times a day.  My arms looked like a mess of scars, cuts and scrapes.

In April 2000, I bought an exacto knife and for the first time I cut deeply.  Down the rabbit hole, down, down, down…I went to the Emergency Room by myself and received 9 stitches by a medical student.  When the resident came back to check his work she told him the sutures were done incorrectly.  I waited, but she did not offer to fix it.   The first time left the worst scar,  6 years later it still hurt me so much I had plastic surgery to repair the scar tissue.   I imagine that if this wound had not been self inflicted, the resident would have corrected it and been concerned about the potential scar.

One week later, walking back from University I became consumed with thoughts about ending my life.  These thoughts had become an almost constant companion, but that day there was an impulsiveness that was new.  Almost without thinking I overdosed in my apartment.  Shortly after I told my boyfriend who drove me to the hospital.

I don’t remember very much about what happened after the car ride.  I do remember drinking activated charcoal.  I still have nightmares about this and I still have trouble drinking or eating things with a chalky texture.  It was black and I was drinking it from a bottle with a straw.  I was confused and kept asking why I was drinking it.

The doctors discharged me home after a few hours.  I vaguely remember the car ride, I remember throwing up in the parking lot of my apartment building and many more times that night.  I don’t remember going to bed or much of that evening.

It confused me that I was sent home.  Surely a disoriented, drugged young woman who had just tried to end her life was not the person who should be walking out of the hospital.  I must have told them I felt better, but I can’t imagine their thought process in discharging me so quickly.

This was not the last time I tried something like this.  Looking back from the perspective of a wiser adult I know that:

a) SSRIs or anti-depressants of any kind make me extremely ill/hypomanic, suicidal, impulsively self destructive, and more depressed

b) benzodiazapenes make me extremely suicidal after only a few doses, let alone after taking them daily for weeks.

c) almost every psychiatric drug has similar side effects (ie. making me act like someone who might have borderline personality disorder)

Yes, Drs do give people medication that makes them sick.  They do it every single day and then label those same people as sicker than they were previously, with labels that stick with them for life.  No matter how recovered I might be, no matter how well I am, no matter how functional, those three words (borderline personality disorder) still have the power to put me into a dark box.

I know that I’m not alone with this.  Many women who live with PTSD, and who have used self harm as a method of coping,have been labelled and marginalized this way.   And so many youth became ill taking anti-depressants that they now have black box warning labels advising of the increased risk of suicide.

Scars criss cross my entire body and sometimes I wonder, if I’d never consented to taking the medications if my body would look differently today.  I know my life would.

 

What’s it been? Over a decade? (20 years today)

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April 12, 1996

The day my whole life changed.  It was exactly 20 years ago this evening that I went on my first date with X.  We went to the same high school, were the same age, played the same instrument.  I was 15 years old and I was happy, popular, involved in school, healthy and enjoying my life.

Within a few short months of being in a relationship with X I was depressed, socially isolated and on a dangerous path to developing anorexia nervosa.

X and I dated for 11 months.  During that time I was sexually and emotionally abused on an almost daily basis.  Nobody knew.  The social isolation was a particularly harmful aspect of the emotional abuse.  X was jealous of just about anything I did other than spend time with him.  He used to write me lengthy notes and typed letters whenever we were apart.  At times it felt caring, loving and at other times slightly disturbing.

I began to numb myself in various ways.  I developed my own methods of coping with the ongoing abuse.  At one point during that year I caught the stomach flu.  I was mildly ill for a few days and not eating very much.   My body felt empty, floaty, my mind felt quiet…and I loved it.  I had stumbled upon a new coping technique, restricting eating.   It was never about calories, losing weight, or fitting into a societal ideal for me.  It was all about control, about numbing out about the quiet feelings in my mind (I later learned that this was a form of disassociation).

Sometimes people who have been abused write letters to their younger selves as a part of their healing.  If I could tell my 15 year old self something it would be this:

Dear Ana,

It’s not your fault.  You are not dirty.  Do not be ashamed of your body.  What is happening to you is abuse.  If you feel uncomfortable it is not right for you.

Tell someone.  People care about you, so many people care about you.  Ask for help.  Someone will believe you.   You don’t have to go through this alone.

Talking about this is scary, but believe me…20 years from now, when your body is covered in scars and you have long term side effects of self starvation, you will realize that speaking out is simpler than the alternative.

This doesn’t have to be a secret.  You are not alone.  Forgive yourself and surround yourself with people who treat you with respect.

I’m so sorry that nobody can see what you are going through.  I’m sorry none of the adults in your life have figured out what is going on.  I’m sorry, but you are going to have to be the brave one and explain it to them.

You didn’t deserve this.  Don’t turn your back on yourself.

You are loved.

x

Adult me