Meandering Michele’s Mind: What We Want Non-PTSDers To Understand
Thursday, November 19th, 2009 • Uncategorized •
Last night I spoke about post-traumatic stress in a forum of military wives in a program on www.Notalone.com. They wanted to understand the mindset of their PTSD spouses. We covered many things, including the PTSD fog, rage, frustration, depression and — the top 5 things you should never say to somone struggling with PTSD!
Many times the conversation turned to how hurt these veterans’ wives were by the behavior of their husbands. The coldness, the distance, the anger. The women — who, I have to say, were trying so hard to be helpful — were reeling from the unkindness directed at them.
As PTSDers, however, we know that rage is often misdirected. We rage at who stands in front of us because we can’t rage at PTSD itself, or at the perpetrator of our trauma, or even our own selves.
In our PTSD state we don’t often (ever?) stop to think about how our behavior affects those around us. Certainly, in all the times I raged against the fog and dissociation, the past and how it haunted me — plus all the other daily symptoms I struggled against – I never reflected on how this rage might be affecting the one person standing by me. Which started a bunch of thoughts meandering my mind, about all the things I wish people had understood about me and PTSD while I was going through it.
These ideas have left me thinking it would be good to compile a list, from our perspective, of what someone should know when going through PTSD with us. If we all contribute we can design an overview of life from the inside that we can put on the Heal My PTSD, LLC, web site. A sort of how-to guide for understanding and interpreting our behavior.
Today in the comments help me put together a sort of manual for those around us by answering this question:
What do you wish people understood about what it’s like to live with PTSD?
(Photo achknowledgement on Flickr.)
Tags: Meandering Michele's Mind, military, Notalone.com, post-traumatic stress, ptsd, spouse
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1. It’s not you it’s me.
2. I cannot always control the symptoms
3. All sorts of weird stuff can trigger me and I won’t always know until it does.
4. I don’t like seeing the people I love in pain because of how I am and that can make it worse for me.
5. I don’t want to be treated like a fragile thing. Treat me like a man – no special treatment, no excuses. It’s what I need.
6. Sometimes I cannot cope and just need space.
That’s probably a good summary from when things were bad for me now some time ago.
I really wish I could truly get other people to understand the symptom of ‘foreshortened future’. One day I can talk about holiday plans a month away. Then today, I can’t. It’s as if a black wall has come down three days away from now (or three weeks from now or three minutes from now) and anything beyond it does not feel like it exists. Or that I will exist past that point. Anything beyond the wall is surreal and unconnected. Making plans outside of the wall is confusing, frustrating, and painful. Try me tonight, or tomorrow, or next week. The wall moves. My husband is going nuts with it – but keeps trying!
Blue Morpho
http://www.anxietyland.blotspot.com
Blue Morpho:
Fantastic point and I forgot it. “Tomorrow” is like forever and “Next Week” unthinkable. Even now I find that sometimes planning for things more than a week in adavance makes me nervous.
At the moment I’m really pleased because I’ve made plans for December and did it in October.
When things were bad I used to telescope time down into THIS second, THIS Minute, TODAY, THIS week and so on and anything beyond that time interval did not exist for me; was unthinkable.
I’m now at the stage where I can plan for things several weeks in advance and that feels nice. It’s taken a lot of work to get here.
I spent a long time with “I’ll just get through Today” and “that’s another day that I’ve got through”.
When we say, “I don’t know,” it really means that we don’t know. Many times I can’t verbalize what is in my head or I cannot describe how I feel. I feel kind of blank.
We’re not trying to frustrate anyone. “I don’t know,” is the truth – frustrating – but the truth.
When I’m triggered, I need to work out, get quiet, be alone. These things allow my body to re-calibrate and I get through it. There are no shortcuts. When triggered, I cannot think the way you do.
I wish people understood that I get frustrated with the uncertainty and unpredictability, too. I also wish people understood that PTSD is not malingering!
Anger to me isn’t the same anger to others. I get combat anger, seething, white hot anger. Don’t try to rationalize it, just know its there and leave well enough alone. When the fog hits, piling more demands on me further shuts down productivity. I certainly appreciate being given the opportunity to work through it in MY way. Uneducated opinions do little more than raise my intensity. Sometimes I feel like a big dangerous baby, my emotions are all over the place. After the tears I usually feel release and can start heading out of the fog. The more I come full circle with my emotions the better I feel on the up side. I find that I am little stronger each time I cycle. But I am wise enough to know it will be back and I will be waiting, a little stronger and a little smarter. I may not be able to control it, I hope to be able to shorten the duration. One victory at a time. I lose battles but I will win the war.
Jason
OperationPTSD.com
1. I don’t know what all of my triggers are;therefore, it’s impossible for me to avoid them all.
2. Routines help me cope. Having everyone stick to their routine, as much as possible, has positive impacts on everyone in the family.
3. When triggered, I need something mind-challenging to distract me, so I can bring myself back to the present. If left alone, I’ll obsess about it, and allow it to suck me in. So, if I tell you I need to work on an evening or a weekend, let me. I find work, even when it’s very stressful, to be my relief valve.
4. Listen to me when I advocate for myself. When I tell you I have PTSD, and certain things / procedures are difficult for me, believe me, and respect my boundaries.
5. I’m still me. I’m a little edgier, a little more anxious, and a little more irritable, but I’m still the same person I was. I’m just “more” now than I was.
@Everyone — Thank you all for your comments! I’m working them into a new page for the web site. It’s time to start bringing awareness to the internal PTSD experience, not just the external symptoms everyone can see.
1. Don’t tell me or suggest that I need to “get over” things, rather understand that I need to work through things. Don’t assume I automatically know how to do this either.
2. Not only do I not know all my triggers, sometimes I don’t even know I’ve been triggered.
3. If you ask me if I’m okay and I reply yes and/or seem distant or unable to put something into words- it probably means just that. Don’t take it personal.
4. I’m learning how to set healthy boundaries. Please respect them, even if they seem insignificant or don’t make sense to you.
5. Living in the now, isn’t easy for me. For you, it’s like riding a bike, once you learn you never forget. For me, it’s like being expected to ride without ever riding or having any help or practice. Please understand that this along with many other things I’m learning for the first time, be patient.
6. Please don’t draw attention or question if/when I need to take anxiety medication and don’t ask me why either. It usually only makes me feel worse. Don’t assume it’s you, in fact it probably has nothing to do with you.
7. Sometimes I may seem frantic, going from one project to another. What I’m really doing is trying to find something creative to bring me back into the present. What worked yesterday or even an hour ago may not work right now.
8. I’m spending as much energy trying to stay in the now as you do during a 1 hour intense workout. Both are exhausting.
9. My anger/rage is probably hard for you to handle, how hard do you think it is then for me to? Then throw in the factor of not yet knowing how to handle it in a healthy productive manner.
10. PTSD is a disorder of avoidance. Most of the time I don’t even know I’m avoiding something or someone until after the fact. It’s a process and it does not mean I will be this way forever.
11. PTSD, at times feels like it defines me, it however does not. I struggle with this daily, but it will get better.
12. Acknowledgement. Help me celebrate my small successes along the way. A simple, “I’m proud of you” or “Good job handling that” will suffice.
I hope these help you Michele.
@Shaula — Fabulous list! Thanks for adding it. Many great tips and honest experiences, all of which help those who don’t have PTSD understand those of us who do.
Excellent lists!!! So well stated. For me, here’s what I told someone at church who was frustrated with my blank spaces. “Unfortunately in my current condition, it means “All circuits are busy w/ security concerns, please contact the system administrator (God) or try your call later.””
@Valerie — I love it! That metaphor puts things in terms anyone can understand. There really needs to be a PTSD manual for both survivors and caregivers, and then the general public!