An open letter to someone looking to help a loved one with ptsd

Hi,

Since you did not post anonymously and wanted to get a hold of me I won't publish your comment but will respond to your email.  If you want to repost anonymously, you might get some help that way too, so if it comes through again anonymously I'll publish the comment.  I never had Electro Convulsive Therapy (ECT), and have heard nightmarish stories about it, even in the new and improved version.  If it is not having a helpful effect, please reconsider it!

First off, sorry to hear you and your wife are having such a tough time.  When I went through the worst of the flashbacks and other stuff I was very difficult to deal with and a real burden.  I am fortunate my wife recognized what was going on as similar to what happens to battered women (she had done some work in the domestic violence field) and people who have been abused, but we had no idea when it went down what PTSD or flashbacks were.  It was incredibly frightening...I thought I had just gone crazy.  That is why I publish the blog, so that if people are hunting around they will know that what is happening is not unique and that there are ways through it.  The only way out, unfortunately, is through.

It put me out of work for 1 and 1/2 yrs, and I had to go to inpatient.  We basically maxed out credit cards and borrowed from friends and my wife's family.  Insurance would not cover anything.  I looked into but did not get social security for a disability, we were too busy with the symptoms to be able to go through with that when it actually could have helped.  My family of origin was in such denial they did not help and went on a sort of in-the-family PR campaign to discredit me and my wife.  I don't talk to them at all any more.  That whole things was weird, because the immediate causes of my ptsd were not directly anything to do with family other than raising me so I couldn't recognize psychopaths when I encountered them.  We had ok credit but not much income at the time and basically maxed out the 0% introductory offers and juggled them around for a couple of years before paying them off.  No fun, but it worked.

If you can go that route, do careful research on the place.  I went to Life Healing Center in New Mexico.  Some people, like me, have gotten a lot out of it, others, not so much.  It did not cure me, but it did give me enough tools to manage the worst of the symptoms and set up a structure of recovery, which slowly happened (with lots of work from me) over the next five years.  I have not had a flashback in bout five years, but I know that seems like forever from the other side.  With help though, it can and does get better.  Without help it will not ever get better, and would have resulted in incapacitation, institutionalization, and death for me if left untreated any longer.  It kills lots of people through suicides and addictions, and the stigma prevents the experience from helping others.

About the careful research, look at the comprehensive list of treatment centers.   You might contact Life Healing Center and ask where to go or what you can do.  They were supportive when we called.  The Sidran Institute that is listed at the top of that page serves as a clearinghouse of info and advice on getting help with PTSD.  They have a great help desk.  I would also check "how to choose a therapist" on the blog.  While setting up longer term plans, try to get short term support in place.  If Kaiser will pay for therapy, try to get a referral for PTSD.  There are lots of positively harmful mental health professionals, I would say the majority of them, so if you get a bad vibe with one try another.  It is not you!  Other people I know on Kaiser have managed by trial and error to keep trying the therapist they assign and if that one does not work ask for another.  Make the first session an interview.  You may want to attend with your wife, because if she is now like I was a few years ago, I would pick abusive therapists!  Ultimately though it has to be someone she feels she can work with, so you can only support, not do it for her. But she has a right to get appropriate treatment specific to her case, and might need help to do that.

Kaiser may want to do an economy one-size fits all solution, but you have the right to get the help you guys need.  Especially be careful with psychiatrists prescribing meds.  If you get a sense they are just prescribing this week's pharmaceutical company offering and not listening to you either before during or after you start on meds, clear out fast!  I'd say psychiatrists approach closer to 90% incompetent.  I really had to hunt to get a good one that would actually listen.  My wife helped me find a good one, and the "how to pick a shrink" page is what we learned about how to find one and interview her or him.  Meds are an important part of my recovery today though.  But if one gets overmedicated, it is just zombifying, and if your wife gets on the wrong meds and the psychiatrist does not listen, it is horrible.

Also, check the laws in your state.  In my state, major depression, which I had from the PTSD, qualified for more intensive treatment and the insurance company had to pay for unlimited sessions, not just the usual 24/yr or whatever.  The insurance company of course will not tell you this, so check the laws and the fine print of your policy on it.  I went twice a week sometimes when things were just starting to get better.

If there is addictive behavior involved, tread very carefully around 12 step programs.  They have little to no understanding of trauma issues and even if it works for the addiction, like it did for me (I went to 12-step groups for 16 years), the cure can be worse than the ailment, and charlatans and @$$holes abound.  That is not to say don't use it as a resource if it works for halting the addictions, because the addiction, particularly to drugs or alcohol, will prevent any progress in recovering from the ptsd.  Just don't drink the kool-aid that says it is a cure-all and if you are not happy joyous and free in 6 months you are doing it wrong.  That is positively harmful and very prevalent.  Get help with the PTSD elsewhere.

With that said, a number of treatment centers are incorporating trauma work into their inpatient programs.  The meadows in Arizona and the Caron Foundation rehabs in PA are two examples.  Places that work with trauma primarily often won't take a person with substance abuse issues until they have come through a rehab for that.  When I went to Life Healing Center I was already 16 years sober and had to do a bit of convincing to get in without having to go through another drug and alcohol rehab!  Without the sobriety, the other work is impossible.

I am forever grateful that my wife and my friends I had made outside of 12 step groups came through and stuck with me.  I did get better over time and returned to being a more-or-less fully functioning adult again.  It was (and still is) a long slow process, but things do get better.  My wife was for me when I was not, when I was hopeless, she supplied the hope, and we came out the other side of it fine after some couples counseling.  Don't underestimate the strain on yourself and inequitability of what is happening.  It is not fair that you should be stuck cleaning up trauma that you had nothing to do with, and Christian strategies of turning the other cheek and repressing anger will backfire, coming out sideways and destructive.  It is a tremendous strain to live with someone going through PTSD, to the point they have a name for it, secondary PTSD.  So please, if you are going to support your wife, remember that you need to take care of yourself ultimately too.  That can get lost in the cycle of crisis, but it is crucial if you are to be supportive and if the relationship is going to come through in the long run.  It can and does happen, even if it seems hopeless now.  Having come out the other side, it was an awful expereince, but once we sorted things out, with a lot of emotional work from both of us and short term guidance from a good couples therapist when we got stuck, we are stronger in the relationship than ever, and I owe my recovery in large part to my wife's unstinting support.    I'm not advocating martyrdom though, please be clear.  I had to work hard at my recovery and do a lot of work in restoring the relationship.  If I had not done that work, even when I saw no point in it, nothing would have gotten better between us.

I hope this is of some help.  I know PTSD is terrifying and awful, so please hang in there.  All the struggles and hardships paid off for us in the long run and I hope they do for you too.  I'll probably post this as an open letter on the blog without hooking it up to your comment.  Thank you for writing.

toxic relationships

Well, this started as a response to a bunch of comments but turned int my first post in a while, so thanks to the anonymous poster who made the comments referenced below.

anonymous said:

My story was a string of "moderately traumatic" events that left me feeling constantly on edge, ready for betrayal or chaos at any moment, completely in physical and emotional pain for years.

Yes, I know that feeling well, that there is no safe place, the world might give way under foot at any moment. Finding ways of being and places, even imaginary ones, that are safe has been a big part of recovery for me. EMDR, which I have been thinking of writing a post on for a very long time but haven't gotten around to it, was helpful in doing this. I started out with an imaginary safe place, but also learned to trust that loving and supportive network of friends, which has been a challenge, but also tremendously rewarding as far as recovering goes.

anonymous wrote:
The supportive, loving people I have new relationships with don't deserve to deal with my insecurities from the manipulative, destructive people in my toxic past.

I think awareness is a crucial first step. All the toxic people who were in my life surely had their own unaddressed trauma issues, I know this for a fact. I think perpetrators of abuse are traumatized people who feel entitled to take out revenge for their trauma on the world around them. Its their way of dealing with it, but it creates more trauma, passing it along to new people. Most traumatized people won't turn into abusers, but I bet 99.9% of perpetrators come from traumatized backgrounds. Its important to reiterate that this is not a fait accompli.

It is a slippery and seductive slope though. Most traumatized people hold it in til it blows up, which I did, or find constructive ways of dealing with it, which is what I try to do now. But when things blew up, I hurt those around me, the closer and more supportive they were, the more so. I realized this and it was a major incentive to get better so that I would not continue to have the stuff come out sideways and hurt the ones I love and who love me. I can see though, that had I just felt entitled to what I was doing rather than being appalled at it, it would then be but a short drive to perp-dom. So I have understanding, but no tolerance or forgiveness for abusers.

I am grateful for being able to break the cycle in my own life but it has come at great cost. My tendency was to buy into the perpetrator's version of the story and see myself as defective or the source of whatever problems they blamed on me. I promised myself when I was a little kid that I would not do to my kids what was done to me. My latest greatest abuser played into all my fears and insecurities (and ignorance about boundaries!) and after I got totally screwed over, the person convinced me that I was the abusive one (I hesitate to even write this for fear that whoever reads it will side with my abuser too!) by invoking what I had recognized as lies a previous toxic person had accused me of.

The latest, greatest one knew my feelings and insecurities about this because I told her all about them. Rather than realizing "wow, what a sick person, trying to justify her abusive behavior by flinging that stuff at me," I thought "well that's twice in a row...maybe I'm as blind as my parents were to their abusive behavior and just cannot see it." As a result, I decided not to have kids, because I took my childhood promise to myself seriously, and until I could see how it was I was being abusive I would do what it took to make sure I didn't pass it on.

This was my backwards sense of boundaries, where I thought they were to keep me walled off from doing harm from others rather than to protect myself from toxic abusive people. Years later, the person admitted I had not been anything close to abusive and that she made it up to justify her actions, but by then it was too late to start a family and the harm had been done. Because a life of traumatic relationships with everyone from parents to siblings to strangers to lovers, my belief in myself and my own feelings was nil. This is perhaps the greatest thing I have recovered in getting better from PTSD, my trust in myself as a basically good human being. I had to learn what most people learn as children, how to tell what's mine from what's not, and that has made all the difference.

a loving and supportive network of friends

In a comment to this post, anonymous wrote:

also maybe you just haven't found the right support group yet. There's nothing like sharing with others who have endured similar experiences

This is true, sharing with others who have been there, or who have other ways of understanding, is a tremendous help. If you look through the rest of the blog, you will see that my recovery has come a long way. I do have a lot of support but it is not formalized in a "group" right now and that is fine with me. What I do have is a loving and supportive network of friends and family of choice. Groups have served their purpose in my recovery, and I have done them in several different forms and may do more if I see an opportunity to get better by doing so.

But groups have also been fraught experiences for me. I've said enough elsewhere on 12 step approaches, but even in therapeutic groups, the nature of a lot of my trauma and its manifestations is often threatening to other male group members' sense of their own masculinity and they have often gone out of their way to not identify with me, distancing themselves as much as possible. From what I gather this is their issue, not mine, but I'm not there to have them play out their idea of what a man is by being hostile to me or undermining my sense of who I am and what I have been through. Its counterproductive and whatever the opposite of affirming is.

Here is what I do have though, a loving and supportive network of friends and family of choice. Most untraumatized people grow up with the family part and develop the friends part as a matter of course. I had to spend decades to learn how to do it, and it had to be with a new family of my own creation, not my family of origin. I was able to manage this by reaching out to people as people, not as alcoholics, drug addicts, or trauma survivors.. Some had some of these issues mind you, but I reached a point in my life where that no longer needed to be the primary basis for a relationship.

When the PTSD came on hard, I involuntarily had to lean on this network for all it was worth, and these friends and family were there for me and came through for me in ways that my family of origin and my old frineds, both as an active addict and as a person recovering within the frame of the twelve steps, did not. What I like to think is that I had gotten well enough to operate in the world of "earth people" -- normal folks, in other words -- as one of them, instead of identifying as an addict or a victim or a survivor first and foremost. One of the goals of recovery is to reintegrate into society as a useful member, and over the course of many years that is what I have done. I'm just a person among people. Like everyone, I've got my own unique history, and I act in some particular ways...for example, not drinking or drugging. But I am more or less just a regular person, as long as I take care of myself.

So anyway, when doing EMDR, I was having difficulty facing some of the trauma yet it was intruding in my life in the form of flashbacks, seizure-like things, hypervigilance, and a host of other things. We did what is called installing resources, and the resource that I came up with was to think of my firends as a literal net, holding me up and protecting me from falling when I could not do so myself. This resource or whatever has helped me immensely, and my earth-friends have come through for me again and again to the point where I don't have to rely on that net anymore. It is good to know it is there though. Actually, it kind of reminds me of the end of Harry Potter (spoiler alert) where he goes and faces the evil Voldemort alone sort of, but with the sort of mental company of supportive and loving friends and family that carry him through things he did not believe himself capable of. Even when the are not there they are there.

Perhaps that image...a literal net made up of supportive and loving friends and family...is one that will help others get through the trying times of PTSD like it did me. It was not a cure, and it did not make it easier or less painful, but it did enable me to get better and to face some pretty horrific stuff to know I wasn't -- and still am not -- in it alone.