Worse with DBT before better?

[LittleThings]

My DD who is 19, has just been diagnosed with BPD by her psychiatrist. She also has bipolar, as diagnosed by the same psych, for which she has been treating her since July.

Last week, the day she talked to the Dr. and got the diagnosis, she went home from her appt. and while I was at work was hanging out in her room watching shows (Dr, Who is the latest craze) which is mostly what she does in her free time.

Later that evening around 8:00 she came walking down the hall sounding like she was laughing. As I heard her approaching the stairs I couldn't tell if she was laughing or crying, and it turns out she was doing both at the same time. Long story short she went into a full blown panic attack, hyperventilating/shaking/limbs going numb, until we called 911 and the paramedics came. They questioned us about her and we let them know she has had anxiety, but nothing like this before. They tried calming her down with breathing before taking her to the hospital. She was released about 1 am, and I took her home.

As we sat in the ER waiting, she told me she had been looking at info on the internet about BPD, and recalling that that morning her psychiatrist had told her she should do a 10 week intensive DBT program they run, but that things "might get worse before they get better." She said she'd have homework and reading to do. My DD felt this might have been the reason for the panic attack.

She also apologized for all of this spilling into my life. I could only say, "it is what it is". I am truly exhausted from months of worry, effort to take care of myself (exercise, eat right, sleep, maintain my own friendships), keep things with my non-BPD son on the right track, go to work, and cook/clean/shop. My marriage is suffering because I/we are so stressed underneath it all. Loans for college she left half done will come due next month. I can't imagine her being able to pay them back at this point in time.

She missed work again yesterday because when she left to drive there it was very foggy and that set her into a panic, so she came right back home. Asked me to call and tell them, so I did. (not sure I should have done that for her, but she couldn't talk at the time)

Can anyone explain about DBT? How difficult is it, and also how helpful? Looking for some light here in this darkness.

Our objective is to better understand the struggles our child faces and to learn the skills to improve our relationship and provide a supportive environment and also improve on our own emotional responses, attitudes and effectiveness as a family leaders

[crazedncrazymom]

Hi Littlethings,

I imagine it is quite unsettling to get this diagnosis.  It's a pretty major one.  I know I'd be freaked out if someone told me I had BPD.  My DD has never gone through a DBT course, but we use many of the skills her.  Mindfulness, validation, SET statements etc.

I'm glad to hear you make sure to take care of yourself.  That is so important.  I wonder how you can get dh to work with you and take care of ourselves?

-crazed

[charred]

I suspect most these problems are worse before they get better... for the odd reason that working on fixing a problem keeps it in your mind and you think about it more often.

Found that dealing with a pwBPD... had me on these boards a lot and that kept all the issues in my mind and made it seem worse.

At some point you get results, turn some corners and it slowly gets better.

There are a lot of resources on these bpdfamily.com boards, including communication tools to help you, be sure to look around, and get the support you and her need. Good luck.

[LittleThings]

Thank you Crazed, and Charred.

My DH (especially) and I are just going full tilt all the time. We just need a break... .or need to make a break for ourselves. We're no spring chickens :/

I have used some skills I've learned by reading here, and that has helped.

As far as DBT, my daughter says she isn't ready to take on the therapy yet. She is still trying to get meds right,  regulate the anxiety, and stabilize in her job. Not sure if she can do that since current therapy isn't seeming to help.

As far as she's thinking, in DBT she'll be told all that she's been doing wrong, that she's caused a lot of her past problems, and the hardest thing... .that she needs to change. At some level, there must be comfort in the familiar, however dysfunctional. She knows no other way, so fear has got to be right up front.

However, I would imagine that BPD patients would get some empowerment by learning skills to cope and ways to change their reactions/thinking ? I wonder if anyone has insight into what the patient is up against when they enter this type of therapy, or has seen it in action?

"turn some corners" ~I like that

[crazedncrazymom]

As far as DBT, my daughter says she isn't ready to take on the therapy yet. She is still trying to get meds right,  regulate the anxiety, and stabilize in her job. Not sure if she can do that since current therapy isn't seeming to help.

As far as she's thinking, in DBT she'll be told all that she's been doing wrong, that she's caused a lot of her past problems, and the hardest thing... .that she needs to change. At some level, there must be comfort in the familiar, however dysfunctional. She knows no other way, so fear has got to be right up front.

I don't think DBT is the same as regular type therapy.  With BPD there is thinking distortion so giving them a list of what is wrong with them won't help.  For instance you could say to me, crazed, you really need to stop doing xyz because it is crazy making.  I would think about it.  If it made sense I would work on changing it.  With a BPD there is no thinking about it.  There is only feeling shame for not being good enough and they continue the behaviors because they can't quite make the connection.  A BPD person really needs to be met where they are and help them raise themselves. 

Example: Cutting - You can't just say cutting is bad.  Knock it off!  The feelings behind the cutting need to be validated.  Wow you must have been really hurting when you did that.  What was going on at that time?  Then what can we try besides cutting to help you deal with your pain?  After a few times the therapist lets it be known that these are not suggestions but requirements to meet the treatment goal. 

I hope this helps.

-crazed

[LittleThings]

Wow you must have been really hurting when you did that.  What was going on at that time? 

This is current therapy, as far as I know. Most days after therapy, my daughter will come home and sleep for the rest of the day... .very down.

Then what can we try besides cutting to help you deal with your pain?  After a few times the therapist lets it be known that these are not suggestions but requirements to meet the treatment goal. 

This is what I wondered about. Very helpful. And difficult work I'm sure.

[crumblingdad]

Very difficult and exhausting situation for you and a lot to digest.  The good news is many professionals are hesitant or unwilling to diagnose BPD so the good news is you and your DD19 have a place to begin seeking help and treatment.  It is a long exhausting road and I don't know if it gets worse before it gets better necessarily.  What I do know from all I've read is DBT is FAR more effective when the entire family understands it and learns the techniques. BPD is very difficult to treat and really revolves around behavior modification rather then just treating with meds. So at the core of DBT success is a combination of support for your DD19 and her willingness to get the help so all of you can return from the dark, frustrating and often torturous places BPD often takes those suffering from it as well as the families who love and just want to support them.

With all that said I HIGHLY recommend you read a book called Overcoming Borderline Personality Disorder: A Family Guide for Healing and Change by Valerie Porr

I have been very involved with DBT but it has been while my DD17 is in an RTC and what I've taught myself through reading books such as Valerie Porr's.  The RTC she's in doesn't teach DBT skills in quite as structured a manner as many groups do.  But DBT generally involves a combination of both group DBT therapy as well as individual counseling to gain the skills.  It truly is a program built around behavior modification by helping your DD19 understand and regulate her emotions.

I would not necessarily look at this as a "it's going to get worse before it's going to get better" as I choose to look at it as a hopeful, albeit exhausting, journey of hope and opportunity to give BOTH your family and your daughter a better life where she can learn to love herself and you all can live a full life not paralyzed and controlled by this debilitating illness.

(And if you were to search back 6 months ago or perhaps even 2 you would not have read in my posts much about feeling any hope so it does get better)

[LittleThings]

Thank you, crumblingdad,

 

It sounds hopeful from the way you describe it. And perhaps a good exhaustion rather than the psychic hangover type that results from the emotional rollercoaster of BPD.

I do hope DD will do the DBT sooner rather than later. She seems to want to get this help, but isn't sure she can "handle" it.

I will order the book you suggested. There's perhaps a disconnect when the family obtains the tools, but the pwBPD doesn't yet have/use them, but of huge value nonetheless. I have felt "less crazy" myself when communicating with her after learning some of the skills for dealing with pw/BPD.

I am happy you and your DD have made progress That gives me hope!

[griz]

Littlethings:  My DD did two 6 month DBT programs.  The first go round was not very good.  she didn't really want to go and we forced her.  After we completed the first 6 months (usually you do two 6 month cycles) she told us in no uncertain terms that DBT was bulls... t and was not going back.  At this point I felt like it was time to give her a break so we did not go back.  About 6 months later she asked to return... .she was ready to do the work.  The T at DBT told us they find with most teens that they don't really get it until the second cycle so this was not unusual.  We returned to DBT and she continued with group and individual and at this point I saw it sinking in.  I asked her once why it was working now when she told us before it was bulls... t and she said, and I quote, "I wasn't ready. When I look back now, I wish I was able to accept help sooner".  Of course hindsight is always 20/20

I believe that DBT is the best way to go but I think it is so important for a least one parent to attend.  My DD and I went to group together.  I learned so much.  The only thing I would do different is that for a long time I went to an outside therapist for myself and about 6 months ago I switched to an individual therapist at the DBT center, and it has changed my life.  They understand what you and your child are going through and in individual I can refine my skills. 

Things can get better... .they will get better and when life just sucks, remember that we are all here for you.

Griz

[jellibeans]

This is an interesting topic that I never thought about but there seems to be a link when I look back on how my dd has responded. My dd16 started DBT last Xmas and although I thought she was doing really well and actually participating she actually did get worse at first. She took a turn downward and we finally had her admitted to RTC because of the SI. I guess you would say she hit bottom and I know there are some pwBPD that don't seem to have a bottom but she did. I think that is when she made the decision to work on her problems... .she is not 100% with this but she is working more than she has in the past. We have seen a great improvement and dare I say stability from her ever since.

She is still therapy with a therapist that deals solely with DBT and we see a family therapist who is also DBT. She was going to group but recently stopped. I am not sure she was getting anything from it anymore and I was concerned about the other kids in that group calling her and over dosing etc... .it was a lot for her to handle and I think she needed to step back from the group.

I think also at the same time I took a workshop with her therapist on DBT and that helped me better understand how I needed to change my approach.

I really don't know if I feel comfortable saying she did worse... .I think it is a whole process and it all seemed to lead to a better understanding and better coping skills for her and our family.

I just wanted to give my two cents... .I am going to really think about this topic more. I wanted to let you know that things do get better. I can reflect back to last year and can see that pretty clearly. Helps to put things in prespective. We are not runing a race here we are running a marathon.

[jellibeans]

My post reminded me of this story I posted a year ago on this site. I am not very religious and I hope I don't offend but this story helps me to remember to keep things in prespective. I hope you find some help from it. It is one of my favorites. It is hard sometimes to be patient. I am guilty of wanting change now but in reality change takes time.

There is a story of a small German village with two churches on the two ends of the town. Each year on the feast of Corpus Christi (which we celebrated on June 10th and I went to mass at Notre Dame on the 17th anniversary of my ordination), the people gather at one church to make a journey to the other.

They begin early in the morning and they take the whole day to make a journey of only two miles or so. Why does the journey take so long you might ask? Because for every three steps forward, they take two steps back. There is a method to their madness. For they know that in the Dance of Christian Life there are moments of great joy and much peace and happiness, but they recognize that there are also moments which set us back a few steps and sometimes we lose our way. Some days we feel as though we've taken ten steps forward and other days we feel as if we've backtracked so far that we may never find our way out again. That's life isn't it? We have to remember that we must work on moving forward and not give up when we've fallen behind.

As the people walk they say the great words of St. Paul in his letter to the Corinthians--"Faith, Hope and Love." And with the two steps back they say, "Pain and Suffering." We must acknowledge that along with faith, hope and love; life also brings us pain and suffering. To ignore the fact or live in a fantasy land that looks at the world from rose-colored glasses, sets us up for failure. I know that this journey will bring me much joy and hopefully a deepened sense of my own vocation, but I have to know that I will face difficulties as well.

Those who are too old or too young or infirm to make the journey go up on the hillside above the village to eat lunch and watch the procession. What they have discovered, is that from a distance the procession never seems to move backward. The pilgrimage down below appears to be constantly moving forward. From a distance all of our failures and set backs appear to be smaller than they are. We must take the long view. We must work on getting some perspective in our lives, so that we never allow ourselves to get caught up in the failures and fail to see the forest for the trees.

Our objective is to better understand the struggles our child faces and to learn the skills to improve our relationship and provide a supportive environment and also improve on our own emotional responses, attitudes and effectiveness as a family leaders

[LittleThings]

Thank you Griz and jellibeans,

I was thinking about this and am sure my DD took the worst out of what the psychiatrist said to her (this is a tendency on her part to see only the negative), but at the same time group therapy has to be very different from individual therapy, and there is most likely a fear of the unknown... .listening to other's horror stories, etc.

Another issue is that this particular practice has many disparaging comments in reviews online about their lack of organization, and some unprofessional approaches. The Dr. is frequently late. My daughter has been cancelled on at the last minute, and on one occasion my dd missed an appointment and they wouldn't see her unless she paid them in full for the missed one. Her regular therapist told her that was illegal (not that missing an appointment is a good thing!) But, they were very harsh with her. This office offers DBT, but I'm a little worried about her going there.

The therapist said her office offers DBT as well, so that might be a better option... .thoughts on this?

They also frequently forget to call in prescriptions, prescription changes and generally are difficult to get hold of.

She can switch psychs, but then she will need to use a therapist from the new practice... .she is not thrilled with this idea.

Griz, I would love to attend family therapy. I do see my daughter trying harder than ever to keep things under control, to be more cognizant of others around her and not lash out at them.

jellibeans, your story was inspirational... .I will practice patience and try to believe the things I tell my daughter... .try to relax, things will work out, don't be too hard on yourself, take it one step at a time, I believe you can handle this.

[Someday . . .]

Little things . . .just wanted to let you know that when my daughter was in McLeans 3 East program for six weeks (intensive DBT program), that, yes, she did get 'worse' before she got better.   When she was there she became anorexic again.  Her therapist said that is was common for a patient to revert to old patterns to cope with what was going on.  He also said that since my daughter (and probably many others there) was so adept at not dealing with the pain of BPD for so long and that now she actually had to address what was going on (though mindfully you understand) that, emotionally, it threw her back to square one.   Fortunately, with DBT, she was able to get out of that spiral quicker.   Just wanted to let you know that we were told that it is common to revert to old 'safe' patterns before the newer 'safe' patterns begin (DBT).   Though, of course, everyone is different  :  )

[LittleThings]

Yikes, ok. This is good to know, however my DD would be doing outpatient. It would be unfortunate if she began to cut again, or if she lost her job. Ah, the unkown!

Was your daughter doing much counseling before this program?

[Someday . . .]

Yes, and no.  The yes part is that she saw a really good therapist for two years which she REFUSED to talk about her true issues.  Topics like school, friends etc was what she would be willing to talk about, but none of the 'heavy' stuff (deep, underlying issues).  So, when my dd25 went to Mclean at the age of 21 she had stuffed all her deep, painful issues so far down that it was quite overwhelming to her.   Hopefully your daughter will find DBT an easy transition (?) and not revert to older patterns.   

[jellibeans]

Hey

I just wanted to check in with you to see how things were going?