stigma

Representation Matters.

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Today is the International Day of Trans Visibility and this morning I saw this piece of art in my social media feed.

56201130_10157428215713598_5544235667359268864_nIt was created by an artist Hannah Daisy @makedaisychains (photo credit to her.  https://www.patreon.com/hannahdaisy)

I felt deeply moved by the image and spent most of the day thinking about it.   Why did this image impact me so intensely?  As a non-binary person who has scars from self harm, I felt represented and valid in a way that I didn’t even realize I needed.  In this image, the arm with scars is just one in a series of different and unique arms raised in an empowered fist.   It is SO rare to see art that includes self harm scars that neither stigmatizes, sensationalizes nor glorifies self injury (and cutting specifically).  In this art piece, the self harm scars are matter of fact but are not the focus of the image.  The scars are shown as healed/healing and thus represent a hopeful message of recovery and life after self harm.  The image implies that recovery is possible, but also depicts the reality that mental illness is not always an invisible illness.  It shows that scars do not have to be hidden and can be accepted as part (but not the defining aspect) of a person.  This image does not show the person who self harmed as an object of pity or of revulsion.  It doesn’t make me feel sorry for the person, it makes me feel that they are a SURVIVOR.

As a person who has a multitude of scars from decades of self harm, I needed to see this. I needed the representation SO much. I needed the message that I’m not shameful, disgusting, broken, crazy, insane or violent.  I needed the message that my scars do not define me.  I needed the message that SOMEBODY out there, an artist, sees my scars as a sign of strength, resilience and SURVIVAL.  I don’t want to feel ashamed of my scars.  I don’t want to feel judged by society.  I don’t want to receive stares of pity or confusion on a summer day.  I want to choose my clothes based on what feels comfortable, not based on what will hide the scars and keep me safe from stigma.   Because there is an intense amount of societal stigma associated with self harming behaviour (and cutting in particular).  It is misunderstood, even by mental health providers.  It is often treated as a contagion, something that will spread like a virus to others.  It often leads to exclusion and intense self hatred/shame/guilt and isolation.  It is almost always portrayed as entirely undesirable and destructive, never acknowledged as a complex, coping mechanism that has often helped a person survive extremely difficult times when they had few other options to survive.   Self harm is almost always conflated with suicide, when often  people who self injure are doing so as a way to stay alive and to cope with hopeless, intense or overwhelming emotions.  (Self harm and suicide can go hand in hand, but not always).

I felt seen and I felt valid.  I can’t remember the last time a piece of art made me feel so  affirmed and understood.

Later in the day, I was scrolling through social media and saw the same image on another website.  But this time the image was altered:

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In the second image, the scars are censored.  They are replaced with what looks like the reflection of white lights or stars.   This second image made me feel erased, ashamed and frustrated.   I can understand that the website might not want to trigger folks and it might not want to be seen as “promoting” self harm behaviours.  I can understand why someone might think censoring the image was in the best interests of the public, but as a person who self harms, I completely disagree with the censoring.

I didn’t feel triggered by the first image, I felt REPRESENTED.  As I mentioned, I don’t believe the image in any way glorified or promoted self harm.  I saw the image as respectfully acknowledging the fact that many trans and gender diverse struggle, in a large part because of transphobia and lack of acceptance, with various types of self harming behaviours.   That doesn’t mean that we are weird, odd, crazy or broken. It means we are surviving.

What this censoring means to me?

It means that the people running the second website think I should hide my scars, that they are a bad influence on others or that they might make people uncomfortable.  It makes me feel that I should be invisible or deserve to be invisible. It makes me feel that self harm is SO terrible that it needs to be blotted out and erased, replaced with stars and light that won’t make anyone uncomfortable.

Does that mean that my existence makes you uncomfortable?

Should I be ashamed and hide myself away?

Is my mental health disability SO unpalatable to others that it needs to be censored?

If today is International Trans Day of Visibility, I think that means ALL trans and gender diverse folks deserve to be visible (if they want to be) and that includes trans folks with mental, physical and invisible disabilities.  We have to work from an intersectional perspective that does not erase the various lived experiences of people.  Representation DOES matter.  People with disabilities so often lack positive, affirming and realistic representations of ourselves in media, art and society.   Representations that neither treat us like inspirational stories nor tragedies.

Because we are SO much more than that.

Let’s Talk…

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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

 

Why are psychiatrists so ignorant about eating disorders?

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ShameScale

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

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

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

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

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

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

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

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

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

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

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

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

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

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

How to cope with chronic suicidal thoughts…

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People who don’t struggle with chronic suicidal thoughts sometimes imagine suicide as the type of crisis that happens in the movies.  And it can happen this way, but not for everyone.  You know the cliched scene (we’ve all seen it) someone loses their job, breaks up with their partner, makes a terrible mistake, suffers the loss of a loved one etc. and they spend a dark night contemplating ending it all.   Maybe they reach out, a friend comes over, makes them tea, stays up all night and talks them through it.  Or maybe they are taken to a hospital emergency room, where staff admits, them and they are released a few days later, on medication and thankful that they are still alive.

Yes, single episode suicidal crises happen.  They are terrifying and frightening and can be medical emergencies.  If you are struggling with this type of crisis, you are not alone.  Suicide is a permanent solution to a temporary problem.   There is help available, even though reaching out can be scary.

But what if this isn’t your experience.  What if, like me, you struggle with chronic suicidal thoughts, on and off, for decades?   What if suicidal thoughts and suicidal impulses became, during times of trauma, part of your coping mechanisms?  What if suicidal thoughts, ironically and paradoxically both threaten your life and help keep you alive?  What if it isn’t just “one long dark night”?  What if it isn’t something that a trip to the local emergency room and a short psychiatric admission can even touch?  What do people like me do when they hit a rough patch?

It’s complicated.  It’s complicated for a number of reasons.

  1. It’s very hard to even talk about suicide.  It’s not an easy subject to bring up.  I’m always afraid that people will either overreact (ie. treat it like the suicidal crisis described above and call emergency services) or under react (and ignore my disclosure or not offer support).  Let’s face it, most people aren’t comfortable talking about suicide.  If someone asks me: “How are you doing today?”  they don’t want to hear “Actually I’m dealing with suicidal thoughts at the moment, thanks for asking.”  It’s just not something I can say.
  2. If I do disclose that I’m having suicidal thoughts, most times people just sit there awkwardly.  Try to figure out if I’m joking or serious.  And then change the subject.  Meanwhile, I’m sitting there, just as awkwardly, feeling guilty for making the situation awkward and not just saying “I’m fine.”
  3. See point #1.  Talking about suicide is a societal taboo.  I’ve had these thoughts for 20+ years.  I’m still alive and I’m still finding it difficult to talk about them.  There is something about this that doesn’t quite make sense.
  4. There is an incredible amount of shame related to this societal taboo.  This means that not only do I feel suicidal, I also feel ashamed about it.  I also feel afraid about the consequences that could occur if people find out and misunderstand what chronic suicidal thinking means (aka…911 calls, police, hospitals).
  5.  Suicidal thoughts are not a “cry for help” or a “way to get attention.”  Most of the time I deal with suicidal thoughts alone and people aren’t even aware that I’m having them.  Even when I do disclose, I generally minimize how bad they are.  I try to cope by myself as much as possible.  Self harm has also been a very private thing in my life.  For something to be a “cry for help” generally other people need to actually know about it!  It would be more accurate for me to describe the suicidal thoughts as a way to gain control, the ultimate control, over an overwhelming or out of control situation in my life.  It’s also related to obsessive compulsive thinking, and in that way can be circular and very difficult to control.  Sometimes I have intrusive thoughts about suicide that are obsessive and not related to anything in particular in my life.  They are disturbing to me and they are  unwanted, arriving in my brain suddenly and then leaving.

So how do I cope with these chronic, obsessive suicidal thoughts?  I use some combination of the methods below, depending on what type of thoughts I’m having, how long they last and how severe they are.  It can be helpful to make your own “safety list” with various ideas that you can use when your suicidal thoughts make an appearance.  I suggest that you create a variety of coping ideas, because chronic thoughts of self harm are very persistent and won’t likely go away with the use of just one distraction or grounding technique.  If you are lucky enough to have a supportive partner/friend you can give them a copy of your safety list and they could help you use some of the skills in a crisis situation.  For some folks, taking medication or calling a support line can be items on their lists.

  1. Delay. Delay. Delay.
  2. Distract. Distract. Distract.
  3. Remind myself of reasons why I need to stay alive (aka my kids)
  4. Listen to nature sounds on Spotify.
  5. Get in a safe space (aka my bed, under lots of warm blankets, away from anything potentially dangerous.  This works best for the most severe thoughts when other techniques may not be safe)
  6. Take a walk outside, ideally in nature.  Breathe, move my body.
  7. Drink a hot beverage (tea, hot chocolate, coffee)
  8. Reach out to a trusted friend (I may or may not tell the person I’m struggling)
  9. Blogging (others may use journaling, art or other creative outlet)
  10. Helping others, volunteer work, helping a friend in need (this works very well for me, but caution as it can lead to burn out if this is your only coping tool)
  11. Disassociate or zone out (ensure that it is safe to do so)
  12. Pay attention to your environment.  Count things you can see, feel, touch, hear.  Ground yourself in the present moment.

If you are coping with chronic suicidal thoughts, I hope that reading this post helps you to feel a little bit less alone.  If you don’t struggle with them, I hope it helps you to understand them a little bit and maybe allows you to help others around you who might be living with them.  Many people live with suicidal thoughts for years, it’s exhausting.  So very exhausting and nothing at all like what is presented in the movies.  But it has to be better than the alternative.  So I keep trying and keep breathing!  Keep hoping that it will get easier for all of us!

I’m reclaiming “crazy.”

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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.

 

Internalized Stigma.

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Stigma causes me to make terrible choices.  Internalized stigma is dangerous to my health.  This is what I learned over the past few weeks.

Why do I feel so many complicated feelings about taking an anti-psychotic medication, but completely different feelings about taking arthritis medication?  The answer is internalized stigma.

Mental health stigma has taught me to be ashamed that I take psychiatric medication.  Internalized stigma causes me to think that I shouldn’t take the medication, that I should try to stop taking it as soon as possible, that I’m weak and somehow not good enough because I need medication to stay functional.  Basically, stigma lies.

Recently I started an alternative treatment which was helping me to sleep.  Because I was able to fall asleep, I decided to reduce my anti-psychotic medication.  I don’t need this!  I can function without it!  I’ll be fine as long as I’m still sleeping!  I feel okay!  What could go wrong?

As it turns out, a lot could go wrong.

Within a week of reducing my prescription medication, I was having multiple panic attacks a day, having paranoid thoughts, thinking that I was seeing my ex everywhere, afraid to leave the house and almost impulsively quit my job!

I was physically sick, dealing with a lot of triggers and somehow I thought it was going to be absolutely fine to reduce my psych meds!

I’m going to blame this on stigma.

I’m also going to blame stigma for how long it took me to realize that the change in medication was directly linked to my crisis state.

I mentioned it to my psychiatrist over the phone.  We talk very infrequently since I’ve been stable for the past few  years.  He told me to take the medication.  He told me that I have so much going on and so much stress that I don’t need to justify to anyone that I need the medication.  He said, just take it.  Just take it and don’t worry about it.

I thought about it and I realized he was right.  Why was I fighting so hard to reduce the dose of a medication that wasn’t causing me terrible side effects and, in fact, was reducing some of the most unpleasant PTSD symptoms (panic, paranoia, seeing things as a result of flashbacks)?  Why was  I judging myself so harshly?  Why was it more important to reduce the medication and not be “dependent” than it was to keep my job?

The answer was that it wasn’t more important.  That I didn’t need to judge myself.  That I needed the medication to keep the symptoms at bay.  Yes, the anti-psychotic medication (as it’s name implies) was ACTUALLY keeping me functional and not on the edge of psychosis!

I started on the higher dose that night.  Within 2 days I was back at work, within 4 days the panic attacks were reduced and almost back to “normal” levels.  Within a week, I’m feeling more hopeful and less terrified.

These pills help me.

Yes, I’ve had horrific experiences with psychiatry and psychiatric medications.  Yes, some of these drugs have made me worse and almost killed me.  Yes, there is a social stigma associated with anti-psychotic drugs.

But I’m going to work on not internalizing this stigma.  I’m going to work on accepting what is.  Accepting my current limitations.  Accepting that PTSD is a brain injury and it’s logical to take medication if it helps balance things out.

So next time I start talking about decreasing my medication, please remind me to re-read this post.  Please remind me that my health is more important than stigma.  That I’d rather be functioning and medicated, than in crisis and able to say that I don’t take any medication!  Remind me that going off my medication is NOT a good idea right now.  And maybe be gentle with yourself too…do what you need for your recovery.  Do what you need and don’t let judgment (by self or others) get in your way.  You are the expert in  your own healing.  Trust that.

 

If depression were treated like a physical illness

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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.

But why didn’t you report it?

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I wanted to write a short post about why survivors of sexual assault don’t report and often don’t tell anyone.  More specifically, why I didn’t.  There are as many reasons not to report and/or tell as there are different survivors.

To distinguish the terms, reporting means telling someone in authority, for example the police, law enforcement or people in a position of power.  Telling, could mean talking to a friend, a family member, a doctor, counselor, religious leader etc.   Reporting is often done to accomplish some goal related to punishing the perpetrator or holding him accountable.  Telling is often done for the benefit of the survivor, finding support, discussing options, being believed and validated.

It can be very dangerous to mix these two concepts.  Because the people you might report to (the police for example) are not likely to, nor is it fully their job to, support the survivor.  In my opinion, it should be their job to BELIEVE the survivor, but even this cannot be guaranteed.

Some women choose to tell, but not to report.  And some survivors neither tell, nor report.  It’s important to remember that this choice should always be made by the survivor and she should not be pressured into reporting.  Sometimes the question “why didn’t you report it?” can feel extremely judgmental and can shut someone down even further.

Let’s talk about some of the reasons women, and folks in general, tend to stay silent when they experience sexual violence

  1. Real or perceived stigma associated with being a survivor of sexual violence.   We live in a rape culture society that tends to blame the victim and most survivors instinctively know this.   In many situations, there is also a great deal of internalized sexism, internalized judgment and internalized guilt and shame related to being abused which created a sense of stigma that might not have actually existed.
  2.  Fears of not being believed.  Many people stay silent, to avoid giving other people the power to judge whether they are telling the truth of not.
  3. Fears related to what they were doing at the time of the assault.  For example if the woman was drinking, if she was out late at night, if she willingly went to the perpetrators house etc.   Many survivors assume that because they consented to one thing, it means they automatically deserve the assault that happened, or that they will not be believed because they “put themselves in the vulnerable position” or were “asking for it”
  4. Fears related to oppression.  A woman may feel afraid to come forward if she is marginalized in any way, for example a Woman of Colour, a person with a disability, a person with a mental illness, a queer person, a trans person, a sex worker or someone using substances.  These folks may feel they will not be believed due to their experiences of oppression.
  5. Not recognizing what has happened as sexual assault.  When people are abused, it isn’t always immediately clear to the survivor that what happened was assault.  This is especially true when survivors are children or when abuse happens in a relationship context.  Often abusers are very kind and meet the survivors needs in some ways, while simultaneously being abusive in other ways.  This confuses the survivor and leaves her struggling to understand and define her own reality.  Also, some people (children for example) literally lack the vocabulary to define what they have experienced.
  6. Not having the option to tell.  For example, not knowing that reporting is an option, or not having a safe person to tell.  Or not trusting anyone enough to tell them.

This list is not exhaustive, but is meant to illustrate some of the complexities related to this topic.

When I was abused as a child and teenager, I neither told nor reported.  I didn’t tell anyone because of a combination of the reasons above.  I didn’t have the words, I was confused about my relationship with the abuser, I didn’t know reporting was an option and most of all I feared judgment and had deeply internalized shame and guilt about what had happened.  I blamed myself.

As an adult, I didn’t report because I was confused about my relationship, because I minimized the abuse as “not that bad,” because I disassociated and coped with self harm, because I had a mental health diagnosis I feared that I would not be believed, because I had children with the abuser and other reasons.

When I was assaulted single times by perpetrators I was not in close relationships with, I didn’t tell because I was ashamed.  Because I felt like it was my fault because I agreed to go with them.  I didn’t want to face the stigma with people I knew and because I worried people would not believe me or would judge me.

In the end, in all the situations I have faced, I have eventually either told, and in some cases, told and reported.  Reporting sometimes felt necessary for various reasons, including protecting other potential victims and attempting to receive external validation within systems, that the abuse actually did occur.

This blog is a way of telling my story and encouraging, or showing, others that telling is an option.  There may be a stigma attached to surviving sexual violence, but there are also communities of survivors and allies out there who will believe and who will validate.  There are safe people.  There are people who believe survivors.

Believing a survivor may seem like something trivial, but it makes all the difference.  Believe me!

P.S I mainly use the word “woman” and the pronoun “she” when describing survivors because the majority of survivors are women and gender non-conforming folks, and the majority of perpetrators are cis-men.   But I want to validate that survivors and perpetrators can both be any sex and/or gender.