Health Services Still Don't Get It

[Family Court Strategies: When Your Partner Has BPD OR NPD Traits.]

I was filling out forms for our 6 year old son,  ASD survey.  When I reached the felt family history form regarding mental health history,  it asked if there was a history of Bi-polar. It's less than half as prevalent than BPD, but BPD is never mentioned. I wrote in BPD "paternal grandmother,  not biological" (I'm adopted) anyway.  We've got an uphill battle educating the public on BPD (3-6% of the population; whereas,  Bi-polar is less than half that). I only put that the kids' mother has depression, only what she's shared with me that she's been officially diagnosed. 

[Turkish]

I was filling out forms for our 6 year old son,  ASD survey.  When I reached the felt family history form regarding mental health history,  it asked if there was a history of Bi-polar. It's less than half as prevalent than BPD, but BPD is never mentioned. I wrote in BPD "paternal grandmother,  not biological" (I'm adopted) anyway.  We've got an uphill battle educating the public on BPD (3-6% of the population; whereas,  Bi-polar is less than half that). I only put that the kids' mother has depression, only what she's shared with me that she's been officially diagnosed. 

[wendydarling]

Thanks for sharing Turkish. A telling, concerning omission and yes it's baffling why the Health Services are so behind the curve of evidence. Disconnected between the BPD medics and the administrators who coordinate production of such forms across many health departments? While you were completing on behalf of your son ... .the omission for a BPD adult (I think of my daughter's reaction to your experience) completing a medical history form is deeply invalidating. While she has courage and lives, accepts her vulnerability, and  speaks out on behalf of BPD and fellows who suffer BPD (emotional disorder is our agreed preference) to help educate and be there, one realises the uphill struggle for all, as you say.  I hope the consultation provides you further insight for you and your son. Small steps work for me.

WDx

 

[Icanteven]

  We've got an uphill battle educating the public on BPD

I'd say it's an uphill battle all around - the public, practitioners, health insurance, hospitals, whatever I'm leaving out - getting BPD on the map.

I feel like, in my situation, we're attacking the illness at angles instead of head on.  Ok, let's do EMDR, but let's do it for the crippling anxiety, making no mention of BPD.  Oh, and EMDR is covered.  Let's do DBT, but let's use that to attack the eating disorder.  CBT?  Mindfulness?  Those should help us get out in front of these mood disturbances.  You're actually willing to pay cash for DBT related to BPD?  I only take three patients at a time, but let me refer you to someone else who themselves is already full up so that you don't address the root cause of so many of these problems. 

And, to your point, we were already in the mental health system our entire relationship and I had never even heard of BPD nor had it come up from the various practitioners who saw my wife.  It's a very good point you make but I will say that, in my adventures over the last five months a LOT of people are suddenly familiar with the term, even if they don't know what it is.  Progress? 

[schwing]

It's because of the nature of this disorder.

I think that unless your life has been touched by this disorder in some way (through a close relative) it's hard to understand that this disorder might even exist.

People with BPD, at an acquaintance level, can be completely functional and productive people (i.e. high functioning BPD). It's only when your interaction occurs in familial or intimate contexts, that you might begin to see a pwBPD's dysfunctions.

As a healthcare provider, unless you're the pwBPD's therapist, you'd almost never interact with them in a way that reveals their issues. More than likely, you'd end up seeing the relatives of pwBPD as having more issues, physiological or emotional.

I remember reading somewhere that at one point French psychologist/psychiatrists questioned whether or not the disorder was real because it seemed to apply to too many people.

[pallavirajsinghani]

I think that there may be a reason why "Bi-Polar", "Anxiety", Depression" and such diagnoses are more prevalent.  The doctors know that most insurance plans will pay for these and not "personality disorders"... .  so some of the doctors actually may be trying to help... .a half baked help is better than none I suppose.

Perhaps some medical personnel here can chime in.

[motherhen]

At my ASD son's recent psych appointment intake the options to check off for family history were depression, "mental illness", and substance abuse. Others have been more comprehensive. My spouse is both Bipolar and BPD.

I wouldn't expect there to be a question about personality disorders, because there isn't nearly the research that shows strong genetic links like there are with the things they did ask about. Frankly there isn't a lot of research on it period, much less if it's genetic. 

I was shocked they didn't break "mental illness" down a bit more to bipolar, schizophrenia, etc because there are specific genetic links that cause those to run in families.

[Turkish]

This particular HMO won't diagnose BPD, but they will refer a patient for DBT if they suspect, even though the Dx and the treatment is provided in-house.  Probably for the reasons you all have listed.  It's like the psychiatric community walks on Eggshells around the disorder.

[Skip]

Not to defend, but there are practical reasons for some of this.

Up through the DSM IV, patients had to be evaluated using a multi-axial protocol - and since many mental illnesses are soft detection (no hard and fast criteria like a blood test) - clinicians go through a process of elimination in diagnosing and treating. Maybe it is just an eating disorder, let treat that and see what we have afterward.

Secondly, ASPD, NPD, and BPD diagnosis' are show stoppers. Job applications will ask, "ever been diagnosed with a mental illness?" There is huge stigma to all three of these.

[Turkish]

Secondly, ASPD, NPD, and BPD diagnosis' are show stoppers. Job applications will ask, "ever been diagnosed with a mental illness?" There is huge stigma to all three of these.

I wasn't aware that job apps can ask this. Seems like a violation of rights?

[Skip]

Secondly, ASPD, NPD, and BPD diagnosis' are show stoppers. Job applications will ask, "ever been diagnosed with a mental illness?" There is huge stigma to all three of these.

I wasn't aware that job apps can ask this. Seems like a violation of rights?

You're right. I'm wrong about this. I was confusing with it with arrest.

[hergestridge]

From my experience health care doesn't give a ___ about BPD. PDs is nothint they have specific treatments for, so they're not looking for it. In the case of my ex the doctor declared her bipolar and put her on lithium and neuroleptics. Her therapist later revised this said she was clearly BPD. I then brought this up to her doctor who just responded that it didn't matter because they would put her on the same medication anyway. I think her doctors certificates say bipolar to this day, even though everyone involved agreed that it's incorrect.

[Skip]

Again, and not to defend, physicians work through a hierarchy. The go for the low hanging fruit. If that treatment doesn't resolve it, they go up the tree.

Bipolar is low on the tree. Take a pill, be well. Not expensive. Most psychiatrists when dealing with someone with emotional swings will try this first. I would too. It makes sense. If treatment doesn't work, then look deeper.

When someone presents with intense emotions and high and low swings, they are going to look at depression, bipolar, thyroid dysfunction, etc. A lot of times that solves it.

Remember, to a physician, the only reason to label a disorder is to then apply a specific treatment (and get that insurance reimbursement).

If I follow your logic, hergestridge, there is no point in labeling anyone BPD because there is no treatment. Right?

However, there actually is treatment, but its very expensive. So the medical community (and insurers and the government) are going to say, try the simple cures first - see if they work.

There is another problem. The APA is fighting among itself over whether there should even be BPD. 87% of the people with BPD have the symptoms of another personality disorder... .so how good a diagnosis is it? There is a movement to just label all these things "personality disorder" and tailor the treatment to the person. Opponents argue that DBT is good for people with the BPD cluster and we'll loss tract of that if it all goes to "PD".

Nothing is cut a dried in this field of psychiatry.

It proabably worth noting that bipolar was a similar mess for years until they better defined it and had better treatment tools.  We will likely see the same with PD/BPD.

[Icanteven]

Most psychiatrists when dealing with someone with emotional swings will try [medicine] first.

We did this, and for the longest time, no muss no fuss.  Yeah, we kept tweaking the meds, and then we started changing the meds, and then we had to stop the meds and do something different on a temporary basis, and then go back on the meds but in shorter and shorter cycles until we found ourselves in psychotherapy being told there were a bunch of diagnoses her psychiatrist had missed for about a decade.  Speaking of which... .

However, there actually is treatment, but its very expensive. So the medical community (and insurers and the government) are going to say, try the simple cures first - see if they work.

This is what makes me see red about the course of my wife's treatment.  We have now run up hundreds of thousands of dollars in medical bills because we tried the simple cures first and doing so caused the real issues to fester to the point that our entire lives imploded.  Would we have incurred those bills at some point anyway?  I have no clue, but I do know that while we were going the conservative route things got worse and worse to the point that the ONLY reasons my wife wasn't placed into a full-time residential program is that we have great insurance and a huge support network that pulled out all the stops.  And even then, there were a couple of times she almost certainly should have been committed (she talked her practitioners out of it.  Don't ask me why or how).  And, to this day, she's never been formally diagnosed with a personality disorder even though she's doing DBT twice a week on top of CBT and EMDR and god knows what else to finally get at the root causes (which I've enumerated in other threads to the point of nausea).

There is another problem. The APA is fighting among itself over whether there should even be BPD. 87% of the people with BPD have the symptoms of another personality disorder... .so how good a diagnosis is it? There is a movement to just label all these things "personality disorder" and tailor the treatment to the person. Opponents argue that DBT is good for people with the BPD cluster and we'll loss tract of that if it all goes to "PD".

I read a book critical of DSM 5 that said something like "if 5 out of 10 psychiatrist agree on a diagnosis it is considered a clinically strong assessment."  To your point, can you imagine if only 5/10 doctors agreed on what kind of cancer it was?  Or what the blood work suggested?  Is this Anchorman?  50% of the time we're right every time? 

I found my head bouncing up and down reading your post and I guess the bottom line is this:  My wife has been misdiagnosed three times in her life, I suspect owing to the issues you raised.  Not only has she been a massive consumer of healthcare, but her illness also caused the disintegration of our family.  There were very real, very unfortunate consequences to folks "not getting it." 

It's gonna take a movement.

[Turkish]

I forget about thyroid issues, another low-hanging fruit. They diagnosed my mother with this last summer, along with PTSD (her words, but the form her PA shared with me listed "Anxiety", no code). My mom has been hypothyroid for decades. The tests showed her glands were barely functioning. She was given meds and released. When I rescued her last December, by February she took herself off the meds (she's an RN, so she has pharmaceutical knowledge) because they were making her feel worse. By the end of March, she was completely delusional, as she was when I picked her up and she was on the meds, and I had to take her back or she was going to report me (to APS, a lawyer, the cops, and possibly CPS for issues she was seeing with my kids through her disordered world-view). Luckily the cop who did pick her up on her "prison" break-out didn't believe her accusations against me.

I've never been in that close proximity to someone who was that mentally ill, not even my ex during her few worst occasions. Seeing her eyes dilate going in and out of reality as I was talking to her was scary to me. So was the roofing hammer she kept near her bedside, which I stealthily removed one day and she never noticed.

What I learned was that the medical providers seemed all too happy to pawn my mother off on me. I got a "good luck, you have a lot on your plate" from her PA. Maybe it was because she was on Medicare? I don't know. She had a long history with the county mental health clinic going back to the late '80s. No one put the pieces together. It felt to me like the stories we hear of DV, where the cops show up to take care of the immediate crisis, the root cause isn't addressed, thereby resulting in dysfunction, pain and $$$ in the long run.

[sweetheart]

No they don't get it at all... .
Who or where does the responsibility for BPD lie, criminal justice system or mental health system, especially for pw BPD and any additional dx, whose ability to function in the world is so severely impeded?
I was going to post and ask why there is still such a huge disconnect (IME) between real joined up understanding and the provision of care. I'm in the UK. (huge sigh)

[sweetheart]

I hope you are right Skip,

It proabably worth noting that bipolar was a similar mess for years until they better defined it and had better treatment tools.  We will likely see the same with PD/BPD.

This and this again,

What I learned was that the medical providers seemed all too happy to pawn my mother off on me. I got a "good luck, you have a lot on your plate" from her PA. Maybe it was because she was on Medicare? I don't know. She had a long history with the county mental health clinic going back to the late '80s. No one put the pieces together. It felt to me like the stories we hear of DV, where the cops show up to take care of the immediate crisis, the root cause isn't addressed, thereby resulting in dysfunction, pain and $$$ in the long run.

If I wasn't actually seeing this happening first hand in our lives, I don't think I'd believe that no one system was able to contain the chaos generated by this illness.
Thinking about it as I'm writing this is of course to a certain degree I am containing it. Hence my desire to post, I'd like someone else to... .

[HappyChappy]

Secondly, ASPD, NPD, and BPD diagnosis' are show stoppers. Job applications will ask, "ever been diagnosed with a mental illness?" There is huge stigma to all three of these.

I wasn't aware that job apps can ask this. Seems like a violation of rights?

You're right. I'm wrong about this. I was confusing with it with arrest.

As employers are liable for the safety of their employees at work, its good practice to have a health questionnaire for new recruits.  I also know big recruiters that will present the health questionnaire during the recruitment process. Even though candidates don’t legaly have to fill this out (health is on a need to know basis), it will be intimated that they must.  So you’re both right (if in the EU). 

[pallavirajsinghani]

Here a mental illness which has symptoms that either cause devastation to themselves and their loved ones or those resulting in criminally punishable behavior.  BPD sufferers are mostly fully functional (defined as in legally able to take care of themselves--not being disabled or handicapped in the usual definition of the term) and they have full legal rights.  So combine this with their own intense personal denial.  How can the medical community rally themselves to make significant strides into curing/managing personality disorders?  It's like Atlas struggling up the hill... .we have to be kind to the medical community... .

I do agree though that there should be a greater awareness of PD's on the whole, whether in the medical community or people in general.

One doctor here on the site explained to me that in the thought process of the medical community, the idea of "labeling" a person was the most critical and significant achievement.  This individual expressed that he could not understand why the non-medical community-people in general think of "labeling" as something negative. "Labeling" is a "diagnosis" and a "diagnosis" results in planning a treatment. 

I agree, diagnosis and treatment under the current insurance system in the US is daunting and sometimes inhibitive and sometimes prohibitive... .perhaps a universal health care (universal medicare) system is the way to go in the future like most other developed countries.  This is not a political statement, just common sense.  Perhaps with a universal health care system, there will be less fragmentation between specialties and different insurance plans.  In the name of "freedom of choice" we could perhaps be opting for a lesser functioning system of care delivery,

So what is an ordinary person like me to do?  Where can I put in my limited influence and add my puny shoulder to the good cause?  This is an issue that is always at the forefront of my thoughts.

[hergestridge]

  How can the medical community rally themselves to make significant strides into curing/managing personality disorders?  It's like Atlas struggling up the hill... .we have to be kind to the medical community... .

Sadly, I don't think there is much the medical community can do to treat PDs. The problem as I see it is that they won't acknowledge them because they're not cureable. Friends and relatives pays the price for this. Years and years of supporting the "sick" person. All the false hope. With a PD diagnosis you know it's most likely not going to get much better. Then you have the choice to either leave the person or stay and make the best of the situation. And you get to understand that all the fuzz is not caused by some temporary chemical inballance. It's just the way the person is. To me it made a huge difference.