Monday, May 01, 2006

Breaking down the stigma.

Blogging Against Disablism Day

I am blogging against the stigma attached to mental illness. That means I'm gonna talk about it and I'm not going to be ashamed.

-I do not change when I tell you what I have.
-I am not being 'manipulative' or 'attention seeking' when I cut myself. I am looking for a release and it's a private thing that has nothing to do with anyone else except me and my brain (and the problems in my brain).
-I get triggered and freak out either by crying continually or by not getting out of bed for a week.
-I don't want your pity.
-I don't want you using my ill mental health to explain my behaviours. Yes they are informed and in large ways affected my my post traumatic stress disorder and the traumas in my past, but I'm working on it. I'm getting better and in small ways am becoming more in control of my life.
-My house is a disaster area because I can't bring myself to bathe normally let alone clean, and on those weeks when I am feeling energetic enough to finally clean my dishes or do my laundry I'll probably avoid cleaning my house since that is also the time I have enough energy to go and be social.
-I am not crazy and I am not someone you should suddenly be scared of when you find out I'm on disability. I'm also sick of being ashamed of it.
-SInce my breakdown I have not been able to concentrate on reading or anything except numbers which is why I chose my current major (we PTSD/Borderlines are awesome in that we have tried and done so many different things in our lives due to our quick boredom and inability to stay with one thing for long)
-Think that this is hard for you? How do you think it is for me?

Depending on who you talk to I have Severe Post Traumatic Stress Disorder (PTSD) and Borderline Personality Disorder (BPD) or I have Severe Post Traumatic Stress Disorder with Borderline tendancies. (But I should point out some people in the psychology profession believe BPD to be a manifestation of severe PTSD. Seeing as how approximately 75% of people diagnosed as Borderline were abused as children (physically or sexually) this makes sense and is a belief that I, personally, ascribe to and will write intermingling both as I do believe that they are closley related, at least in my case. Remember: I do not speak for all borderline sufferers.)

Whichever it is, and the government that gives me my monthly stipend through SSI-Disability has on record both diagnoses. My wonderful radical feminist psychologist refuses to diagnose me as Borderline because if I get that dignosis there are therapists who would refuse to work with me, simply because of the stigma attached to BPD. But my psychiatrist and the psychiatrist that did my SSI interview both wrote down Borderline, so I guess I'm stuck. But if therapists are afraid of us what do other people think when they hear that we have a personality disorder? Much less borderline, which is not talked about at all.

WHat we may behave like (symptoms):
  • Frantic efforts to avoid real or imagined abandonment
  • A pattern of unstable and intense interpersonal relationships characterized by alternating between extremes of idealization and devaluation
  • Identity disturbance: markedly and persistently unstable self-image or sense of self
  • Impulsivity in at least two areas that are potentially self-damaging (e.g., spending, sex, substance abuse, reckless driving, binge eating)
  • Recurrent suicidal behavior, gestures, or threats, or self-mutilating behavior
  • Affective instability due to a marked reactivity of mood (e.g., intense episodic dysphoria, irritability, or anxiety usually lasting a few hours and only rarely more than a few days)
  • Chronic feelings of emptiness
  • Inappropriate, intense anger or difficulty controlling anger (e.g., frequent displays of temper, constant anger, recurrent physical fights)
  • Transient, stress-related paranoid ideation or severe dissociative symptoms
Now reading it like that it sounds really scary, I know, but I and most people with BPD that I know are not. We actually can be quite charming and wonderful. And with most illnesses we are not like this all the time. I am borderline (in one way or another) but I am very mildly borderline. I've never gotten to explain the 'mild' part to people. They're usually all ready judging me as a crazy person. I mean yes, I have issues that I deal with everyday because of this, but I can usually convince myself that my friends love me when they're not around, And that took awhile to get through my head. I am the first to admit I can be a handful, especially because my borderline tendancies come out when I'm romantically involved with someone (awesome). But I am aware of them and will do whatever I have to to hold that in and not harm the other person (i.e. if I'm angry/irratible for no (apparent) reason then I'll stay home or I'll hide my cutting from the people around me.)

Look we all have some of these issues in varying degrees. So my response to traumatic stress of my childhood made it harder for me to deal with issues, but it shouldn't matter. SOmeone who has a mental disorder should never be treated the way that we are. We're not monsters, we just have issues that affect our entire life. Like you don't have any of your own. We may not be able to control our emotions or our moods as easily as others, but that by no means makes us terrifying, scary people. We're the same people you liked before you knew. I tell people about my PTSD and Borderline to let them know that I may act strangely and that it has no bearing on them. It's just how I react to stress and generally I've been triggered by something in the first place. I'm trying to be nice, not freak you out or scare you away. When you do get fresked out and scared because of it it is not my fault but your inability to see past the stigma of mental illness. Shame on you, not me.

Some facts to ponder: (From here.)
  • Borderline personality disorder is also known as emotional regulation disorder (ERD).¹
  • 2% of adults have this disorder. (There are more of us out there then there are people who are either bipolar or schizophrenic. And some estimates put the number as high as 10-14%!)
  • 69% to 75% exhibit self-destructive behaviors such as self-mutilation, chemical dependency, eating disorders and suicide attempts. (which is one of the 'hallmarks' of BPD)
  • 8 - 10% die by suicide usually due to lack of impulse control over depression.
  • Successful suicide rate doubles with a history of self-destructive behaviors and suicide attempts.
  • 50% experience Clinical Depression
  • Approximately 25% of those with ERD also meet the criteria for post traumatic stress disorder. (I believe this number should be higher given the next stat)
  • Between 40% and 71% of ERD patients report having been sexually abused, usually by a non-caregiver. (There are estimates that 75% of people with BPD were either sexually or physically (me) abused as kids, thereby making me think that PTSD and BPD may be closer related then presently thought.)
  • Diagnosed more often in females - approximately 75%.
  • ERD has received very little attention and funding by our nation's health care system. (could this be because it affects more women?)
  • Most clinicians are either mis-educated or under-educated about ERD and appropriate treatment. Thus people continue to suffer.
  • Cause of ERD is unclear but it appears to be a combination of genetic and environmental factors. More research is needed.
  • ERD is highly stigmatized in the world.
  • Many clinicians refuse to treat ERD.
  • ERD is virtually unknown to the public. (well let's work on this last one shall we)

27 comments:

unnaked girl said...

What?!

Today is Labor Day... Where's your blog on Workers rights!!!

Gimpy Mumpy said...

Happy Blogging Against Disablism Day! :)

Violet Socks said...

That's a good, honest post.

Here's something I'm curious about: when I first heard about Borderline Personality Disorder, it was in connection with Princess Diana; one of her posthumous biographers "diagnosed" her with BPD. What bothered me immediately about BPD is that it sounded like the kind of behavior that a large number of young women go through in their dating years. It seemed like the medical community was basically taking certain fairly normal stress-reaction behaviors of modern women and defining them as a disease, thus stigmatizing both the behaviors and females. Very reminicscent of the old "hysteria." When I read in the feminist literature, I discovered that many other people had had this same reaction and were arguing that BPD was a bogus diagnosis. Not that those behaviors don't exist, but that they need to be understood as a reaction to the enormous stress that young women (mostly) are under. But when you hang a "disorder" label on them, then you don't have to look at sexual abuse, pressure to be thin, gender inequality -- all of those social stresses to which women are reacting.

What do you think about that? I know very little about this topic and my information is probably years out of date.

Terry said...

Thanks for writing this. The stigma surrounding mental illness is huge and most people don't have a clue. I've had people tell me if I'd just "trust Jesus" it would all go away.

Your honesty is invaluable to breaking down the stereotypes.

lost clown said...

violet:

I think the difference (because lets face it we all have some of these behaviours to a degree) is dependant on the severity.

Just last week when I was triggered my friend walked me home and stayed with me until I calmed down. Then he left and I did feel abandoned, and that I had scared him away or done something horribly wrong. (As I said up there, this was stuff bouncing around my head earlier, but that was the jump off point, if you will) and I cut myself to relieve the pain, to punish myself for being such a fucked up mess. In short: I had a borderline moment, because I normally (i.e. if I had not been triggered earlier that week) would not react that way. Most people don't. Crying, yes, but cutting? I think it's an extreme.

As I said in my post I really think that Borderline is complex, serious PTSD that started in childhood. For me and most the people who were physically, emotinally, and sexually abused. That's why I know more women have it then men. But making it a personality disorder makes it extremely troublesome, esp. for women. I do think that has to do with patriarchy, though I firmly blame it for most borderlines in the first place.

Violet Socks said...

You've got me interested in this now, Burrow. I just spent 30 minutes reading the articles you pointed to, and I need to go read some more. Very interesting.

I think that a mental illness diagnosis is almost always a double-edged sword. On the one hand it enables one to get help, treatment, put a name to the problem, and so forth. On the other hand it creates what I think is a rather artificial distinction between "normal" people and "abnormal" or mentally ill people. There is such a huge range of mental states in humans, and psychology is still largely a question of labelling behavior.

Don't know if I'm making sense, as I'm rather sleepy!

spotted elephant said...

I'm so proud of you!

No shame. None. NO SHAME!

What makes me taste bile is the way "professionals" treat people with bpd. I didn't know this-certainly didn't study it, but it came up one day chatting with my therapist. She made a remark about how horrible it was to be diagnosed with borerline, and she actually shivered. Finding out that some psychiatrists and psychologists REFUSE to treat people with bpd is just...well there aren't really words, are there? "Well, I'm an oncologist, but I won't treat people with leukemia-they freak me out!" Uh, that dr. would lose their license, right?

Sorry, I'm ranting and I wanted to talk about your post. You did such a great job describing the disorder and how people react. I especially liked how you pointed out that healthy people have issues too. :)

redhotcurrydish said...

I just wanted to say how brave you are to not only actively work on/with your PTSD and BPD but to also talk about it with such clarity.

There are those of us (myself included) who love you unconditionally.

hexyhex said...

Excellent post. Thank you.

I think it's really important for those of us who are able to speak out about our diagnoses and our experiences to do so. Especially when it comes to stigma.

I gotta say, I'm stunned to hear that some pshrinks will refuse to treat BPD patients. That's horrifying.

Laurelin said...

Thank you for that post, LC.
Love you.

leelee1221 said...

I like your bluntness- I basically had to diagnose myself as BPD- my pdoc just kept rehashing bipolar, which he says is the underlying medical 'axis 1' diagnosis and that my BPD is 'axis 2.' He had just mentioned BPD one day in passing, I went home and researched it and was like, "THAT"S ME!" I was not abused or molested, but almost everything else is a perfect fit. Good post. I love feeling less 'abandoned' by knowing that others are out there who act and feel the same way I do.

lost clown said...

Thank you all. It is a very hard topic. I too hate that there are some people in the medical "profession" that refuse to treat us. What the hell is that supposed to mean? Huh? The fuckers. As if mental illness was not stigmatized enough in our society, but to have people who are supposed to help us refuse is just, well, disgusting.

A really good book is "Lost in the Mirror" I though it did an excellent job of describing BPD for the people who have it and for those in their lives.

leelee-I know how you feel. I belong to some borderline groups on livejournal and it has helped immensly (so have the PTSD groups).

rhcd-I love you too, I miss you terribly and am so happy for all the yays in your life right now. I gotta visit PDX again sometime, too many people I love down there that I never get to see.

missy_2_shoes said...

Wow. Kudos to you for being bright, intelligent and communicative about your problem.

I don't understand the stigma attached to mental health issues. I was riding in the elevator to see my shrink in a hospital and the lady next to me said, "what's on 17?" and I told her it was the mental health ward, psychiatry, and she said, "oh! Let me off at 16 PLEASE, I don't want to go where the crazies are." Um, Yeah, like that attitude really helps. Sheesh.

RGG.

Disability Blogger said...

Fantastic post. As a disability examiner, I had a few BPD cases. It's striking some of the similarities between it and bipolar

lost clown said...

Thank you.

I've noticed a lot of similarities too, but I think they draw the line btw the two by duration of manic or depressive states. Who knows, though.

flawedplan said...

That was a courageous post, lost clown, glad I found it. We visit some of the same blogs, this is my first time here, and I run a blorum (blog-forum) on mental health reform. BPD, its diagnosis and treatment is a major topic, as are the main activists who are truly in our corner (they're out there!)

I want to invite you for a visit if you ever feel inclined (there's a private forum too for women who want extra confidentiality). We are the labeled who suffer with both the condition and stigma, we need a hell of a lot of encouragement and especially from each other. So, whether we meet on BPD discussion grounds again or not, I am taking your post as an indication of another rare soul who gets it, and leave you with a few essays from my place where I tear apart the paradigm~


The First Thing Not to Do is Call Me Borderline:

http://p214.ezboard.com/fourcommoncondition97317frm11.showMessage?topicID=125.topic


What the haters think of Borderlines:

http://p214.ezboard.com/fourcommoncondition97317frm11.showMessage?topicID=101.topic

I also follow professional haters, pdocs here stigmatizing cutters:

http://p214.ezboard.com/fourcommoncondition97317frm11.showMessage?topicID=172.topic

And one about the move to change the name from BPD to something less odious:

http://p214.ezboard.com/fourcommoncondition97317frm19.showMessage?topicID=965.topic


These may not even show up as links of course, but if you go to the board and visit the forum called Kick It Over, you'll find most of the BPD criticism in there.

No pressure, hey, just a resource in support and solidarity.

lost clown said...

AWESOME!

Thank you, and I will visit it later when I have more time. Thank you for the links and the info!

flawedplan said...

Hey LC, thanks for coming to my board and sharing your friendly, affirming and open-hearted self. We don't talk much at my place, most of us have the BPD or other personality disorder, have been in psych wards and all that trauma and there's real depression on my board so we're just not big talkers, but I know your comments were appreciated and really brightened up the place. I left a link to this post in the Sledgehammer forum, I like what you say here so much, you don't stigmatize yourself and seeing that really helps people who do. I think self-stigma is the number one battle, so thanks again for the work you're doing, I'll be around...

lost clown said...

I'm really happy that it's appreciated. It took me a long time to get over stigmatizing myself. But it feels good to talk about and try to break down that horrible stigma surrounding mental (dis)health.

I'm glad that you have that space and that you told me about it.

MsPsycho said...

I have been diagnosed with Borderline personality disorder since 1986. Along the way I've also been told I have PTS, Impluse control, Acute Stress, Anti-social personality, OCD, Avoidant personality, Bi-polar, Panic disorder. And I do not take medication at this time.

I guess the amazing part is that I'm still alive. I guess if I can make it this long, any one can.

While growing up I was abused sexually, mentally, and psychically. The worst part was that I kept it all inside, never telling anyone until only recently. I began posting things on my blog that I have never told to anyone. It has freed my mind more than anything else I could have ever done.
The more we talk about thing, the better off we will be.

saltyC said...

Hi lost clown, that was a very brave post.

I just want to say, I am very skeptical of how clinicians and psychiatrists view "mental illness", I think they stigmatize people too. It doesn't make sense to me when they claim there are biological causes, when there is no physiscal test for these things.
I wonder if it's something altogether different from physical illness. Especially when so many humans who exhibit these behaviors suffered extreme stress and abuse. Who's to say that reaction is not normal?

This is not to say the suffering or the bad behaviors are not real. Of course not. But the doctors don't understand, most of them have had much easier lives than their patients.

I think if we look at the personal histories we can find the true cause, and realize these are strategies for survival, (even cutting is a strategy for survivial) and what's really sick is our world.

I have behaviors that would classify me as OCD, but I don't buy it. I saw a therapist with the Karen Horney Institute who told me maybe they were my way of coping with stress.
It was a self-feeding system: the more stress, the more rituals, the more I thought it was wierd, the more stress. I convinced myself they weren't the problem, the problem was what was giving me stress.

The title of your blog says it all: angry for a reason.

lost clown said...

mspsycho: Talking feels so good, and is such a strong step. I hope you keep doing it, b/c I know that talking about things that I was previously ashamed to talk about has helped me tremendously. *hugs* You are a very strong woman.

saltyc: WOAH! A Karen Horney Institute? I LOVE Karen Horney. That's awesome. The more I look at 'mental illness' (or more accurately my own)the more I see that it is a way of coping with traumatic stress. More and more people that I talk with who have different 'disorders' all find them to be some way of coping with a horrible thing that happened to them. I.e. I totally agree with what you said. That's why I blame the patriarchy. (Why do more women suffer from ERD or depression? Huh? Fuckers.) And I'm angry for SO MANY reasons. LOL

SeaRabbit said...

Today is October 16 2006.... and I wonder why you are not writing anymore...
I am diagnosed with PTSD/BPD or ERD... since last March... and I need so much the words of others like me... You are precious... and I would love you to pursuie... ;-)

lost clown said...

I'll try.

MaggieH of Against Pornography said...

Excellent and courageous post, Lost Clown. Thank you.

jth said...

The mental health world has commited two mistakes/sins with "BPD".

One. It is simply a bad catch all.

Two. Out of Laziness or arogance applying "Disorder" is a huge diservice.

I found "BPD" from matching behavour I had witnessed and lived with descriptions writen by others.

The catch all part fails in that there is a very clear break on the PTSD side of BPD and the genetic.

Once you find "BPD" the ability to cope and deal with it takes a huge step backwards because of the "Disorder" label.

Change the name to?

"Hurtful Childhood"
"Wronged Childhood"
"Adult Child of Non Met Needs"

If it falls on the biological side call it?

Dysforicology?

Something that means knothing and carries no stigma.

"BPD" is a bad label that in no way accounts for the environmental factors suffered or any the possibility that its biological or genetic.

The term needs to go.

Bravegirl said...

Yes, borderline personality disorder leaves a very bad taste in my mouth.

Although I am angry at therapist's attitudes about not wanting to treat borderlines, I am afraid now to see one, or to tell one about my disorder because I am afraid they will drop me.

After two months of seeing one particularly good one, I left her because I was so afraid of her finding out.

It is because of this stigma that I feel I have to keep this a secret!

And I HATE IT.

It has to end!

Thank you for this.

Bravegirl

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