Leisa Irwin

Explaining the symptoms of PTSD or C-PTSD

Author’s Note: It took me over a month to write this because simply describing what it is like to struggle with the symptoms of C-PTSD resulted in triggering fear, anxiety, and flashbacks.  I persisted with this narrative because I want people who have never experienced the complexities of this illness to have a better understanding of what someone with PTSD or C-PTSD might be trying to manage.  If you personally struggle with anxiety, have PTSD or C-PTSD, or you are triggered by descriptions of fear or trauma, you should not read this.  It is hard to read. It was hard to write.

In the car today, a good friend (I rarely leave the house without someone with me) asked me if I had looked at the condominiums in town for potential rentals when I was in the middle of my housing search last year.  I had, and he asked what I had thought of them and why I had not opted to live there. I told him that the basement in one I looked at

had scared me. He asked what I meant. I told him that the basement was a “predatory basement.” He looked confused and asked, “Was there a walkout basement? Were you worried about someone breaking in?” I struggled with how to explain the unexplainable.  Would he think I was crazy if I told him the truth? Was it possible to explain how my brain twists even the most basic things in life and makes them feel like a horror movie? I decided to be honest, and I said, “I could imagine someone chopping people up into little bits in the basement.” He gasped, “Why would you say something like that?” This is the trouble with PTSD, nightmares, flashbacks, and cognitive distortions.  Intellectually, I know it doesn’t make any sense.

I can’t prevent the fears from taking over my thoughts. The first time this happened while driving terrified me.  I was in my minivan in the evening and the lights from another car pushed shadows through my vehicle. The shadows came alive. I was no longer alone in my car. My heart raced. I was trapped and someone or something was going to hurt me or kill me. I couldn’t catch my breath. I couldn’t remember where I was going, or why I was in my car.  Instinct kicked in and I pulled off the road at the next exit. Flight. I stopped at a gas station, and parked under the hood of lights next to a gas pump. I took a couple of deep breaths. I repeated “it’s ok, you’re ok, just breathe” over and over again in my head. The gas station had another set of triggers. People. People I did not know; variables that were outside of my control.  I walked in, still slightly dazed, and bought myself a cup of coffee.  This is not a once-a-year event; I have experiences like this nearly half of the time that I am in the car alone.  I don’t drive much anymore. If I have to go somewhere, I do everything I can to find someone safe who can ride along with me or to drive me wherever I need to go.

A few weeks ago I did something I had not done in a really long time.  I went to the grocery store by myself.  I drove myself there, three miles from my home.  I sat in my car for about an hour watching the cars in the parking lot.  It was nearly 10 pm, and the parking lot was mostly empty.  I paid attention to how long people were in the store; from the time they got out of their car to the time they got back into the car.  I counted cars. I counted people. Twelve cars. One car with two people. Three cars with one person each.  Eight cars with an unknown number of people – maybe employees at the store. I looked through my grocery list which I had typed on my phone. I re-arranged the list to account for where I expected items to be located in the store. Produce first. Meat and bakery next. Then dairy. Etc. I started my own personal self-talk in my head. You’ve got this. This won’t take long.  You can leave anytime you want. You don’t need to buy everything on this list. You can leave the cart in the store, walk out, and drive home if you have an anxiety attack. Thirty more minutes of self-talk and examining my list. I took the first step into the store and felt some small sense of safety knowing that the shopping cart would keep people at least a few feet away from me. I could even use it as a weapon if needed.  Yes, I thought about pushing the cart into someone if I needed to escape.

I made it about 20 minutes in the store before I started to feel dizzy. Beads of sweat started running down my face.  I had goose bumps on my arms and the back of my neck. I felt cold and clammy. I thought I might pass out. I was in the aisle with the chips. I told myself to walk to the front of the store. Just walk. Hold on to the cart. Walk. I repeated the instructions. Breathe. Walk. Breathe. Walk. At the front of the store, I pushed my cart towards a cashier. I managed to speak.

“Can I please leave my cart here? I will be back in a little bit. I am having an anxiety attack.” The words just came out. I wasn’t sure I was making any sense.  “I am just going to my car. I will be back. I might be gone for a while, an hour, or a while. Please let me leave my cart here. I will be back.”

I ran out the door and made it to my car. I spent over an hour in my car. I tried to process what had happened.  There had been a human in the chip aisle with me. A male human. He hadn’t done anything to illicit my fear. He simply existed. Was he the trigger for this panic attack?  I had been feeling the effects of anxiety before I had even entered the store, so perhaps this one added variable had pushed me over an edge. I cried in the car. I felt like a failure. Why was it so hard to go to the grocery store? What was wrong with me? Why couldn’t I just be normal?

I looked at my list and contemplated just driving home. I only had six or seven items left on the list.  I already had most of my groceries sitting in a cart ready to check out.  There were only 10 cars in the parking lot. I hadn’t seen any new people arrive, but a few left. The human from the chip aisle left. He did not seem to be aware of my presence in my car.  I went back in to the store. The cashier I had spoken at wasn’t in sight, but my cart was just where I had left it. I made my way back into the maze of aisles to find my last few items. I missed the laundry soap aisle and I couldn’t get myself to turn the cart around and go find it. I struggled to check out. I was embarrassed by my earlier departure from the store. The cashier didn’t mention it, and I didn’t make eye contact, avoiding any potential looks. The cashier helped me bag my groceries, which was rare for this store, but I was grateful to be able to exit quicker. I made it home. I was exhausted. Bone tired, exhausted. But I did it. I haven’t been able to go back. I am afraid of failing. I am afraid that there will be too many variables. I am afraid that if I try, but I don’t get through it, that it will set me back even further.

Nighttime is the worst; closing my eyes, and praying that I will fall into a peaceful sleep. At the very least, that I’ll be able to tell myself in the middle of a nightmare that it is “just a nightmare,” and not real. But most of my nightmares do not work that way. Usually I am trapped in a service tunnel that weaves through a mall to give employees access to the loading docks and dumpsters. Sometimes I am outside of a mall near the loading dock itself.  I am being chased. Guns are being fired. Someone grabs me as I turn the corner just as I think I am about to get away.  Sometimes I get shot, and I am lying in the dark tunnel, dying. I had once been told that you can’t die in a dream. I assumed that meant that I could not dream anything that resulted in my own death.  Now I know that is not true.  I have died in my nightmares. I have come to terms with dying in my nightmares. It is better than the fear leading up to the death. Unfortunately dying in a nightmare does not end the nightmare. Instead it recycles itself and I find myself making different decisions as I try to escape. It’s like a “choose your own adventure” book running in my head with all decisions leading to more and more fear. Many times I can’t fall asleep at all. Or if I do, a nightmare wakes me up, and I can’t fall back to sleep. Sometimes, as I lie awake in bed, trying to fall asleep, light from a passing car will slide across the walls in my room. In those moments and the minutes that follow, the shadows move, the sounds of the house are louder, I think I can hear someone breathing, or walking, or moving in the house. I tell myself it’s the cat, or the dog, or the refrigerator cycling. But my heart races. I have to get up. I check the locks on the doors. I play a game on my iPad. I try to distract myself. As the sun finally comes up, I feel some relief.  The number of variables decreases when it is light outside. There are still a great many things that frighten me, trigger flashbacks, or cause an anxiety attack, but with daylight, there are more visual checkpoints, better sightlines, and a higher number of potential escape routes.

I did not write this to elicit pity. I tried several times to write about a one of my recurrent flashbacks, hoping that if I could put words to it, I might have better success processing the triggers. I was unable to do it. That alone speaks to the challenge of treating mental illness. Each person fighting this battle has their own set of experiences and triggers. Hopefully they have, or are in the process of, developing successful coping skills. I speak from experience when I say that the process of learning how to manage or cope with this illness, or others like it, is slow and exhausting. There is no specific road map, and no set timeframe to heal. Instead, I fight every day for something I believe is possible: life without constant debilitating fear, a life where I can engage in a meaningful way with others around me and where I can find some level of joy in my day. And, if the only value in writing this is that one more person can understand what a loved one or friend is experiencing and that knowledge helps either of them, then it was worth writing.

23 comments

  1. Thank you for writing this. My husband has similar issues from adverse childhood experiences. It is less severe but our life is difficult. Anger outbursts, hyper vigilance, needing to control his environment, not able to be around people, having problems at work, not being able to relax and experience happiness. It is hard for both of us and my son. I am studying clinical mental health counseling and recommended he go to Eye Movement Desensitization Reprocessing (EMDR) therapy, started by Francine Shapiro. Other therapies that work with trauma are Pat Ogden’s somatic therapy and Peter Levine’s somatic experiencing. These therapies work! If you can read also Bessel Van Der Kolk’s The Body Keeps the Score, it is helpful in understanding trauma. I hope more people find out about these therapies and how they can help process trauma and recover from it. Have hope and persist! Everyone needs to have the opportunity to be happy and be fully functional.

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  3. This was really well-written. I completely relate to the paralyzing symptoms of PTSD. I have groceries delivered. I struggle to leave to house for therapy. Sometimes I can’t even move because of the fear. It’s very difficult for people to understand, and you described the terror perfectly. Thank you.

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  4. Please look into Neurofeedback. I am a CASA, and the youth I am a CASA for had terrible anxiety from 0-12 horrible trauma. Her anxiety has been significantly reduced by using Neurofeedback. The system she used was “Neuroptimal” which is non-directed feedback. Very gentle.

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  5. You are an inspiration to all of us out there with C PTSD who are too afraid to even drive or be in public on our own. Writing can be a an amazing outlet. My blog focuses on the emotions associated with C PTSD- years, even decades after trauma. It can be so frustrating when others don’t understand that certain sensory inputs make us feel like we are dying inside. Sometimes I don’t even understand why a certain stimulus is a trigger… It’s like my head, hands, and feet are disconnected from the rest of my body. The physical nausea and dizziness that overcomes me can be debilitating. There are so many of us who have struggled in silence for too long. I am not alone. You are not alone. None of us are alone. 💗

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  7. Leisa, thank you so much for sharing these experiences. My daughter suffers from PTSD and anxiety attacks. Sometimes it is a struggle for me to remember what I may understand cognitively, but not in my gut. This leads to suspicion, blame, and pushing. “Can’t you just . . . ?” and “Why could you do that but not . . . ?” Your sharing has given me another layer of understanding, and a powerful one. My daughter would have been able to vocalize her experience to me in such length and detail, nor would I want her to put herself through that. But I feel that you have done so for her. Please know that this will help me and others. Thank you.

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  9. Dear Leisa,
    Thank you for your courage! It’s so rare to hear such unedited honesty online. I hear in your story that sense of hypervigilance that follows me around as well! It is a relief to hear someone else share online. You are not alone!
    Lorraine

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    • Lorraine, I think there are far more people like us than most people realize. And perhaps, there always have been. The internet allows us to learn about each other, and from each other, in a manner that wasn’t available in the past. I might not be able to leave my home on most days, but I am so grateful for the ACEs community because I can make connections with people who actually understand the struggle and don’t judge me for my symptoms. WE are not alone. 😊

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    • Debbie, thank you so much for this resource. I’m so happy that you were able to get help. I am in counseling or group 5 times per week. Three of those sessions are teletherapy because it’s so challenging to go anywhere. But I also know that there is great benefit in being able to be with people (in person) who can understand and provide support. And it helps to know that Recovery, Inc. has been a successful resource for someone else. I hope they have meetings in my area!

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  11. Leisa Irwin, thank you for taking the time to try to explain. This is will helpful to people who are there but cannot articulate what they’re feeling. I applaud your courage, and I’m sharing this in the hopes that it’ll help many others. You can turn PTSD into PTSG–Post Traumatic Stress GROWTH. I know, because I have. You can do it!

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    • Thanks for sharing this Rhonda. I appreciate it. I know that I barely skimmed the surface of the struggles of PTSD, but I wrote about a few situations where I can truly remember a time when I didn’t feel or react the way I do now. I have shared this with a few people in my life too; those who knew me back then and who simply can’t understand the person I have become, (in reality…the symptoms I have now.) In many communities, it’s still the cultural norm to think about mental health as behavioral choices. I believe that we will continue to see growth in our micro and macro communities around the topic of mental health. And, I think that we can increase the pace of that growth by opening up more levels of dialogue. Hence, I may not be as courageous as it appears. I might just be desperate for people to understand. 😊

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  14. Hey there ma’am…I am sorry you have these attacks….I am 42 years old, male, and suffer from severe ptsd…Going out in public is so bad, I start feeling the anxiety days ahead…This has not always been this way…It has gradually become worse with age, until you have where I am now…I live in the middle of nowhere…There are only a handful of people living within 10 miles of me…I have not left the house in over two months, and Lord willing, next month it will be in over three months…That is if the person getting my monthly groceries goes again for me…I start having trouble sleeping 2, 3 even 4 days ahead of having to leave the house…I start coming up with valid excuses as to why I cannot go…Sometimes the anxiety gets so bad, that I can actually make myself sick….Which is always a blessing, because then I do not have to live with a)the guilt of lying b) the fact that I am a 42 year old man, that was once built like a brick out house, that now can no longer be around people without sweating so bad I get soaked in minutes, shaking, unable to swallow…Then my muscles begin to work against me…If I do not get home fast enough, I will literally lose the ability to walk…Now that is outside the house…Inside there are many other events that lead straight to an attack…a) the phone ringing (I cannot tell you how much the phone ringing really just pulls me right out of my skin, and sometimes cannot recover for days) b) noises as I am trying to fall asleep ( I live in the country, and 99% of the time it is quiet as a church, but if the wind starts blowing, no telling the creaks, cracks, moans, groans, and other noises I start to hear) c) someone comes to the door unexpected ( I can know you are coming over, and still go straight into a full blown attack when you knock) My own mother will not listen to me, calls 15 – 20 times in a row angry I won’t just pick it up, and there are times I just can’t….She doesn’t get it though, she even comes over and if I don’t answer the door fast enough to her liking, she begins knocking hard on the windows until I come out….THIS after I have explained, yelled, talked, and begged for her to follow even the most minor boundary I set up….And not even two weeks ago, I was in so much pain, (also fully disabled with ankylosing spondylitis…auto-immune disease that started when I was 7, now I have 4 disc’s fully exploded, up to 8 pinched nerves at once, including the sciatic, no cartilage in any of my joints, with severe bone damage in my hips, knees, ankles, hands, fingers, and toes….) that I was in bed for a mid day nap to try to take my mind off the pain…My mother gets a hair and decides she is not going to stop calling until I pick up…She literally let the phone ring for 10 minutes, before I had to CRAWL to answer the phone, and she has the gall to ask what my problem is….ugh….So yeah…I understand ma’am….totally get it….

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    • I’m am so sorry that you are struggling like you are. I’m sorry that I’m struggling too. I so wish for a magic wand that would truly heal the neural pathways in our brains with a single wave. But I know that healing is a much slower process. I have little notes hanging around my home reminding me to breathe and to be gentle with myself as I work to rewire my brain. I don’t know your history, but for me, I had a series of closely timed traumatic events that led to some type of emotional collapse that broke down any self protection mechanisms my brain had built after living through a very traumatic childhood. I don’t know the terminology that practitioners might use to describe what happened. I just know how it felt – complete emotional devastation. My hope for both of us is that we have access to opportunities that allow us to take the steps we want to take in a protected and safe environment that gives our brain a different and safe experience.

      When I was reading the description of your mom’s behavior, the excessive calls, the loud banging on the windows, it led me to wonder what might be at the root of that. Is it possible that she too is struggling with anxiety, and that when she can’t reach you she becomes triggered? One of the things I have had some success with is having a list of things I do when I am activated. It doesn’t always work, but my list includes:

      -turning on some music and singing out loud
      -watching funny cat videos on YouTube
      -breaking a 12×12 ceramic tile into small pieces to use in a mosaic someday
      -watching one of the live cams on explore.org
      -alphabetizing my books… (I go back and forth between alphabetizing by title, by author, by title…)

      There are a few other things on my list too. My point was that maybe your mom needs to create a list of things she can do when she can’t reach you. Something to help her get centered within herself, so she isn’t feeling so desperate to reach you?? And please know, I have no idea if your mom is dealing with symptoms of anxiety or not, and even if she is, if this will help her. But it might be worth having a conversation with her at some point… because the steps she’s taking to reach you at this point, sounds like it’s really hard on you.

      Thank you for sharing your experience with me and the readers of ACEs Too High. I truly believe that it helps to both write about our feelings and experiences and to read about others experiences. I know for me, it helps. I hope it was helpful for you too.

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