Gets better/gets worse

[Amal]

Hello everybody. My 15year old d has BPD.

I wanted to get some feedback on this. Dr and therapists say it is all part of BPD, but I need some advice on riding the roller coaster.

When my D starts to improve and we begin to back off, maybe stretch out her therapy sessions, or drs tell her how well she is doing, some "incident" always happens. We have to be careful not to  remark on how well she is doing because some new "incident" always seems to crop up. She has an eating disorder which got so bad, we had to put her in a residential hospital in Colorado. She has been home for 6 months and is doing well with ups and downs now and then. One example last month, both her dietician and psychiatrist told her that she is doing so well. Then she started complaining of severe stomach pain after she has been eating properly for 6 months. We did all the tests, endoscopy, radioactive stomach emptying test, everything. Gstroenterologist said that there is nothing wrong with her stomach that he can see. Before we even got the results back from her tests, she was saying how much better her stomach was feeling. This is just an example, but over and over this happens. Weeks go well, then suddenly she wants to be "goth"... .then we ride out that things start going well again then she decides goth is not for her, then things go well again, and she shoplifts something.

With the eating disorder, it is the most difficult. When she gets more freedom like being in charge of her food choices and then she binges, she blames me for not watching her more. I actually do watch her, but she sneaks food while we are asleep. Then we go back monitoring more she gets better, then she shop lifts.

Something always happens during these times for the setback to occur, but it is something very minimal for us, but to her it is huge. One of her friends could roll their eyes at what she is saying, then we see the setback. Her emotions are very disregulated.

How do you all handle the roller coaster of ups and downs? Just when you think things are going so well, then it is like I'm just waiting for the other shoe to drop.

Amal

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

[pessim-optimist]

Hello Amal,



And welcome on the Parenting board! We understand how you feel - many parents here feel like they are always waiting for the other shoe to drop... .This part of the illness is really frustrating (among all the other frustrating parts of this illness, correct?). We often refer to it as two steps forward, one step back.

Although it's no consolation, your therapists are right that it is part of BPD. It is not easy to get used to it, but with time, you learn to enjoy the good times knowing that setbacks are right around the corner, and as you gain confidence in dealing with the illness, you worry less about what or when will happen, and the anxiety goes down a bit.

There is a wonderful article here talking about exactly what you are describing, and what we can do to make it a little better. The below is a quote from it:

Progress evokes fears of abandonment. The families of people with Borderline Personality Disorder can tell countless stories of instances in which their son or daughter went into crisis just as that person was beginning to function better or to take on more responsibility.

The coupling of improvement with a relapse is confusing and frustrating, but has a logic to it. When people make progress - by working, leaving day treatment, helping in the home, diminishing self-destructive behaviors, or living alone- they are becoming more independent. They run the risk that those around them who have been supportive, concerned, and protective will pull away, concluding that their work is done.

... .They may not make a conscious decision to relapse, but fear and anxiety can drive them to use old coping methods.

Next, the article expands on main points of action that help:

Lower your expectations.

Keep things cool and calm. (Appreciation is normal. Tone it down. Disagreement is normal. Tone it down, too.)

Maintain routines.

Find time to talk.

Here is the link to it, I encourage you to check it out: https://bpdfamily.com/content/support-child-therapy

Welcome again Amal, keep posting!

[qcarolr]

Hi Amal and welcome 

Practicing the suggestions in this article have been a part of my healthier relationship with my BPDDD28. I so wish I had the information here when she was younger. Age 15 is when things really started tumbling down. My response was often to withdraw to protect my own  fragile self. I get it now that DD likely experienced this a abandonment. In the past year I have gotten enough support in my network to apologize to her for many things from her childhood. Some she does not remember that have created so much guilt for me.

I have also been integrating many other tools and skills from here over the past 5 years. It has been a slow process for me to let go of my ineffective strategies that made things worse. Co-dependency and denial and a stubborn will to be self-sufficient and in control.

My DD has also faced many trials, though an eating disorder thankfully was not one of them. Drugs and sex -- those were her self-injury actions. We are hopeful she has gained some stamina to release herself from the drugs and the need for a bf without the drugs to be supportive instead of toxic. There is a lot of hope -- she has changed a lot this year. My ability to let go of expectations, love her regardless of circumstances and let her know of this love, and advocate for her to have access to all the resources available. She is finally choosing some of these resources.

I feel more ready than ever to weather her trials with her instead of against her. Validation skills, values-based boundaries, self-care to be strong.

I am so glad you are here seeking new ideas and strategies. Eating disorders are so scary. Keep being there to protect your DD. Remember to take care of yourself.

qcr

[jellibeans]

hello Amal

Welcome to this site... .I am sorry for your struggles with your dd15. I remember when my dd was 15... .things were very unsettled and she was hospitalized often. Finally was admitted to a RTC for a time. I do think it gets better. My dd is 17 now and is in crisis less often but we are still riding that roller coaster and I think we always will be. I just believe that things will slowly get better over time. Having hope will get you through the hard times. When my dd chooses to use the DBT coping skills she does better at handling stress. I try to look for the patterns in her behavior. My dd also like to be sick to avoid stressful situations like school. I believe that once high school is over she will do a lot better. It is that environment that can be harsh at times. I think the communication tools here have helped a great deal and qucaroir has really laid it out for you as well. Validating, boundaries and self care are key. don't let yourself get so run down you can't cope yourself. I want to suggest a book to you... .Overcoming BPD by Valerie Porr... .it has made the most impact on me and has helped me with my dd a great deal. hang in there Amal... .it does get better.

[Amal]

Thank you all for our replies. Jellibeans, you said when "your daughter chooses" to use the DBT skills... .can you talk more about this? And maybe others? We are desperately working to get her the best treatment, but she still thinks that DBT is no help to her at all. She has homework which she doesn't do. Was any of your children thinking like this?

Amal

[jellibeans]

Amal

My dd17 mind set at 15 was very similar... .resisted taking meds... .resisted therapy. We finally found a DBT T and my dd likes her. I think that is key. Finding a T your dd can talk to and form a relationship with. We also got a new P in the last year and he has also been very good and has helped dd a great deal. He has a lot of experience with BPD and although he is not her T we do appreciate his help and input.

When I say my dd chooses... .I mean when she is getting very upset and I try to remind her of her skills this sometimes is not taken well and she chooses to escalate rather than take direction. I try not to do this but at times when I feel she is heading for trouble I do try and reminder her that her behavior is not helping the situation.

My dd has used the coping skills and over the past year I will find her drawing and painting... .those are the good times. I would not worry about doing the homework... .the less you push the more open she would be to it. Can I ask what your main issue are with your dd? Is it the eating disorder?

[Amal]

Jellybeans

Right now the eating disorder is very strong. She was hospitalized this year from Jan through the end of April because of it. She started with cutting then just replaced cutting with the eating disorder. The hospital for eating disorders was the best in the country... .absolutely fabulous but her eating disorder was just a coping mechanism for the BPD. The hospital taught us how to deal with the binging and purging holding her accountable and she has maintained her weight for 6 months now but with huge ups and downs along the way. As soon as something stressful happens, she purges when she can sneak it.  It is a constant struggle... .we take it meal at a time some days.

My biggest problem with her now is still the day to day. It seems when we are going along so well, she sabotages it. It is something new every month. Recently it has been sexuality confusion which h doesn't make sense because if she was gay or straight we wouldn't care but all the Dr's say she is not and it is just another thing to throw in our face to ask us 'so do you love me now' kind of thing. As with every other persona she developed we just reassure her that we will never stop loving her no matter what but will not accept certain behavior that will harm her or her recovery

and will do everything we can to stop harmful behavior such as the eating disorder.  This week's biggest fight was over my refusal to by her a binder for her breasts.  I reassured her that I love her no matter what she is but I will not buy her anything that will deform her body since she is still growing. Dr's do not think she is gay but  think it is more about testing us to see if she can find something that will push us away and also hating her body. Now that she is at her normal weight she has breasts and before at 88 pounds she didn't. 

To answer your question, I think the hardest thing we are dealing with is the roller coaster of really good times then the sabotage.  I know I shouldn't take things personally but the things she does really do hurt. We recently saw her tumblr post where she was posting how much she wants help but her parents will not get her a therapist. It hurts so bad to see these things when I'm dragging all week from driving to her therapist, psychiatrist, and dietician appointments who are all out of town.

Amal

[jellibeans]

Amal

I think the most important thing is not to take it personally. Your dd is sick and once you fully accept that then it will be easier for you. I think it is really common for the pwBPD to try and make their parents like the vil ones... .the ones that don't help etc. My dd has done that and has made abuse charges hoping she would be removed from our home or that she could go live with firends and have the asy life with no rules. I also think they like to blame us for their problems and take the victim role often. I don't think there was a sadder day then when CPS showed up at our door. Broke my heart but it really is something she will go back to often. Telling pther parents how mean we are etc... .She is better now and has not done that recently but if cornered she would not hesitate to accuse us again. I have taken to recording our conversations now secretly is she starts to get heated. She does rage as much as she use to but when she does it is a shock to the system and I feel I need to protect myself.

I really think you are handling things well. My dd has eating issues too and I just try and ignore it and not give it the attention. She has not been hospitalize for eating disorders so it is hard for me to say what to do in your situation.

Have you read the articles on the side? I really think validating her feeling about being gay is important. Is the binder expensive? I would buy it for her if it will help her get through this all. Gender confusing is really common with BPD... and probably with teens in general who are experimenting right now. I am not sure how the binder works and if it is dangerous.

The roller coaster is the hard part... .we have weeks of calm and then something will happen and we are on the ride again. I just had a meeting with her P and really he feels my dd will just need time to mature and give her brain time to develop. Might be her late 20's before she really sees some stabilization. I think all we can do is put boundaries in place and try and support her the best we can. My dd will turn 18 next year and I am not sure what that is going to look like but I do think she might want to move out and do what she pleases... .we will have to see if she can get a job and make some money for that adventure first. Hang in there... .Try to encourage your dd to solve her own problems and try to vadiate what you can.

[Amal]

Jellibeans,

You're going to laugh at this (but maybe not)... .about the binder, drs said it was more about the extra weight rather than the gender thing because she is searching for a fixed identity, and she is telling therapists nothing exactly "fits" the way she feels. We decided to tell her we support her and would do something to validate her feelings but not in a way that harms her body. We settled on a really tight sports bra. After a week, she just came to me asking if we can go shopping. She wants some really pretty Victoria secret bras! God help me.   

[jellibeans]

Amal

Isn't this the way things seems to go... .all you have to do is wait a day and they are on to something else. My daughter is very impulsive and when she gets something into her head it is very hard to distract her from her goal.

[qcarolr]

Amal,

Your sports bra response was very validating. It allowed your dd to safely explore and experience this choice. Exploring is a part of the natural developmental process. Our kids with BPD do tend to explore at the extremes. This makes safety first so much more important.

Her asking for Victoria Secret, the opposite of flat chest, is her choice too. This allows her to 'save face' in changing her mind. Our kids with BPD also experience humiliation on the extreme edge.

Loving my DD28 no matter what keeps us connected. Seems you and your dh have given this gift to your dd.

Qcr

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