The Goal of This Blog
I started to write this blog in April of 2010. I was firmly entrenched in the psychiatric medical model at the time. The first couple of months of postings are difficult for me to read. They are full of the language that the system had taught me – labels and symptoms, all the descriptions that the Diagnostic and Statistical Manual of Mental Illness spelled out.
This is a blog about the search that my daughter is on looking for relief from mental health issues. I do not deny that she struggles with them but I do contest the language and the treatment that my daughter was subjected to while she was looking for help.
This blog is also about me and how my family and I try to support a beloved member of our family.
My daughter followed the doctors orders until one day she couldn’t stand the drugging and triggering, traumatic conditions of residential care. She fled the last treatment facility in February 2009 and, despite being told that she would have to take a truckload of psych drugs and live in a residential community for the rest of her life, she has carved out a life for herself in New York City.
My conversion to anti-psychiatry came slower. For the last year, my daughter has struggled with withdrawal and I believed up until June of 2010 that we were witnessing an overload of “mental illness”. I continued my role as caretaker, but I mourned the fact that she wouldn’t seek help from the “professionals”.
My shift in thinking was finalized after I read Robert Whitaker’s book, Anatomy of an Epidemic.
There is not a biological component to mental health issues. There is no such thing as a “chemical imbalance” in the brain prior to the introduction of psychiatric drugs. The mental healthcare industry was built on the false premise that there is disease and the cure is in the medication the psychiatrists dispense. There is no scientific evidence that the mental health issues that my daughter deals with are caused by biological imperfections.
I deal with guilt that I lead my daughter into the psychiatric system. But, I did it in good faith. I believed in the system. No alternative were presented to her along the way.
Today, I am an advocate for change. I would like to see the language we use describing mental health issues to be re-formed around a healthier attitude. One that replaces “illness” with words that embrace differences. I would like to see the stigma attached to those people carrying the labels of “mental illness” abandoned and, through careful consideration of how I write this blog, I hope to model a new way to talk about these issues.
I also advocate for change in the way the industry “inducts its victims”. I would like to see alternatives offered at the first visit someone makes to a healthcare professional. If drugs are an option, I suggest that there is full disclosure of their life-threatening effects – shorten life span, sometimes difficult or dangerous withdrawal problems, the possible lack of motivation, the possible inability to hold a job, enjoy social interaction, and there should be complete disclosure of side-effects. Alternatives should be offered at the first sign of mental distress. Diet, exercise, meditation all play a huge role in our mental health.
I have considered deleting the first couple of months of this blog because the language is so hard for me to read now. But, I am not going to because I need to own the process that I took to re-evaluate the psychiatric system. Maybe it will enlighten others to do the same.
A dear friend just forwarded me a link to your blog. You could be writing about my family. Thank you, I plan to become a faithful reader.
What a wonderful format to bring this topic to light. We applaud your efforts to get a conversation going and to offer support to others in similar circumstances. A marginalized population if ever there was one….both those suffering from serious mental illness and those surrounding/loving/interacting and struggling with BPD individuals.
Kris,
Thank you for sharing your world via the blog site. I believe sharing is caring. This is a world unknown to me, but I am fascinated and horrified all at the same time. There is so much we know so little about.
Thank you, Kim. I wish I had this kind of an outlet all along the way. What I wrote today was hard to put into words but because I now know that I am not alone it makes it easier. For too long I thought that what was going on in our house was unique. When I finally, slowly and very selectively, started talking about life with a borderline, I discovered that the story was very similar in most houses where there is mental illness.
Thank you for your support,
xx Kris @Kim
Thank you Kim T.,
Who would have ever thought that I would be a blogger? Yet, it feels right. I know that there is an audience for this subject. There is plenty on the web written by the afflicted but much less by those of us who are trying to understand their pain and help. Thank you, good friends, for always supporting me. I know it has been hard.
xx@Kim Tsocanos
Hi Anne,
Unfortunately, the world of the mentally ill is usually kept behind closed doors. It is unwieldy and scary and because it is unpredictable, families learn to cope – most often by keeping it contained, concealed. But, we suffer. It is hard and I want to give a place for families to say how they feel. I want to turn the industry on its head and I need help. I hope that opening the door on our family’s struggle, there might be a tiny push in the right direction.
Thank you for your support, Anne.
xx Kris@Anne Dowdle
Hi
Kris, I got a tear in my eye when I started reading your blog.
Thank you for letting me in to your world . With all you have been through … I think you are a wonderful mom .
Sue
Thank you for caring enough to share…Olivia’s story ,told by a beloved mother, WILL touch the lives of others….May you continue to be blessed TO BE a blessing to others ..You are making a difference, Kris…..and someone else’s life will be richer because of your willingness to confront and expose the struggles of those afflicted with mental illness. Pam
Kristen,
I am so glad you found my blog so that I am able to read yours. One of my new passions in life is raising awareness and hopefully raising funds for more research. Thanks for sharing your story here. I am not sure where the road is leading my son but it looks like he’s headed for schizophrenia and I am moving out of denial into grief…
Barbara,
I am happy to have found your blog, too. My daughter thought that she was schizophrenic. It was a particularly bad time. All her defenses were down. I found her sobbing in the basement and took her to her psychiatrist. Her psychiatrist at that time told her that, although her symptoms were frightening, they did not fully match a schizophrenia diagnosis. She was worn down and defenseless. The borderline diagnosis stuck but they gave her every drug known to man. Nothing has tamed her mind. I know that the meds that are matched specifically to schizophrenia are often effective.
I wish you the best of luck,
xx
Hi Kris,
Welcome to this online support group. I will be reading your blog. Thanks for writing and commenting.
Thank you for starting this blog and allowing those of us with a loved teenager hear others experiences and share in suggestions of what works/doesn’t work or how things evolve. As the mom of a BPD teenage daughter who has chosen to live with her dad and for whom “mom” is the cause of all her illness as seen by her father and her, your support is so helpful. Thank you.
You cannot be the reason for your daughter’s pain. I hope that you know this. Deep down. If you are compassionate and understand that she cannot help the outbursts and accusations, your support will be what she needs in the long run. BPD is a nasty illness and there is no way to avoid the abuse that sheds off its victims. It sounds like the hard but only option you have is to remain available when the living situation doesn’t pan out with her father. Learn as much as you can about the symptoms of BPD so that you are prepared to help your daughter. Basically, just being a sounding board and keeping the edges pulled up (steer her towards safe decisions, away from harmful ones) is all that you can do as a care taker. The borderline sufferer wants to be loved unconditionally. And, it is hard when their need is coming at you in barbs and jabs.
I wish you the best of luck and request that you do not listen to your daughter when she says that you created her situation. It is the ultimate guilt trip and you shouldn’t have to take it.
xx kris
Your love for your daughter gives me great hope, and I read often. Thank you for writing.
Today I discovered this blog after receiving an email from leadership at FLbpd.org. One post mentioned your blog, Kris,”borderlinefamilies.com” and so I have scanned much of the material on your site. My husband and I lost our long struggle to save our “BPD” daughter from the world and herself seven years ago. It has always been my strong wish to write a book sharing the particulars of her horrible struggle for life and acceptance. Mental health professionals as a group were probably her worst enemies. A few kind souls–three caring case managers and a nurse here or there saw the goodness in my daughter’s soul and the agony of her day-to-day life. We formed and ran a “BPD”-specific support group under the umbrella of a regional NAMI entity. Our Patty suffered and worsened from the overt onset of illness around 1980 until her untimely death June 2003 at age 36&1/2 years. I was Patty’s primary advocate although her Dad helped as much as he could. We both were prime movers in a nationwide group effort to get NAMI to accept and advocate for people and families faced with this daunting illness. It took years! Yet BPD still faces stigma beyond most other mental illness diagnoses. That is all I can handle today. My heart has been broken for years.
Gail Rockwood, Mother of tortured and dead Patty–the light of my life.
Oh Gail,
My heart goes out to you and to the millions of other families struggling with a loved one diagnosed with BPD. It is a vicious illness exacerbated by the drug regimes that psychiatrists and organizations like NAMI support. 75% of the funding for NAMI comes from the pharmaceutical industry. I really do think that an overhaul of the current system will save precious people like your Patty. My daughter is the light of my life, too. I have been on a very frightening road with her and I am seeing a glimmer of light now that she is off most of the drugs. The psych drugs were the only consistent course of treatment offered to my daughter for years. Hundreds of them in various combinations.
I do know that for many suffers, the mood stabilizers and antidepressants and antipsychotics are essential to getting out the door every day. The cocktail is constantly needing to be tweaked and added to. My dream is to change the medical paradigm that motivates drugs first, alternative treatment later. Like the organic food industry slowing building it forces and overpowering the huge corporations, we can slowly make a change.
The treatment for individuals with borderline is appalling. In many counties outside the US, drugs are not given to a person diagnosed with a personality disorder. Group and family counseling is the primary approach. In the States, the diagnosis of BPD is like handing down a life sentence. But, I think that this can be rewritten.
It is for families like yours that I am trying to change the way the BPD is perceived and treated.
You and your husband will be in my thoughts, Gail. Thank you for contacting me.
xx kris
Today I discovered this blog after receiving an email from leadership at
FLbpd.org. One post mentioned your blog, Kris,”borderlinefamilies.com”
and so I have scanned much of the material on your site. My husband and I
lost our long struggle to save our “BPD” daughter from the world and
herself seven years ago. It has always been my strong wish to write a
book sharing the particulars of her horrible struggle for life and
acceptance. Mental health professionals as a group were probably her
worst enemies. A few kind souls–three caring case managers and a nurse
here or there saw the goodness in my daughter’s soul and the agony of
her day-to-day life. We formed and ran a “BPD”-specific support group
under the umbrella of a regional NAMI entity. Our Patty suffered and
worsened from the overt onset of illness around 1980 until her untimely
death June 2003 at age 36&1/2 years. I was Patty’s primary advocate
although her Dad helped as much as he could. We both were prime movers
in a nationwide group effort to get NAMI to accept and advocate for
people and families faced with this daunting illness. It took years!
Yet BPD still faces stigma beyond most other mental illness diagnoses.
Dr. Linehan’s DBT seems to the anointed be-all-and-end-all answer. I can only say that the “DBT-lite” practitioners my daughter encountered hadn’t the slightest notion of working to engage her in a therapeutic alliance before spouting the manualized mindfulness and self-soothing skills that my daughter often laughed at. In my 2003 calendar, I discovered Patty (after her death) had written terse comments on various entries I had made. One was particularly apropos, “DBT,tee-hee,is not for me.”
I have barely touched upon her ordeals, which included several serious attempts at suicide, a constant battle with drugs/alcohol, abuse by many men and “friends.”, self-mutilation, self-loathing, and, at the end, total despair. The professionals labeled her non-compliant and–you guessed it–TREATMENT RESISTANT. I can’t stop the tears of grief now, so will end my post.
Dear Gail,
I continue to be very moved by your story. It parallels my daughter’s in many ways. The “treatment resistant” judgment was always difficult because it implied that my daughter was actively refusing to get better. Which, of course, was not the case. She was desperate to find relief.
I am sorry for your loss.
xx kris
@Kris
Thanks , Kris, for your words of comfort. I hadn’t realized that my post would carry my full name and prefer that you use only my first name. I probably shouldn’t have used my daughter’s true name–should have called her “P.” I was for many years upfront on the BPD scene and wrote volumns of letters to other BPD families and to many of the experts. I was able to be included in some major conferences on BPD, under the aegis of The National Institute of Mental Health and, as a Board member of TARA-APD, I collaborated with several of TARA’s advocacy outreach campaigns where I worked with Valerie Porr, Tara’s founder and president.
I will tell you that my husband and I found P dead in her apartment midday after she had demanded to return to her place the previous night from our house where she had been staying for a few weeks. Post-autopsy found she had a lethal mix of psych meds and street drugs in her system, so this time hadn’t been an overt suicide attempt. I will give further thought about posting more about P and us.
Gail,
I sense that all my readers are sensitive. I hope that you will feel safe telling P’s story here if you feel you want to. Your story hits close to home as your experience is one I have feared experiencing myself for many years.
I am familiar with TARA and Valerie Porr’s work. It sounds like you and your husband were involved with your daughter’s struggles, looking for help and trying to find answers for many years. it is such a sad story and I am sure that similar versions are played out in homes throughout the world with more frequency that the professional would like to admit. The doctors and hospital staff that worked with my daughter were constantly frustrated by her resistance to their programs. She wanted to feel better, but they didn’t have the answers. She tried very hard to toe the line but, in the end, she couldn’t and I think her decision to run away from treatment saved her. She is trying very hard to make a life for herself in New York after being told that she could never live on her own.
We support her but she is really making some headway in carving out a life for herself since she has gotten most of the psych drugs out of her system.
She still experiences bouts of mental distress and I am always on call to help hold her world together.
Take care of yourself Gail,
xx kris
It was quite touching to read your expressions in dealing with a daughter with BPD. I often wonder how my mother feels, and in some sense I think she could really relate to your words. I say some sense, not because you are off the mark at all, but rather since I have been in the “recovery” stage of BPD for almost a year and it doesn’t sound like your daughter is quite there. (My deepest hope is that she soon will be) I am almost symptom free, although I must admit I do cringe at that phrase, in that if I still feel the loss of my heart in my chest cavity when my husband and I have a disagreement and he walks away from me (I know this is an extreme response to a valid coping mechanism if done gracefully), how can you really say I am symptom free right? Well, it becomes “symptom free” when you begin to be skillful and effective at those times instead of enraged. Although admittedly, sometimes I wished I could rewind and go back to being ineffective, it was less work and hurt less, believe it or not. I must stress, this is only sometimes. Perhaps when I am not in my wise-mind. At any rate, thank-you for your bare-boned expressions and I look forward to your posts. My family will benefit greatly.
MJ
Oh MJ,
Thank you for commenting on my blog. You and your family are who I was hoping to relate to when I wrote the book and started the blog. It is hard to talk so openly about such a difficult topic but I think that by opening the door a bit, I let out the stigma and dissipate some of the pain and, in the long run, these are good things to do. Honesty isn’t always easy. My daughter has me riding the roller coaster these days. But, I just went upstairs and gave her a beautifully written letter that someone wrote to me about how to start to meditate and she smiled and took a deep breath and my heart was happy. Maybe you know the author, he has a blog – Edward Knight at http://www.professored.com/
The community that has gathered around my family because I opened the door, is sympathetic and instructive and above all, non-judgmental. I am so thankful.
xx kris
Hi Kristen,
I stumbled upon your blog today in my travels across the “net” trying to find information and help for my sixteen and 1/2 -year-old son. He was officially tagged as bipolar by two different psychiatrists, but from all my digging around on the topic of mental illness, I believe he suffers from BPD. The bipolar diagnosis never seemed to be quite the right fit, but the day I read my first article on BPD while browsing in Barnes & Noble, I began to cry. It was my son. All the craziness that continues to engulf our family these past two years had a name, and other people who were living and dealing with it. I continue on a merry-go-round of “How do I help make him better.” There seem to be very limited resources in northeast Florida. I am very interested and hopeful regarding nutritional therapy, but have found few resources and little support in this area. My son is on Seroquel right now, but I don’t think it is helping him all that much beyond taking the edge off his anger. He fights us every step of the way on everything and won’t take care of himself: diet, exercise, sleep, taking his meds regularly, school, refuses to see therapists (gone through four already), etc. What do you think about nutritional therapies?
Hi Cathy,
Welcome to borderlinefamilies. Funny thing is that I no longer use the language and labeling of the psychiatric industry- yet, here it sits in my name…
My daughter was burned by the industry and sounds very much like your son. She went through endless therapists and treatment centers and was finally deemed “treatment resistant”. In other words, they couldn’t find a way to help her and repeatedly asked her to leave. She tried every drug available on the market, in every combination – safe or not. She got “sick” at the hands of the industry and better when she fled the system and began to clean out her system.
She was on Seroquel. Rough drug, a wet blanket dampening down most function. Be careful if your son decides to get off of it. Help him to wean off slowly.
Nutrition! Yes! and exercise and some kind of mindfulness training. Meditation. Learning to focus on something else. Somehow you need to help him want to own his own life and the course that it takes. Very hard to do with a teen. I have a friend whose son is the same age and is exhibiting the same mental health issues.
There is a desperation at that time in their lives to be like everyone else. When they don’t feel like they can mesh, it is very frustrating. Does your son like sports? The young man I am talking about finds huge relief in physical exertion.
A couple of things I would suggest. Be careful with the amount of electronic interference in your son’s life. For many people like my daughter, the frequency “reverberates” long after the video, tv, games have been turned off. The brain needs to be calmed in another way. (These devices are addicting and soothing but harmful.) Turning them off early in the evening will help to maintain his circadian rhythm. When my daughter was your son’s age we had no television (even us parents) during the week. Set boundaries and stick to them. Your son will survive even if he seems like he will break (or break something).
Your son needs validation. His feelings are real, even when they seem over the top. Make sure you respect his reality. This is very hard. I know. But, there is a community of people who read my site and are on facebook who will help you.
You can help to heal your son without the psychiatric industry dictating the way.
You can find me on facebook at Kris Ulland.
Good luck,
xx kris