Saturday, January 26, 2013

The alone-ness of PTSD.

The past two weeks have been full of emotions.
Most recently, I went with a friend of mine to have a medical procedure done. The procedure itself was not a huge deal. NOT fun. Definitely not pleasant for anyone. But throw in a little PTSD, and what is mildly uncomfortable for others becomes a traumatizing moment.

I came back from that experience angry. Anger confused me. Angry at what? or who?
Sad and angry that she is having to go through any of this? Yes. What else?
Angry at the fucked up person that abused her? Hell yes!! And there's more.



A week ago, I went with K to her doctor's appointment at the Huntsman Cancer Institute. I don't know how it is other places, but every person who goes through cancer deserves to be treated the way they treated her. Compassionate, professional, knowledgeable doctors and staff. At least two staff recognized her walked up to her in the waiting room to give her a hug and talk to her. The doctors had all been working together and reviewing her scans and files to come up with the best solution for her cancer. BJ and I were in the room with her, plus three people conferenced in on the phone, plus several others who would have been there if she had wanted them there. She was surrounded by amazing and loving support.

I was so glad to see K had all those people and resources. I wish she didn't have to go through this. I love her, and would do anything I could to be helpful, and I was only one of many.


A few days ago, there was a funeral for three beautiful people. The family they left behind were surrounded by love. So many people willing to help, bring food or flowers or heaters, drive shuttles, decorate, offer a hug, a kind note, take pictures, and more that I couldn't even see. It was beautiful to see all of the love, the shared sorrow, and the support.

No one should ever have to go through that kind of loss. No amount of love from people could take the pain away, but there were so many that were willing.


As I sat in the ER with my friend, she tried to explain to the nurse that she had major PTSD.
"What? Were you assaulted or something?" (Just in case anyone is wondering, NOT a very helpful way to word that question.)
My friend asked the doctor for something to calm the anxiety, he offered a small dose of Ativan. He didn't ask what she normally took. He didn't stick around and listen when she tried to explain that Ativan doesn't do much for her.
Twenty minutes later, when the nurse asked if she felt the effects, she said, "No."
The nurse went ahead anyway, and when she saw my friend's tears, said nothing, finished the procedure and ran from the room.

I understand that doctors and nurses have a lot on their plates. These people meant no harm. I understand that my friend probably wouldn't want a room full of support at that moment. (I'm not sure she even wanted me there. I just told her I was coming... and then told the people at the front I wanted to see my sister. She didn't kick me out, so probably okay that I was there.)

It's just... I feel angry and sad that someone with PTSD has to go through it all SO alone.

Typical for me, I wasn't able to put to words the feeling when it was me. Watching someone else go through an experience that is similar to my own, I feel sad for the alone-ness of PTSD.

People don't understand. Doctors, nurses, and professionals don't get it. Most friends and family can't understand what it's like. They can't understand the pain, the confusion, the mixed up ideas, the flashbacks, the nightmares, the loneliness, the depression and anxiety, the guilt, and the shame.

So much shame associated with the abuse and the PTSD itself. I felt like I couldn't let people know what was going on. I didn't want them to think I was crazy, attention-seeking, broken, or screwed up. I couldn't handle the stupid things people would say (Things not to say, Stupid things people say)  - it was better to be alone than to have to take care of someone else when I was hurting.

Flashbacks were so personal and so frightening, I didn't want to go through them alone, and I didn't want to have anyone else around while my body was going through that. I was lucky to have BJ. He seemed to understand what I needed, and just sat with me.

Sexual abuse is so personal, so perverse, and so painful... It's hard to talk about. (Sometimes impossible to talk about.) Even now, I don't like talking about it. I still feel very raw and afraid when I tell someone I was molested or raped. Just those words make me want to crawl in a hole.

(And recovery means you stop talking about it... Why is that?)


I shared some of these thoughts with BJ.
He said he wished he had money like the Huntsman's had money.
He would start a big complex just for PTSD research and treatment. There would be doctors of all kinds who were trained in their specialties as well as in PTSD. The place would feel kind and compassionate, and they'd have an ER. There would be therapists, staff, and caseworkers. 

It would be big enough that the community would get involved. There would be high school choirs singing or guys playing piano in the lobby. And home-made stressballs made by people in the community available to anyone who wanted one.

They would research the brain, and how to overcome the effects of trauma. And have cutting edge treatment and technology to give every person the best chance of not only surviving but living life to the fullest after survival.

They would have a place where someone could go when they couldn't sleep, because it was too hard to stay grounded AND sleep. Staff and therapists willing to just be with someone who is hurting that much.

Most of all, it would be a place where people wouldn't have to feel ashamed. Not of PTSD symptoms. Not of the abuse or trauma. Not of needing extra support or love or attention.

Suddenly, I wish I was a millionaire. I would like to be a part of creating that place.



Until someone has the money to create such a place, what can be done?
Is there anything that can be done, so that people with PTSD don't feel so alone?

I want there to be more that I can do. 

14 comments:

  1. I want to come to that place. What a safe place it would be. The thought of just being understood sounds wonderful. And having a place to sleep and be gounded? Why doesn't this exist?

    This is truly a fantastic post. Thank you for writing it.

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    1. :) Thank you!
      I think this is one of the reasons that CFC felt so safe. But we had to be so sick to get that kind of understanding... if there was such a place that didn't require you to also be nearly dying (or headed in that direction), it would be awesome.

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  2. oh my Jen.. I just love you. And I have told myself so many times over these last couple of days how grateful that I am that you stuck with me this week. That, even though we haven't seen each other in person in a while, that you made the trek to come and sit with me at the hospital.
    I remembered that I meant to ask you how you got back into my room, because I didn't tell them in triage that someone was going to be coming to be with you, but in the mess of that procedure I forgot. I love that they passed us without question as family. I can't thank you enough for sitting there with me. And I know how awkward that situation could have been for you... You, as always, were such a trooper.
    And if being with me while I tried not to come unglued in that hospital room, you came back the next day to laugh at Pitch Perfect with me.
    (I am trying to figure out how to add this stuff to your Hierarchy picture.)

    I also love how involved and supportive that BJ is. He only continues to blow me away at how wonderful he is, how he truly genuinely wants you and other people who are hurting to feel loved and cared for. How he comes up with ideas like a PTSD complex. Sometimes I think that he just can't be any better suited for you... but then he proves me wrong :)
    And other than being your literary agent for the Jen and BJ memoir/story, I will gladly devote myself to your PTSD treatment endeavors.
    I love you much friend.

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    1. Although I totally want you to keep working on your craft project, I really want to see it. Maybe we can hang out again soon just so I can see your artwork.

      And I agree, BJ is kind of amazing. He is one of the very few people who understands, but hasn't gone through it himself.

      Keep pushing me to write that memoir/story. It's one of those things I want to do, but will never do without a lot of pressure from outside myself.

      I love you!

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  3. I wish that there was enough money that every major city had a place like that, and that smaller cities had offshoots, that could transport you to a bigger one, if they didn't have the resources. And instead of an ambulance, they would take you in a comfortable van, with someone sitting next to you, holding your hand, listening, and talking if you need it.

    I wish our society cared about PTSD survivors enough to create such a place!

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  4. Thank you for opening a window into another world. I have people in my life with PTSD, and this helps me understand a little better. These are good strong words.

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  5. Okay so I don't know you, but I know OF you through Steph and now I am devouring your blog instead of writing papers.
    First of all, I want to thank you for being with Steph this week. It is something I wish I could have done but obviously being on the complete opposite side of the country (I live in CT) makes it a tad difficult. I am glad she had to you there. I have definitely heard some pretty wonderful things about you, but this tops the list. Okay I am going to stop sounding like a creep now ;)
    I also want to thank you for writing this. The way professionals in the medical field treat PTSD horrifies me. There is so little concern for the emotional well-being of the patient. At least with me and my trauma, I spent most of my life in silence thinking that what was happening to me was okay. And to be put back in that place where the patient's voice does not matter is re-traumatizing.
    I am in full support of your PTSD treatment ideas. There needs to be more support for anyone who struggles with this. Nobody should have to deal with this alone.

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    1. :) I'm pretty sure you just made my day... devouring my blog instead of writing papers is one of the best compliments ever.

      I hadn't really thought about how traumatizing the medical side of things can be. I knew I was traumatized, but figured it was just me... But having no voice, and having to submit yourself to whatever they say they need to do, and feeling confused and hurting, but also thinking you should be okay. It's hell!

      I'm kind of awful at going to the doctor and the dentist, but if I didn't feel so crazy and alone, I would go.

      Somehow, we need to figure out how to make BJ's idea happen.

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    2. I totally agree! I want this to happen. I can run the East Coast half ;) It is such a brilliant idea and the sad thing is that it hasn't even happened on small scale yet. Trauma and PTSD should never be a lonely experience. And there needs to be more of an understanding of what it is and how people can help.

      I want this to happen. Mostly, I want professionals to have the knowledge and compassion to advocate for a change like this.

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  6. Oh how I wish that place were real too! It could help so many people. Maybe one day a person with vast amounts of money will build it.

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