The Fear Prison

It’s been one of those weeks where a number of seemingly unconnected events have been signs pointing me in a single direction.

I had a conversation with a friend on Monday (one which I will inaccurately paraphrase here) about the concept of a fear prison.  The concept as I understood it describes the moments when something becomes legal, permissible, even encouraged, but we are unable to embrace, accept or even explore it because we remain trapped in the FEAR of horrible consequences.  The fear remains, despite our logic brains reminding us that the actual danger has passed.  We can remain trapped, capturing ourselves into custom built, highly individualized fear prisons.  No amount of intellectual reasoning or reassurance from friends and family can truly convince us that the danger has passed, that we are safe and that the “risk” we perceive as insurmountable is, in fact, no longer a risk at all.  The fear prison is both irrational (because no actual danger exists) and extremely rational (because it exists based on threats which were at one time real).   The fact that it simultaneously FEELS real and is in fact not true, makes it a particularly challenging concept to work with.

As a survivor of abuse, sexual assault, family violence, relationship abuse and systemic discrimination and institutional violence caused by the very systems that were presented as existing to protect survivors, I have built a complex and sturdy fear prison.

This fear prison is the driving force behind, and explanation for, so many of my decisions and so many of the symptoms of PTSD which weigh down my mind, body and spirit.

Just under two months ago, my ex-husband signed court documents which were stamped and sealed by a judge, giving me sole legal custody of my two children.  In reality, this piece of paper opened the doors of a real prison.  It represented an actual, tangible increase in safety, decision making power and freedom of choice.  People in my life, knowing how long and hard I’ve fought for this piece of paper, celebrated for me.  They were happy and congratulated me for “winning” after a long fight.

I think many people are confused and somewhat disappointed by my inability to celebrate.  I don’t feel relieved.  I don’t feel safe.  I don’t feel like I have won ANYTHING.  I don’t find it easier to make decisions.  I don’t feel free.

I’m still caught in my fear prison.

The walls of the prison are built by a trifecta of related fears.

First, the fear that I can’t trust him and can’t trust the unpredictable nature of violence.  This is the fear that he might come back, that he might try to hurt me or hurt my children when I least expect it.  The fear that if I let my guard down and allow a feeling of safety to exist, that I will be most at risk.   This is entwined with a fear that if I allow myself to relax and feel happiness or relief that it will be taken away from me: swiftly, without warning and in a terrifying manner.  This is the fear that every decision I make, every plan I make, every step forward I take, everything I build can be taken away. That it will be MY fault it is taken away because I foolishly let myself believe I was safe.

Second, the fear that I can’t trust anyone.  The fear that if I’m honest with doctors about how I feel then they will judge me and find me wanting.  The fear that people don’t believe me about the events of my life and my experiences.  The fear that people find me annoying, whiny, controlling, and generally too needy.  The fear that if I open up, I will risk being hurt again.  The fear that honesty will result in terrible consequences and that I should be careful about sharing TOO much or needing TOO much because it might result in me losing my children.   This fear at a deeper levels is that other people believe that I am crazy, insane, mentally ill, hysterical or mad.

Third, the fear that rules them all, is the fear that I cannot trust myself.  The fear that I am crazy, broken, damaged and maybe delusional.  The fear that I can’t trust my own memories of the past.  The fear that I exaggerated or invented the abuse.  The fear that I’ve accused innocent people of crimes they didn’t actually commit. The fear that I’m making too much out of too little and that a “normal” person wouldn’t react this way, have these thoughts or these experiences.   The fear that all of the challenges, abuse and violence in my life have been either my own fault or creations of my own mentally ill mind.  This fear keeps me frozen, analyzing and picking apart all my flaws and potential flaws.  This fear fills me with shame and makes me feel worthless.  Or maybe I feel ashamed and worthless because of this fear.

Believing that others think you are crazy, that you can’t trust others and that you can’t trust yourself because you might actually BE crazy builds up an extremely secure fear prison.  A fear prison so strong, that no amount of reality, court orders, locks on doors, or distance can break down.

This fear prison can only be dismantled through my own healing process.  By gradually challenging my fearful thoughts and looking for evidence that my fears are no longer true or real.  It may be that some of the fears were NEVER true or real, but were creations of my abusers, projected on me and designed, plotted and crafted to drive me insane.

The path to “winning” is not in the court orders or external victories.  The winning is my stubborn refusal to give up.  The winning is staying alive despite the intense desire to die.  The winning is getting up each morning and living my life, in spite of the fears.  The winning is parenting and protecting my children each day. The winning is behaving as if I’m valid and sane, even when I believe I am worthless and crazy.  The winning is reminding myself that I am a good person and that only a very BAD person would abuse someone and gaslight them hoping they would kill themselves so they could be proven “right.”

In his mind, the only way my ex-husband can be proven right, be proven not to be an abuser, be proven to be righteous and a good person, is for me to kill myself.  If I kill myself it proves to him that I am, and have always been, CRAZY.   If I die, his narrative becomes the truth and my accusations become just the ramblings of a mentally unstable person, not to be trusted.   I will live forever just to prove him wrong!

There are reasons I have my particular type of fear prison.  I fear that I am crazy because I was led to believe this.  I was led to believe I was crazy by abusers who gaslighted me.  I was led to believe I was crazy by doctors who labelled me as borderline.  I was led to believe I was crazy by the police officer who never properly investigated my report of sexual assault.  I was led to believe I was crazy by the doctors and school principals who lied, under OATH, during my family law trial.  I was led to believe I was crazy by child protection workers who told me that I was projecting my anxiety onto my children and that I needed to be more neutral in my reactions towards my ex-husband’s transphobic violence.  I was led to believe I was crazy by family law judges, who denied that I had been abused (or denied that it was relevant to the custody arrangements).  The entire system, from the moment I was first assaulted (and even before) has been a set up to create in me the belief that I can’t trust myself, my memories, my body or my mind.

Breaking down my fear prison means trusting myself.  Breaking down the fear prison means living as if I am sane.  Breaking down the fear prison means that my memories are true and that the injustices I’ve survived actually happened.  Breaking down my fear prison means accepting that so much of the violence was completely and utterly out of my control.  That is TERRIFYING.   Believing that I was helpless to stop it and that it wasn’t my fault is terrifying.  Believing that I did everything I could and that I did my absolute best at every step and that I still was powerless to stop the abuse is terrifying.

But not as terrifying as the fear prison of believing that I am crazy.

I’m not crazy.

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/

How to ask for help? If mental illness was treated like physical illness…

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Photo credit Hyperbole and A Half Blog

I’ve been struggling recently with trying to figure out how exactly to ask for help.  How do you even tell people around you that you are not okay when you are struggling with an invisible mental health disability?  How do you tell people that the disability which you live with daily and generally “manage” is currently in a crisis state?  How do you tell people that you are struggling with thoughts of harming yourself?  How do you tell people that you need help because you are suicidal?  How do you even bring up the topic of suicide?

It’s not easy.  Half the time I drop the topic casually into conversation the person I’m talking to thinks I’m joking.  They might even laugh, then awkwardly realize I’m not laughing and say “Oh wait, were you serious?” and when I say “Kinda” I hear…

<crickets>

That’s right…nothing.

A lot of the time when I disclose thoughts about harming myself I hear:

<crickets>

Or people keep talking.  Or they assume this is normal for me and say “that’s too bad” and move on with the conversation.

I’ve learned that most people don’t know how to handle disclosures of thoughts of suicide.

If I walked up to you right now with a serious physical medical emergency, for example signs of a heart attack and said “I need help, I think I’m having a heart attack”  I can pretty much guarantee the response would not be:

<crickets>

Someone would do first aid, they’d call 911.  They’d drive me to the hospital.  They’d stay with me.  I’d get flowers and cards, meals delivered.   I’d get time off work, more cards.  People would visit me at home as I recovered.  Friends and family would be so glad I survived the heart attack, they’d offer to help with child care and housework and cooking.

People KNOW how to help with a medical health emergency.  So why do they respond with

<crickets>

to disclosures of thoughts suicide, self harm or other signs of a mental health emergency?

Why is it so hard for me even to disclose the struggle?  Why is there SO much stigma?

I’m afraid to ask for help because of the risk of two things

  1. The person will overreact (call 911, police, hospital, panic, lock up dangerous items)
  2. The person will under react (see <crickets>)

What I really need when I ask for help is for someone to:

  1. Believe me that I’m actually suicidal and that things actually feel THAT BAD
  2. Trust me that I’m not actually going to do anything dangerous, but that I need some help in the moment to achieve that
  3. Listen to me.  Validate my feelings.   Let me know that they can hear I’m in pain.
  4. Remind me that I might be experiencing flashbacks, triggers or emotional flashbacks and that they are real, but I might not be seeing things completely clearly and I might need time to get safe and get grounded
  5. Keep me company (text, phone, go for coffee, take a walk, cuddles)
  6. Remind me that people care about me and that I’m not a bad person.
  7. After validating my feelings, offer some hope that things will improve one day and that I have the strength to carry on until then.  Remind me of some of my strengths (but be realistic, don’t go over the top with praise)

I really believe that you can help people around you who might be struggling with suicidal thoughts.  You can help them by listening to them, believing them and keeping them company.  You can also offer to do some of the same things you would for someone who is physically ill.   Offer to help with child care, meal preparation, cleaning, picking up groceries, running errands, drop by for a visit (ask first), call to check in, text to say hi, send a thinking of you card, send flowers etc.   In my own experience, the worst thing you can do is…

<crickets>

I wanted to share my favourite  blog Hyperbole and a Half and their post about depression:

http://hyperboleandahalf.blogspot.ca/2013/05/depression-part-two.html

I’m reclaiming “crazy.”

I’m so tired of crazy being used as an abelist, stigmatizing slur against me by my ex-husband.  I’m fed up of being called crazy as an insult, as an excuse for his abusive behaviour.  I’m tired of gaslighting which blames my PTSD for the sexual violence he perpetrated.  I’m tired of being seen as less than, being labelled with things that don’t apply to me.  I’m tired of the implicit assumption that having a mental illness is a terrible thing, something I should be horribly ashamed of.  It’s problematic on so many levels.  He accuses me of having borderline personality disorder (which I don’t have) but even if I DID have it, so what?  Would I be “crazy?”   Would this warrant being mistreated and shunned and ignored?  Would it mean everything I say and do is suspect?

I reject all this.  I want to reclaim crazy.  I want to fight mental health stigma.  I don’t want to be ashamed that I’m not neuro-typical.

I’d like my ex-husband to stop spreading awful rumours about me in the community, but I don’t have control over that!

Things I would like to stop hearing as I reclaim crazy:

-Be more neutral

-You are too emotional

-You are too sensitive

-Tone down your feminism

-Your past is impacting your parenting

-That was a long time ago, why don’t you get over it

-Just relax

-Calm down

-Don’t worry so much

-You are over-reacting

-Why didn’t you just say no?

-Don’t you know how to defend yourself?

-Why didn’t you just fight back?

-She’s crazy (from anyone unless they are also reclaiming the word)

I celebrate being crazy in a positive way, because it means that I’m NOT neutral.  It means that I am an advocate, a social justice warrior, an ally and a support worker.  I’ve harnessed some of the energy of the bad things I’ve survived and I’m using it to help others, to fight injustice and to try to leave the world a better place than I found it.    I’m proud of my feminism.  I’m proud of my anti-oppression principles and the way I strive to unlearn and learn in my daily life.  I don’t want to calm down.  My feminism gives me energy and it keeps me alive.

And if that makes me crazy, then I embrace it.  But let me define crazy.

Nevertheless she persisted.

 

Sick Days.

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I’ve been home sick the past few days and sick on and off for a while now. It’s really difficult sometimes to separate physical and mental health symptoms.  Everything is all blurred together and it’s hard to tell when to push myself harder and when to rest.  This past week has been an explosion of physical and mental health struggles that are creating a storm of symptoms and have forced me to (uncharacteristically) stay in bed.

I haven’t met very many people who understand the complex intertwined experience of having both physical and mental health issues simultaneously.   Most doctors aren’t very trauma informed and also struggle to validate that both physical and mental health issues can occur simultaneously, and be either linked, not linked or both linked AND not linked to each other!

One of the things I’ve been coping with in the past few weeks is a urinary tract infection.   Obviously, an infection is caused by bacteria and isn’t a mental health issue.  But I was also really triggered in the past few weeks and this made me extremely reluctant to seek medical care.  I was afraid to go to a walk-in clinic, afraid to see a doctor, afraid to be examined.  This was linked both to past trauma around the medical system AND generally high levels of panic and anxiety related to stress with my ex and my kids experiencing abuse.   Thus I waited for over a week to go to the doctor, by that time my symptoms were much worse and I felt pretty awful physically.

This is an example of how physical and mental health issues can be both separate and linked at the same time.  The infection itself was physical, but my avoidance of the doctor was mental health and trauma related.   Of course you might also argue that my high levels of stress and anxiety also generally lower my immune system and make it harder for me to fight off infections.

By the end of last week I was on antibiotics, but I also developed a sinus cold.  I had a migraine related to receiving a nerve block to treat the migraines, but the sinus congestion put pressure on the nerves that were being treated.   My anxiety was causing panic attacks and making me afraid to leave the house for fear of running into my ex.

Thus again, my high levels of stress probably didn’t help any of these physical issues that I was dealing with.

When someone has an infection, generally they are advised to rest.  But resting is difficult when you are also struggling with severe anxiety and panic attacks.  My head gets filled with worries about work and what I’m missing and what people think about me being away and creating all sorts of worries and fears, many of which are not realistic.

Anxiety causes me to feel like a failure.  It causes me to feel like making a mistake is a terrible thing which can’t be recovered from.  It causes me to feel like everyone around me hates me and thinks I’m doing a terrible job.  Or worse, they think I’m faking being sick to avoid responsibilities.  A lot of my irrational worries centre around feeling like nobody believes me and that nobody likes me.

Experiencing abuse, and extending periods of emotional abuse, as well as abuse within systems, has lead me to fear and avoid conflict of any kind.  I want everyone to be happy all the time.  I get very anxious when there are disagreements and I’ll often apologize even when I’m not sure I have done anything wrong.   I’ll do what I can to avoid conflict, because when interpersonal conflict levels are high around me, my anxiety levels feel unbearable.  Because ongoing interpersonal conflict is a trigger.  I try to keep people around me happy because I want to feel safe and BE safe.

Unfortunately, in the real world, conflict is unavoidable.  Disagreements are part of life.  As the saying goes, you can’t please everyone all the time.

But I want to!  I need a lot of reassurance from people around me that I’m doing an adequate job.  I need reassurance that conflict isn’t dangerous.  I need reassurance that people believe me, that they believe I experienced abuse, that they believe I’m trying my best.  I need reassurance so badly because my internal dialogue is so self critical and judgmental.

I know it’s not the responsibility of those around me to constantly reassure me.  I know I’m an adult and I have to take responsibility for my own feelings and fears.  The difficult part is that while I’m experiencing ongoing abuse and conflict which is outside of my control, my self esteem is constantly being eroded and challenged.  I need reassurance because I haven’t yet learned to fully believe and reassure myself.

I believe this is very common for survivors who have experienced long periods of gaslighting or complex emotional abuse.    It’s hard to build up a stable sense of self when you are being confused, beaten down and made to feel like you are crazy and nobody will believe you.

Survivors need a lot of patience.  Sometimes you might get frustrated with me.  Sometimes you might feel like I’m being unreasonable.  Sometimes you might not understand why I’m SO upset over something SO little.   Please remember that it’s not little to me.  My reaction could be related to feeling triggered and that trigger is making me feel like a failure.   If you have the energy and patience to reassure a survivor, please do so.  She might need to hear thousands of times that you believe her and that you don’t think she is crazy.

I need to hear it a thousand times.  Especially on weeks like these where I feel crazy, broken and like a failure.

Being physically and emotionally sick at the same time isn’t a lot of fun.  Taking sick days when you are struggling with severe anxiety and PTSD isn’t fun.  It’s not relaxing.  It’s not “a break.”

I guess sometimes we have to carry on, try to move forward, even if we don’t believe or have faith that everything will work out for the best.

Talking to kids about mental illness

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At dinner tonight my  kids were joking about various things and my younger child started joking about being in the “mental health room” and the “mental health unit” and basically laughing about people being crazy.

I felt frozen.  I’m a social justice warrior parent and I’ve been quick to call in, correct, and stop my kids around issues like racism and oppression.  But I was tired today and I wasn’t sure how to broach the subject that I’ve been a patient in mental health hospitals.   My older daughter knows about some things from my past.  They both have seen my scars and know that I used to self harm.  My older daughter knows a bit more, she was more aware of my depression before I left her father.  But they don’t know even a fraction of the story.   I wondered today about what they will think of me when I tell them.

I wanted to jump into the conversation with “it’s not polite to joke about people with mental health problems.”  But that didn’t seem like enough and I was so tempted just to honestly say: “I’ve been in mental health hospitals and it’s not something funny to joke and tease about.”  I wasn’t ready for the conversation and they were happy and I didn’t want to add stress to the evening.

But now, hours later, I’m thinking about it.  What will I tell my kids about my past?  When will I tell them?  Will it be planned, or will it spill out one day in a situation like this one?   I don’t want to talk too much about things that might upset them, but I also don’t want them to feel like mental illness is a taboo or a stigma that people should be ashamed of.

How do we talk to children about mental illness?   Before my first child was born I downloaded a fact sheet from CAMH called “talking to children about mental illness.”  I told myself that I had a few years, until she was 2 at least, to fully recover.  I told myself that she would never know and that I’d be 100% better by the time she was old enough to be aware.

I was optimistic.  But even when I downloaded the fact sheet, I think a part of me realized that it wouldn’t be that simple.  Anorexia, depression, anxiety and PTSD weren’t going to disappear the moment my new baby was born.  It made me (and makes me) so sad to think about talking to my children about my mental health struggles.

The fact sheet suggested reassuring the child that they were not responsible for my health.  Reassuring the child that I was seeking my own help and talking to other adults about my issues.  In this way, she would not feel responsible for me or worry about my health.

I struggled with postpartum depression after both my kids were born.  My older child was impacted more severely because she lived through both episodes.  I struggled to cope with taking care of my toddler after my second baby was born.   I hated myself for it and I still struggle to forgive myself for how I felt during the postpartum depression after my second baby.  By the time my older one was 5-7 years old, I was again coping with depression due to the abuse in my marriage.

My child was bright and extremely emotionally aware and emotionally intelligent.  I knew she worried about me and it broke my heart.  I knew she was aware that I was not happy.  When she was about 6, I read her some books from the public library which explained depression to children.  I told her the words from the fact sheet: “I love you,  I talk to my doctor and my friends when I am sad, you aren’t responsible and it’s not your fault.”  But it was difficult and I felt like a horrible mother.

My eldest was 18 months old when she first noticed my scars.  She was sitting on the potty and she looked at my arms and said “draw, draw?”  She thought they were marker marks on my arms.  I told her they were just marks and not to worry.  I knew I was only buying time until she would ask again.

When my eldest was 7, I separated from her father.  My mood improved and we no longer talked about depression. But over the next year she started to ask me incessantly about my scars.   For a year I told her that I would “explain when you are older,” but after a time it wasn’t enough.  She began to cry at night, get angry at me and say that I didn’t trust her enough to tell her.  She started refusing to talk to me about her problems because I wouldn’t explain the scars.  I spoke to my doctor and together we came up with a plan of how I could talk to my daughter.   He said that the fighting was likely more damaging to our relationship than just telling her an age appropriate version of the truth.

So I told her.  I told my 8 year old child about my past self harm.  I told her that all the scars were due to me injuring myself.  It was very difficult for me and I had a lot of guilt.  I told her a version of the truth.  I told her that when I was younger someone was mean to me and not respecting me and that I never told anyone.  I told her that sometimes when you keep secrets like that inside you start to cope in bad ways like hurting yourself.  I explained to her that this is why I always encourage her to talk to an adult about her problems.   My daughter was sad.  She told me that self harming was a very bad decision and that I should have talked to someone.  She asked me such a wise question: “If someone was hurting you, why did you hurt yourself?”

Since I told her, the questions stopped.  Once in a while I notice her looking at my scars with a sad expression, sometimes when I read to her at night she touches them and looks wistful.  I hope that my honesty will allow her to make choices to help herself in her own life and not turn to such negative coping.   My younger child still thinks the scars are cool, like battle wounds that make me funky and unique and a warrior of sorts.  She knows on some level that they are from self harm, but I’m not sure she is ready to accept that and she doesn’t ask questions.

I don’t think that talking to an 8 year old child about self harm is ideal.  But what options do I have?  My scars are obviously visible and it’s impossible to deny them or hide them.  If I had another type of physical disability I would have to explain that to my children.

Why is it so difficult to have open and honest conversations about mental health and mental illness?

I would like to tell my children that joking about the “mental hospital” isn’t funny.  I would like to tell them that it is triggering for me and could be upsetting for other people as well.  I want them to know that there is no shame in asking for help and getting treatment for a mental illness.  I do want them to know some aspects of my story when they are a bit older.  I want them to know because I made a lot of mistakes, and I hope that the knowledge I’ve gained on this journey could help them avoid the same mistakes.  I also want them to be the kind of people who help others rather than judging them or putting them down.

I want to shatter the stigma.  But today I was tired, my kids were happy and I didn’t want to put a shadow over a good day.   The conversation that started at 18 months old with an innocent “draw, draw” is likely one that will be taking place in stages as they grow up.  My psychiatric survivorship story IS my life, it is a part of me, and because of my scars I can’t hide it, even if I did want to.

And maybe one day I won’t feel ashamed and embarrassed to talk about it.

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.

It’s Census Time and a box is missing

flexible-gender-identity

I’d like to write about something different today.

Canadians across the country are excited about the 2016 Census.  So many of us wanted to be counted that we collectively crashed the website on the first day.

So why is an entire diverse group of individuals in Canada not able able be counted?

The 2016 Census reads like a 1950 Census.

The options for gender are:

Male

Female

And that’s it. Even though our Prime Minster says he is a feminist, and was often quoted after being elected as saying “Because it’s 2015,” the government completely lost the plot when they created this Census document.  Why?  Because it erases an entire group of folks who already face systemic discrimination and oppression.

Transgender folks, non-binary folks, gender non-conforming folks, intersex folks, two-spirit folks

How can all of these folks correctly indicate their gender when many of them do not identify as male or female, but maybe as both, neither or something that doesn’t fit into any check box?

My Census form would include the following options for gender:

Man

Woman

Transgender Man/Boy

Transgender Woman/Girl

Intersex person

Two-spirit person

Non-Binary Person

Other:__________

Give us options!

Also, for the record sex and gender are not interchangeable terms!

I am a cisgender (born female, identifying as a woman) person who realizes that this is a privilege and I would like to use my voice to be an ally for those who are gender non-conforming.   I certainly do not want to speak over voices of people who are not cisgender.  I do want to tell my government that I do not want their voices ignored. I will write more about why this issue is one I feel passionately about in another blog entry.

This entry is relates directly to the mental health theme of my blog. Supporting, validating, hearing, recognizing and empowering gender non-conforming folks contributes to better mental health outcomes for them.   Also, transphobia is a form of systemic oppression.  Being oppressed isn’t conducive to health.  It’s also important to remember that oppression is layered and multiplicative.  Trans and gender non-conforming folks who are also People of Colour face even more risks and exclusion because they experience with racism and transphobia.  Same goes for trans folks who live with disabilities (abelism) and those who identify as, or are read as women (trans misogyny).

The 2016 Census, in my humble opinion, does not support, validate, recognize or empower gender non-conforming Canadians.  It erases their very existence and clings to the rigid gender binary.  It further marginalizes a marginalized group of  diverse citizens.

Shame on you Census!  It’s 2016 and everyone’s voices deserve to be heard.