Tuesday, September 06, 2011

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.

10 comments:

jen said...

Thanks for posting this!
My experience was similar: I never was completely out of work, but I had to cut back big time. I went in patient. I didn't sleep for months at a time. Finding this blog helped SO much, because I felt less crazy. Also, having a name for the pseudo-seizures and realizing that it was okay that I had those (just part of the healing process).

I still have nightmares a lot, but I work, live, and feel better than I ever could have imagined.

Hylie Random said...

I dunno how bad my PTSD is, objectively...I'm afraid to quit functioning because I may never start again.
My problem now is that I despise myself and therefore don't want to get better...and I doubt any help is going to change that. I can't forgive myself for going along with whatever he wanted.
I can sleep ok with the lights on and sort of function, still working. Self-injuring a lot though.
Insurance??? what insurance.

Anonymous said...

Thank you so much for this comprehensive, articulate post. I concur with all of it. Finding this blog today is a true gift to me. I am obsessing about a chronic trauma repetition and addiction I'm in with my longtime "boyfriend" (who won't commit, and who cheats sexually whenever we reach an impasse wherein the key involves his facing his patterns--I invariably do most of the emotional intelligence work in the relationship). I want OUT of this relationship, but nowhere to go and a totally effed up family of origin who lives in dissociated denial. It is not fun going through this pain, year after year.
Thank you again for this blog. Your candor, eloquence and information are an oasis. --ATB

jen said...

Hylie - I just wanted to cry reading this comment, "I can't forgive myself for going along with whatever he wanted." I have felt that!

I wondered how I could ever forgive myself for helping him rape me. That was more difficult even than forgiving him.

I think the thing that makes abuse so difficult to overcome is the beliefs we form about ourselves because we were abused...

I don't have insurance either. I was lucky - my church paid for an inpatient stay. And I found a therapist that was willing to take a lower fee because I didn't have insurance. I don't know if there are options like those around you, but maybe??

Hugs to you as you try to sort it all out!

ATB - I don't know your situation, but I do know there is a way out! You deserve better! You might not see it today, but don't give up looking for the way out.

Elisabeth said...

Hello and thanks for a great blog. I can really relate to you. Dealing with PTSD will always be hard for me i guess :( But reading about other peoples experiences actually makes me feel a bit better. If youd like to talk with me about this stupid disorder you can chat with me on ptsdforum.org or Mapofmates.com. Im using the username "elisabethy" on both sites. Hugs :D

jen said...

Hi. There was a time in my life when I was so alone and so afraid. Your blog helped me to feel alone and stronger and got me through some very awful days. In appreciation for that, I've nominated you for the Liebster Blog Award. To see more about that, you can visit my blog at http://stillme-thejourney.blogspot.com/2012/01/liebster-blog-award.html

Thank you again.

GettingBetter said...

THank you Jen!

J said...

This is the first blog I have read on PTSD despite having this for over 6 year. It is comforting to know there are other people who really understand the pain and suffering that comes daily with this condition. I am fortunate to have a supportive husband who is learning about PTSD and how to support me but I still feel terribly alone, isolated and unable to live my life. My PTSD is the result of childhood sexual abuse, sexual trauma in adulthood, incidents of violence and several car crashes. I live in England and unfortunately I cannot afford private health cares so I am on a 12 month waiting list for EDMR which is great as treatment will be free after the wait. 8 months to go now.

I have never been an in patient but have dipped in and out of mental health services since aged 16. I have addiction issues, huge intimacy problems, flash backs, nightmares most nights, hyper sensitivity to loud noises, low self esteem, self loathing issues, and almost every aspect of living has been affected due to this complex illness that I feel unable to tell anyone about due to the stigma attached to mental distress. I have also been depressed for as long as I can remember, used self harm to cope and made several serious attempts at taking my own life. What is most crazy about all of this is that I have a good career and appear to be 'normal' (whatever that is). I just manage to get to work and hold it together during the day knowing that my vices/ addictions will be there when I get home. However, this is only manageable for about 6 months then I have a breakdown where I am unable to work. My stressful job is always blamed for this and not the fact that every day is a battle with ptsd. It is so unbelievably hard for others to understand how difficult life is when every challenge no matter how trivial demands a fight or flight response. For me this leads to lots of physical health problems such as muscle spasms, palpitations, extreme fatigue and generally a poor immune system so lots of colds/virus etc. this then adds to guilt/ self loathing as I become frustrated that I cant just 'pull myself togther'.

I am strangely optimistic about the treatment in 8 months time and I have been trying to be kinder to myself. I do think the condition is surrounded by shame, stigma and sufferers are seen as weak and this will only change when society adopts a more understanding and less judgemental attitude to mental illness.

I do feel like I am beginning to go on a little but writing this has been a huge release and I hope others may see this and also not feel so alone. Thanks for reading, J.

Sarah said...

I have complex PTSD and am a recovering addict. Even though I am going on 10 years clean and sober, I do not take sobriety for granted. I don't attend meetings, as it is true that the Program and PTSD treatment can bump heads, but I know that without sobriety my mental health issues would plummet. Thank you for your article. please join me at my blogspot http://sarahsmithetal.blogspot.com/

Sarah said...

I struggle with chemical dependency and PTSD as well as DID. I find it interesting that there is talk of moving PTSD to the dissociative category in the DSM rather than having it in the anxiety category. Makes sense to me, as I have both. Feel free to see my thoughts, though sometimes they get gnarly, here:
http://sarahsmithetal.blogspot.com/