Inpatient bonds.

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.

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.

 

 

No, you don’t have the right to torture me

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This is what the stigma of being misdiagnosed with borderline personality disorder means to me.  Trigger warning for description of self harm and abuse.

Monday November 8, 2004

I presented to the Emergency Room at South Street Hospital with a self inflicted cut on my arm.  By this time I had been using hospital psychiatric services for over 3 years.  I was a frequent flyer, a regular, a repeat customer and I was not popular.  I had experienced many unpleasant experiences in the ER.  I had grown accustomed to medical students poking at me and asking ridiculously offensive questions.  The worst was “Why don’t you cut yourself deeper so it would hurt more?”

I’m only going to say this once.  In my opinion someone who uses psychiatric services heavily is actually in MORE need, likely MORE desperate and experiencing MORE complex issues that someone who is visiting for the first time.  As mental illnesses progress folks become sicker and more marginalized by society.  What is needed are more individualized care plans, more compassionate care, more empathy and more listening to the survivor.  The survivor themselves is the expert in her own healing.  One size fits all models of care do not work, they have never worked, and will never work.  Each person is unique and experiences a unique mix of oppression and marginalization as they live with their illness.  Social and structural factors are an important thing to consider.  The survivor does not exist in a vacuum.

Believe me, if someone truly had options, they would NOT choose to spend their lives in psychiatric institutions.

Part of the reason I used the Emergency Room so frequently at that time was because I had neither a family doctor, nor a psychiatrist seeing me for ongoing care.  Lack of access to primary and preventative mental health care is a huge issue.  Another major barrier is the existence of a two-tiered mental health care system; whereby folks who have financial resources are able to access private care from psychologists and social workers and economically marginalized people (the sickest and most at risk) often face long waiting lists, lack of affordable housing and gaps in services.

By that time Dr. X had stopped seeing me.  This happened over a period of months.  First he would cancel appointments, then not show up for them.  I was busing across town to meet him and he just would not be there.  Then he switched from an outpatient practice and seeing inpatients on the 7th and 8th floor to working full time in the Urgent Psychiatry Clinic and the ER.  When he switched his practice I was not assigned to another doctor, nor was a given a community referral.  Thus, my only option was to attend at the ER to get a psych consult and an appointment with Urgent Psychiatry.  I begged and pleaded and searched for a new doctor but I was not able to find one.  I found out later that Dr. X had essentially blacklisted me at South Street and no psychiatrist would take me on because I had “borderline personality disorder.”  I was also denied access to the PTSD treatment program, after waiting on their list for 18 months.  I was told I didn’t meet the criteria for the program.  Ironic since PTSD is my main, if not only, diagnosis.

But I digress…back to November 8, 2004.

I waiting in the waiting room for about 1 hour before being brought back into the curtained treatment area known as OR 2.  When I was directed to a bed I began crying and was visibly upset.  A nurse arrived to take my history, but she was interrupted by Dr. P who dismissed her saying “you are wasting your time.”   Dr. P spoke to me in a curt and derogatory manner, asking to see my laceration.  He took a quick look at it and said he was going to staple it.  I began crying and asking him to please stitch the cut instead because staples really scared and triggered me.  Dr. P laughed at me and asked me to lie down and proceeded to quickly clean the cut.  He then held my arm down and proceeded to place 8 sutures into my forearm without using any local freezing or pain relief.  I was sobbing and screaming and he continued offering no sign of sympathy or concern.  I couldn’t understand why he was not following procedure and I was confused and distressed.  I felt as though I was being purposely targeted and tortured because my wound was self inflicted.  I felt like Dr. P wanted to “teach me a lesson.”  I was known to him from previous visits and I got the sense he did not want to see me in “his” ER again.

After he was finished the nurse came back and tried to calm me down.  She reported the incident to the charge nurse who also comforted me and offered me Advil.  I was then taken to the psych waiting area to meet with the doctor on call.  I was very upset, triggered and in a lot of pain.  I remember curling up into the smallest ball I could make in the uncomfortable plastic chair which was bolted to the ground.  The floor was covered in green tiles.  All the furniture was bolted down, presumably to stop patients from injuring themselves of others.  It was a cold room, I remember I was shaking and probably in shock.

I reported the incident to the College of Physicians and Surgeons a few days later.  The treatment I received was abusive and was physical assault.  I came to the hospital (already living with PTSD) and I was traumatized in a time of crisis.  I firmly believe that if my cut had not been self inflicted and if I had not been labelled within the hospital as a “hopeless case” this assault would not have taken place.

Procedure allowed Dr. P to write a response to my complaint.  In his response he actually admitted to speaking with Dr. X who told him that I “had long standing borderline personality disorder and that none of his colleagues would take [me] because of this.”  Incredible!  Psychiatrists in the hospital were actively denying me care due to a psychiatric misdiagnosis?  I wouldn’t believe it except I’ve seen my charts and I know it to be true.

Dr. P’s explanation for not using freezing was that he thought my arm was so full of scar tissue that I would not be able to feel the sutures.  This made no sense since I was screaming while he stitched my arm.  He wrote that he offered me anesthetic which was a lie.  Luckily the two nurses who were working supported my account of events.  Also the Dr did not note in the chart that I had refused local anesthetic which is standard protocol before proceeding without it.   I found out later that my complaint was not the first one made to the College about Dr. P and his behaviour in the ER.

The College upheld my complaint and Dr. P was ordered to appear before the College for discipline.   I’m not 100% sure what that entailed but my complaint was heard.  I did feel validated by that, but it did not undo the trauma that I experienced.

I experienced torture within a Canadian hospital.   This happened because of the label of borderline personality disorder.  This happened because I wasn’t getting better quickly enough, because I wasn’t acting in a way that was expected of a survivor of violence.

But this should not have happened, not to me, not to any person.  Especially not to a survivor of abuse.  Self harm was a normal coping reaction for me.  My personality is not disordered, I survived ongoing sexual and emotional abuse; as well as dangerous side effects to the very medications the hospital kept pushing at me.

My message to the world:

Please treat folks who harm themselves with care and compassion.  Chances are they are already judging themselves far more harshly than you ever could.  Self harm is a misunderstood coping technique, it is not a way to get attention.  If you haven’t harmed yourself, please don’t judge, you haven’t walked in our shoes.  The reasons why people turn to self harm are complex and layered. By showing love and compassion to the self-injuring person you could be literally saving their life.  We don’t want or need to be saved, we just want to be respected, heard, and valued.

If you do harm yourself, please know that you are loved and important.  I hope one day you will find other ways to cope.I support you and I am glad you are fighting rather than giving up.

The world is a better place because you are in it.