Seeing things.

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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.

Don’t judge me. I’m coping.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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