mental illness

The Fear Prison

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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.

Let’s Talk…

/ hopeforsanityblog / 1 Comment

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So you want to talk about mental health and stigma?

Let’s talk about:
-how few mental health care services there are for children under 12
-how long the waiting lists are for any of our vastly inadequate publicly funded mental health services
-how Canada has a two-tired mental health system and those who are economically marginalized are often completely unable to access any long term mental health care
-how few mental health care services are truly trauma informed
-how people who cope through substance use, self harm, suicidal thoughts or other “negative” coping techniques are stigmatized, blamed and often thought to be manipulative or attention seeking
-lack of services for eating disorders and long wait lists which exclude everyone except the most ill
-abelism
-the capitalist idea that people’s worth is directly defined by how productive they are (which contributes to the stigma faced by mentally ill people who are not able to work)
-lack of affordable housing options which keep survivors of violence from being able to leave
-poverty: it’s not easy to recover from mental illness when you don’t have the money for food
-racism, colonialism, transphobia, homophobia, sexism, classism and oppression which impacts people’s ability to access services and to recover
-the idea that mentally ill people are lazy and need to just try harder or cheer up
-the fact that many treatments and medications actually make people worse and the fact that it is often an extremely difficult and painful process to find a medication that helps (and whether or not these medication are affordable)
-how few psychiatrists there are and how short their appointment times are
-the lack of publicly funded counseling services, especially ones that are not just brief, time limited sessions (which often aren’t enough for trauma survivors or those with a serious illness)
-how people with mental illness still face discrimination in the workplace
-the whole “but you don’t look sick” issue which feeds into stigma
-the fact that most people don’t qualify for services until their situation is severe, chronic and urgent
-the lack of preventative care for mental illness
-how the school system is not trauma informed and how children with mental illness are often viewed as “problems”
-sexual violence, violence and intimate partner violence:the majority of people living with severe mental illness have experienced violence
-how lonely and isolating it can be to live with a mental illness
-how people who are “high functioning” are often not viewed as having a real illness, but those who are not able to function adequately in society are viewed as lazy or crazy
-high rates of suicide for trans and gender diverse people, specifically those who are not affirmed, accepted and supported
-how difficult (if not impossible) our fragmented mental health care system is to navigate
-high rates of burnout for staff working in the system which is overworked, underfunded and under resourced
-lack of culturally appropriate care for Indigenous folks
-the problematic aspects of the DSM
-media stereotypes which present people with a mental illness as violent, unpredictable and scary monsters (most recently the movie Split)
-horrible stigma perpetuating “games” such as the asylum escape rooms
-stigmatizing use of language (using mental illness related words as casual descriptors)
-joking about suicide
-the silence and isolation that family members, caregivers and the person themselves faces because their illness is a mental illness not a physical one (nobody is bringing casseroles after you attempt suicide)
-how hard it is to be a parent with a mental illness and the fears that child protection might take away your children because you have a history of self harm
-how hard it is to ask for help or be honest about struggling with mental illness because of the fears of stigma and exclusion
-how little funding there is for ending gender based violence
-how people with mental illness can become criminalized due to interactions with the police

This isn’t just about ending stigma.
#letstalk

 

You need a lot of energy to be sick.

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Another stereotype or stigma that I’d like to debunk right now is that people living with disability or chronic illness are lazy.  That they have SO much free time and can “do whatever they want” because they are unemployed.  We’ve all heard versions of this abelist stereotype.

It’s just not true.  People living with chronic health issues are as varied and different as people who are well, healthy, neurotypical or able bodied.  They are not lazy.  Being disabled is not a lifestyle choice.  Some people with disabilities are able work/volunteer/attend school and some are not.  Some have varying abilities depending on symptoms on different days.  Some people (like me) are “high functioning” (I HATE this term) and work full time, parent, take care of a house all while living with a high level of chronic pain and various chronic symptoms of mental illness.

But whether you are working or not, raising kids or not, volunteering or not, on social assistance or disability payments or not…I can say with 100% certain that being chronically ill is a lot of work.  I’d even say that it’s a full time job.  So we aren’t lazy, we are warriors.   Our work just isn’t valued by society, and a lot of it is invisible labor just to survive.

Please don’t perpetuate this stigma.  And please trust that each individual person knows what they can and cannot do.  If someone with a chronic illness is not working/volunteering/attending school it’s probably because their symptoms are too severe and they are not currently able.  Or maybe their workplace/school is not accessible for someone with their particular health issue.

It’s NOT because they a) don’t want to, b) aren’t trying hard enough, or c) are lazy.

Tonight, I have almost no spoons.  I drifted through the day, feeling foggy and having trouble concentrating.  I crashed on the couch and struggled to get up again.  I feel mentally and physically exhausted.   I didn’t run a marathon today, I didn’t work out…but I DID expend a great deal of energy coping with my health.

Before work I had a doctors appointment.  It was a new doctor, so there was stress and anxiety last night and this morning.  I got test results that weren’t what I was hoping.  I got requisitions for blood work.  I booked two follow up appointments.

Then I went to work.  Tried to focus, tried to get things done.  Took a break, got the blood work completed.  Went back to work for another hour.  Left at 3:30pm for a counseling appointment.

I see my counselor every 2-3 weeks.  I’d like to see her more often but it’s difficult to fit in around my other appointments, my work schedule, my kids, kids activities and kids medical appointments.  Again, as I mentioned, people with chronic illnesses aren’t lazy.  We often have numerous medical appointments that need to be juggled and fit in around already busy schedules.

Counseling is work.

If you are a survivor of trauma, and your counselor is pushing you, even gently, in the direction of healing, counseling can be exhausting work.   At the end of the hour I feel incapable of more than curling up in the fetal position on her couch and crying.  But instead I drive home and carry on with my day.

My counselor has been fairly patient with me.  She’s realistic about the fact that I have a LOT of current external stress in my life and she’s let me talk about that.  But in the past 6 months she’s begun to push me to talk about my past, my childhood, my core beliefs, and my trauma.  She’s also started to call me out when I disassociate in the session as a way of coping with feelings, memories and flashbacks.

I like disassociating to cope with feelings, memories and flashbacks.

It’s kinda my thing.

Most people don’t even realize I’m doing it.  Even fewer people would point it out.  Nobody else would purposefully try to stop me from using it as a way of coping.  I’ve always thought of disassociating as a self preservation, self protection mechanism.  I always thought I was coping if I zoned out to make a flashback less intense or make it stop.  I was coping.  It helped me survive, but maybe now there are other options…

My counselor wants me to stay present.  She wants me to TALK ABOUT what’s happening for me.  She wants me to describe it.  Or at least she wants me to stay with her in the room while it’s happening.  It’s very uncomfortable.   “But I LIKE disassociating!”  I whine…  “But it works!” I attempt to convince her.

She reminds me that I’m not alone.  That she is there to help me out of the feelings, body  memories and sensations.  That I don’t need disassociation and that maybe by zoning out I’m not actually allowing myself the space I need to heal.  Maybe I’m just stuck in a constant space of just surviving.  Maybe disassociating is actually taking up an intense amount of spoons to maintain.  Maybe zoning out is zapping my energy.

Chronic complex PTSD is exhausting.  Chronic pain is exhausting.

But maybe, just maybe doing the work of counseling and trusting the process might help restore my energy in the long run.  It’s draining work at the moment just trying to convince myself to TRY to approach my healing without disassociation.

I might have many flaws, I know I am not lazy.   Neither are you.  Keep fighting that stigma and keep surviving and thriving.

 

 

If depression were treated like a physical illness

/ hopeforsanityblog / 2 Comments

The holidays can be a difficult time for people struggling with invisible illness such as mental illness or chronic pain.  During the holidays we are “supposed” to be happy.  We “should” relax and have fun.  We are “meant” to connect with friends and family.  It’s happiest time of the year, right?

But what if you aren’t happy?  What if you want to be happy and connected more than anything else, but you can’t be?  What if depression is stealing the happy, the relaxing, the fun and the connection right out of your holidays?

People all around me have been cancelling plans due to the flu, a cold and other winter illnesses.  This is acceptable and even expected in the winter time.   It’s even considered polite and good manners to stay home and keep your germs to yourself.  It’s understood that you aren’t feeling your best and that you have no energy when you have the flu. It’s okay to stay in bed and eat soup and sleep for hours.  People are sympathetic and nobody expects you to just “cheer up.”

I can’t even tell people that I’m sick. I can’t cancel plans.  I can’t stay in bed.   I feel disapproving looks from people around me when I’m not smiling and when I sit quietly or lose my temper  more easily that usual.  I’m exhausted, and I won’t feel better after a few days in bed.  Even if I could spend a few days there.

It’s Christmas time and I’m living with depression and anxiety.

Yes.  I’m sick.  I’m more severely depressed and anxious than I’ve been in a long time.

I want to call in sick to life.  I’m not even suicidal, I don’t want to die.  I just want to give up on “acting normal” and “keeping up appearances.”  I can’t imagine going back to work next Monday, the thought makes me panicky almost to the point of tears.  I have fantasies about developing some serious physical illness…nothing TOO serious, just enough to get me about a month off work with no questions ask, but not SO serious that I’d be in the hospital.  I want someone to take care of everything and take all the stress away.

This is what happens when society doesn’t acknowledge mental illness in the same way it does physical illness.  People who are depressed are lowered to the point of imagining horrible illness as a reason to be “justified” in taking sick leave, or even just taking the day off to rest.

Because when you are depressed you get treated like a misbehaving, whining child when you are not happy and not feeling connected.   When you are depressed you feel like a shitty parent when you don’t want to play with your kids, or you can’t enjoy your time with them.  When you are anxious and don’t want to leave the house you have to push yourself through it, even when you don’t enjoy a single minute of the activity you are doing.

When you are depressed, a “good night’s sleep” won’t fix it.  When you are depressed, “just cheering” up won’t work.

When you are depressed, you can’t just “lighten up” or “just relax.”

Believe me.  I WANT to relax.  I WANT to lighten up.  I want to laugh with my children.  I WANT to have fun with you.  I WANT to feel connected.  I WANT to feel like more than an empty shell marching through the tasks of the day.  I WANT to have energy.  I’m fully aware that I’m not acting normally and I’m terribly self conscious about it.  I feel guilty all the time about how depression impacts me and those around me.

I didn’t ask for this, any more than you asked for that cold, flu or stomach bug.

I didn’t ask for this, any more than anyone ever ASKS to be ill.

I don’t need to be fixed.  I don’t need suggestions on how I can help myself.  I don’t need to be told to look on the bright side.  (by the way neither do people dealing with chronic physical illnesses!)

I need you to keep me company while I shuffle through this dark period.  I need you to be there for me and to not judge me.  I need you to remember that I’m sick and not malingering or misbehaving or ungrateful or lazy.  I need you to remember that I’m trying my best and sometimes MORE than my best just to get through each day.  I’m using every ounce of energy to hide the depression from you, from my kids, from everyone.

I’m in pain.  I’m tired.  I don’t feel hopeful.  The world seems like a dark place and I can’t see the end of it because my thoughts aren’t clear.  Just as a runny nose and cough are symptoms of a cold,  depression makes me think that everyone hates me, that I’m worthless and that I don’t deserve basic things.   Just as a flu causes a high fever and aches, anxiety causes me to imagine horrible things and obsessive irrational thoughts.

These are symptoms.   It’s not a choice.

I’m depressed and anxious.  I’m sick and that is not a choice.

I had the best holidays I could, while not feeling well or happy.

 

Seeing things.

/ hopeforsanityblog / 4 Comments

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It’s been a difficult week for so many of us, including women and gender non-conforming survivors of sexual violence.  I’m struggling with my PTSD symptoms.

Marian was the only one I could ever talk to about some of my more intense PTSD symptoms.  She was the only person I’ve ever met who I really felt completely understood what I was going through.  I never felt “crazy” when I talked to her.  I could call her, say what happened and every time she would know exactly what I was talking about because she’d experienced it too.

I’ve learned with symptoms of mental illness that there are some things that are more acceptable to talk about, and some things which are more highly stigmatized.  There are some symptoms which almost nobody ever talks about, for fear of being judged or experiencing discrimination or persecution.

In 2016, almost everyone knows someone who has struggled with depression, anxiety or who has issues related to food.  These are things we talk about.

People very rarely talk about suicidal thoughts, self harm, paranoia, delusions and seeing and hearing things that aren’t real.

It’s almost like there is a divide between the mental illness that society accepts and the mental illness that is forced to exist in the closet.

When PTSD is really acting up for me, I see things that aren’t there.

I’ve rarely told anyone about this because I know that most people won’t understand.  Marian understood.  I felt so accepted, like there was at least one other person in the world who experienced seeing things as a symptom of PTSD.

This week, there have been three separate occasions where I’ve “seen” my ex in public places.  It’s so hard to explain how this feels.   The first person was in the food court at the mall.  He had a coat, scarf and haircut similar to my ex, and even though I looked at him and my intellectual mind recognized it wasn’t him, I kept looking back over and over, convinced it was somehow him.  My heart was racing and I felt panicky.   It isn’t just the feeling of mistaking someone else for him.  I actually SEE him, in someone else.  Someone else is replaced by him for that moment and I’m afraid.

This happened again today when I was buying my coffee.  The person didn’t even look like my ex, but he became him for a moment.   My intellectual mind tries to reassure me that what I’m seeing isn’t real, but it feels real.  It happens with cars that look like his too.  Sometimes, I have to check and check again, sure that the car is his, even though intellectually I know it is not.

I’ve had this experience before, in the past, in the years leading up to me leaving my ex.  I would see X sometimes, when I was triggered.  I remember talking to Marian about it.

It’s an unsettling feeling.  Sometimes when I’m very stressed and have been sleeping poorly, I also see tricks of the light which aren’t there.   These experiences are all more illusions than actual hallucinations, but they are still disturbing and they signal to me that my brain is over-stressed, overtired and in need of relief.  My doctor assures me that none of these are psychotic symptoms, but they are symptoms of PTSD.

These experiences of “seeing things” are different that what happens during flashbacks.  They seem to happen just out of the blue when my brain is stressed.

During flashbacks, it also happens that my brain sees something from the past rather than what is in the present.  The person I’m with, “becomes” my abuser, I can’t trust what I’m seeing, my brain is mixing the past and the present into a mash up of confusion.

Nobody really talks about these things.  As a survivor it can be very isolating and it can make me afraid to speak out about the symptoms.  Sometimes I don’t know what is more terrifying: feeling crazy or worrying that people will perceive me as crazy.   I know, intellectually, somewhere deep inside, that I’m not actually crazy.  My brain is coping with trauma and it is doing what it needs to do to survive.  Sometimes this coping mimics, looks like, and produces symptoms of mental illness.  But often the symptoms are my brain letting me know that I need to reduce my stress.  If I don’t listen to the early warning signals, my brain escalates to more dramatic signals like suicidal thoughts and seeing things.

Learning to listen to my own inner voice is part of the healing journey.

Essentially,  I think society needs to talk about these stigmatized symptoms of PTSD and mental illness.  I think we need to break down the misconceptions and the misinformation and realize that for the most part, folks are just doing the best they can to cope.   When you are living it, all mental illness is terrifying.  It’s just a matter of degrees.  Sometimes the fear of stigma is what keeps people silent and stops them from reaching out for help.   Talking openly and without judgment heals.

I sometimes see things, but if Marian could understand, maybe you can to.

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.

No uniformed officers please.

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It’s Pride Week and I want to write about why I don’t think uniformed police officers should be in the Parade.   The police should be welcome, but they should attend the parade as civilians, dressed in ordinary clothing.

I’m not anti-police, so much as pro-safe spaces.  There are a number of groups of people and communities that may feel threatened by uniformed police officers (no matter how nice those officers might be!).  I know some LGBTQ* folks who have declined to attend Pride this year because they don’t feel it is a safe space for them.

Some communities that have experienced marginalization, violence and oppression perpetrated by police include (but are not limited to): Trans* folks, People of Colour, Indigenous communities, sex workers, immigrant and refugee folks, lesbians, gay people, queer folks, survivors of sexual violence, people with disability and people with mental health and addiction diagnoses.  Especially people who embody any of these intersecting identities in a visible or public way.   The police have a lot of power and privilege and this has often been used against, and not for/with, marginalized groups.

My own experience, and the focus of this blog, is related to my experience of living with a mental illness that does not always allow me to “pass” as normal or neurotypical.

I will describe one of my interactions with the police, as an illustration of my own preference not to have uniformed officers at Pride.

When I used to self harm and attempt suicide on a regular basis, I used to get to the hospital by car, bus, taxi or on foot.  Near the end of the years of regular ER visits, a doctor told me she didn’t think it was safe for me to drive myself to the hospital after cutting myself deeply.  I thought about it for a while and figured she was right.  The next time I hurt myself I was suicidal, not just cutting as coping.  I was home alone and I decided to call 911 rather than a taxi.   During the 911 call I told the truth to the operator.  I told them that I had cut myself on purpose and that I wasn’t feeling safe.  I sat on the staircase in the front entryway and waiting for the ambulance to arrive.

Suddenly there was a knock at the door and I could see tall people in dark uniforms outside.  I opened the door and two huge uniformed police officers stood there.  I was confused, already upset and I started panicking.  I asked where the ambulance was, I told them I changed my mind, I didn’t need police.  They came into the house and told me to sit on the steps.  They started asking me what seemed like hundreds of questions and told me I couldn’t move.  They asked me if there were weapons in the house, if I was alone in the house, if there was medication in the house, where the tools I had cut myself were, whether I had a doctor, what medications I took etc.

I felt more and more panicked.  I knew I couldn’t visibly keep panicking because I knew they wouldn’t leave until they felt I wasn’t a danger to anyone. The feeling of being out of control and knowing you can’t properly show your feelings is an unsafe and triggering one for a survivor of violence.

I felt like I had no choice but to do exactly what they said.  They told me the paramedics couldn’t come into the house until they were sure it was safe.  I tried to explain that I had harmed myself and had no intention of harming anyone else.  I was crying.  I offered to get the things they wanted (the blade, the medication) but they wouldn’t allow me to move.  I had to explain where the items were and one uniformed officer walked around my house collecting them, while the other stood and watched me.  They both had guns.  Generally, guns do not make a suicidal panicky person feel calmer.  Just FYI.

Then they were both back in the room.  I was sitting on the couch, now in the living room.  They asked me questions about my treatment and my medication. I didn’t want to answer them.  They were taking notes in a small black book.  I was keenly aware that this information could be used against me in the future.  I was scared I might have a police record, when what I really needed was medical attention.  I was confused and I didn’t understand how harming myself was a police matter.

Finally, at some point they determined the situation was safe.  Two paramedics, one man and one woman came into the house.  At some point the police left and went outside, making further notes in their cars.  I was embarrassed and ashamed because I knew my neighbours would see the commotion.  I felt my face burning with shame as I walked to the ambulance with the paramedics.  I begged them not to turn on the sirens because I was so embarrassed already.  I’d spent every minute since I opened the door to the house wishing that I had never called 911.     The female paramedic drove the ambulance and the male sat inside with me.  He was calm and kind and he didn’t have a gun.  I felt safer once the police were gone.

In the past, I’d had security guards sit by my bed, or just outside the door in the ER.  Ensuring that I didn’t run away before being assessed by the doctor.  That was associated in my mind with feeling unsafe and not being trusted.  Being a prisoner within a hospital rather than a patient.  That’s how I felt in my own home that day.

The ambulance took me to the hospital and I received treatment for my cut.  I wasn’t admitted to the hospital, because nobody really took my self harm seriously by that point.  They had labelled me borderline and didn’t believe I would ever actually kill myself.  I was often treated like a misbehaving child.

This memory is one reason why I don’t feel safe around uniformed police officers.  The other reasons, related to reporting violence, I will talk about more in future posts.

If I have a serious mental health crisis again in the future, I hope nobody will call the police.  I can’t think how that would calm me down or de-escalate the situation.  I would feel more at risk, rather than safer.

So, for this reason and for many others, I believe there are other ways to create safer and more inclusive spaces.  And LGBTQ* police officers, please feel welcomed by me at Pride…just leave the uniforms and guns behind.

 

 

 

Inpatient bonds.

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

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

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

These comments miss the point for a number of reasons.

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

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

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

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

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

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

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

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

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

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

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

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

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

Inpatient bonds are something to be celebrated.

I don’t care if it hurts, I want to have control…

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20160522_220818[1]“I don’t care if it hurts, I want to have control,  I want a perfect body, I want a perfect soul”

-Radiohead

One of the worst parts of living with anorexia is also the part that is the most difficult for others to understand.  Body dysphoria or distorted body image.

In the context of an eating disorder, and in my own case, this basically means that I’m never really sure if I’m seeing my body accurately or not.  When I look in the mirror sometimes I see a lot of things I don’t like.  I don’t like the majority of the middle of my body for example.  Lots of people can relate to that.  But for me what I see in the mirror can sometimes change dramatically from one day to the next.  Sometimes I look at myself and I can see the parts of me that are slim, sometimes thin even.  But when I’m stressed, upset or triggered I see myself as big…too big…taking up too much space.  I hate the way certain parts of my body look and feel.  I get upset at the feeling of clothing touching my body and I sometimes have to change my clothes a few times in the morning before I feel okay to go out.

It’s important to know that 90% of this is not about how I look to other people.  It’s not about vanity.  It’s not about wanting to look like a model in a magazine or an actress on TV.  It’s not a life style choice.  It’s not a choice, period.

Distorted body image and body dysphoria are symptoms of many eating disorders.  Eating disorders are medical illnesses.  You don’t have to “look sick” or be extremely thin to be medically at risk from an eating disorder.

Sometimes I want to scream because if I could get rid of Ana and live a “normal life” around food my days would look very different.  I don’t want to waste even one more minute obsessing about my fat stomach, or how much I should or shouldn’t eat.

I’ll tell you something about Ana…she is a total bitch.  She is also incredibly boring.  Probably the most boring person I’ve ever met.  Ana is abusive too.

Who is Ana?  She is my eating disorder.  I personify her and I experience or imagine her as a young girl, maybe about 15 years old, with dark hair and pale skin.  She never looks happy and she is never satisfied.  She’s often full of rage and full of anger and she seems to want to destroy the both of us.

Ana talks to me like this:

“Your stomach is fat. You are out of control.  You are so disgusting. You don’t even deserve to be alive.  You probably shouldn’t eat very much because it’s the only way you will feel better.”

Ana lies. Ana is cruel.  I’ve been living with her for almost 20 years now and she rarely gives me much of a break.

Because of Ana I have a hard time remembering what it is like to eat and feel relaxed, just enjoying the flavours.  I have a hard time imagining eating without obsessive thoughts and rituals.  Ana has this idea that by controlling food and controlling the size of our body she will solve all our problems and make us feel in control and safe.

Ana wants to be safe more than anything.  Unfortunately, she is young and she doesn’t know that controlling food makes her MORE at risk, more vulnerable and certainly more unhappy.

If I could live one day without Ana…

  1. I would get SO much done.  I’d have more energy because I’d be eating more regularly and more healthfully.
  2. I’d be able to actually concentrate because my body would have all the energy it needs AND my mind would be de-cluttered and not distracted by obsessive thoughts about food and weight
  3. I’d be able to relax and enjoy social time.  Until you live with Ana you never realize how much of society centers around food
  4. Did I mention how much more energy I would have?  Listening to, or fighting off Ana’s abusive inner monologue takes so many spoons.  It leaves me exhausted and on bad days depressed and hopeless

But even knowing all this intellectually, I have a hard time letting Ana go.  She does sort of keep me company, and she does sometimes give me the illusion that by controlling food, I’m controlling my life and managing overwhelming problems.

At the end of the day the truth is that Ana was born during the time I was being abused as a teenager.  Ana promised me things, and she deceived me into thinking that if I was smaller and took up less space I’d be safer.  But I wasn’t safe, I almost died.  And then when I was in imperfect recovery, I was abused again and again.

Ana doesn’t keep me safe.  Eating disorders have the highest mortality rate of any mental illness, especially among young woman.  They aren’t a choice and they do destroy lives.

I hope one day Ana will leave me alone.  I hope I will be able to look in the mirror and like what I see.  I hope  I will be able to eat without fear and guilt.  I hope I will pick my clothing based on what I like and not what will allow me to tolerate the body distortions for that day.

I still have some hope that I will let Ana go, instead of fumbling along in imperfect anorexia recovery forever.