Born Borderline?

Yesterday there was a discussion in a Facebook group about whether borderline personality disorder could be a brain condition you're born with. The original poster started by saying she feels so broken and has her whole life that she wonders whether BPD is not just a mental disorder, but a brain dysfunction.

Now I want to say that a more severe disturbance has nothing to do with whether you were born with the condition. It's not like, if you were born with it, that it's necessarily any worse thn if you acquired BPD as a result of childhood trauma. Some commenters mentioned feeling their wacky childhood may've been due to their BPD rather than vice versa. Does it truly matter? I don't think so. Like, people are usually born autistic, but this doesn't mean all that happens to the autistic growing up is due to autism.

From what I understand, BPD is caused by a combination of temperament, which is largely genetic, and childhood circumstances. There was this debate in a Dutch women's mag a few months ago about two parents of BPD adults saying they didn't like the assumption that BPD is trauma-based because they didn't abuse their children. Then someone with BPD responded that even the most ordinary parents make mistakes, and this can set off BPD in vulnerable people.

Let's move away from black-or-white thinking in the nature/nurture debate. Let's also move away from blaming ourselves when something is brain-based, or feeling more broken for it, and from blaming our parets when something cannot yet be shown to be brain-based. Therapy can change brain function. So can other environmental circumstances, like trauma. When we have a brain dysfunction, we may perceive experiences differently. The two basically interact.

I remember when the Dutch organization that oversees health insurance proposed to drop mental health coverage for people who'd gotten mentally ill as a result of life circumstances. Have we truly gone backwards that much, believing that the brain and mind are two entirely separate entities? Science shows that, with mild depression for example, it doesn't matter whether it's due to recent divorce or it comes out of the blue, a wait-and-see approach is always best. With severe depression, not so. And as for BPD, it's usually severe enough to warrant treatment whether it's brain-based or not.

Things People with Mental Illness Should Stop Doing

Through a fibro blog I read, I came across 30 things to stop doing to yourself and its adaptation 16 things fibromyalgia sufferers need to stop doing. I am going to adapt this list for people with mental health conditions.

1. Stop running from your problems. This one may seem obvious, but oftentimes, people with mental health problems go on and on until they crash. It is not like your mental health condition isn't there if you run from it. We aren't supposed to avoid all unhappiness and hurt. Rather, confront your problems and learn to accept them, adapt to them or solve them.
2. Stop lying to yourself. Again, your mental illness or life challenge won't disappear if you pretend it isn't there. Like the author of the original list says, the first and hardest chance we can take in life is to be honest with ourselves. There is this idea in some forms of therapy, notably dialectical behavior therapy, that change and acceptance go hand in hand. In other words, you won't change if you don't face the truth.
3. Stop putting your own needs on the back burnder. Having needs is human and normal. Everyone has a need for acceptance, safety, nurturing, etc. As mentally ill people, we often get taught that these needs are not normal because we may expresss them in unconventional ways. Stop thinking that just because you're told that you do stuff "for attention", it's wrong to need attention. On a related note, stop thinking that taking good care of yourself is wrong.
4. Stop trying to be someone you're not. You may want to live without your mental illness, but that doesn't mean you'll become someone else in the process of recovery. Recovery is about becoming the best you you can be. It is a challenge to be yourself in a wolrd that reinforces conformity, but it is a challenge worth taking on.
5. Stop holding onto the past. Trauma may've shaped your life and may've even caused your mental health problem, but you cannot change the past. I disagree with the origninal article's statement that you shouldn't be thinking much about your past, but don't use it as an excuse to keep wishing for a new past. Work on processing feelings that come up in the present.
6. Stop exclusively looking to others for happiness. You are responsible for your own life. While support people or professionals can help you, they will not solve your problems.
7. Stop thinking you're not ready. This thought will often become a self-fulfilling prophecy. No-one, including no currently mentally healthy person, feels 100% ready when they need to step outside of their comfort zone, but it take sstepping outside of your comfort zone to recover.
8. Stop complaining and feeling sorry for yoruself. I disagree with Julie Ryan, the fibro blogger, saying that whining for five minutes without involving friends is okay, and the rest is not. In fact, it can help to whine to an understanding peer sometimes. Where I agree, is that it needs to stop.
9. Stop wasitng time explaining yourself to others. As Julie says, most people won't care enough to listen. Just assert yourself. If people are close to you, it may be helfpul to explain your mental health condition, but to people you casually meet, a simple "No" should be enough.
10. Stop overlooking the beauty of small moments. It's often in the little things that we find that glimpse of happiness. My classical culture teacher in high school once said that there is only one moment in your entire life that you can be happy, and that's now.
11. Stop acting like everythign is fine if it isn't. No, you aren't okay. You're depressed, anxious, having dark thoughts or otherwise suffering. While you shouldn't wallow in self-fity, as said before, you shoudln't lie to yourself either. You may need to put up a smile for a bit when with people who won't accept your mental illness, but among friends and especially with your mental health professional, it's okay and even helpful to be sincere.
12. Stop trying to be everything to everyone. Doing so is impossible, and trying will only burn you out (if it hasn't alreaady). Try to take the chance to make small contributions to people's lives instead.
13. Stop worrying so much. It may be especially hard when you have a mental illnes, but cognitive therapy is effective for a reason: you can change your thought processes. Worrying will not strip tomorow of its burdens, as the original article says, but it will strip today of its joys.
14. Stop focusng on what you don't want to happen. Focus on what you do want to happen instead. This is going to foster an attitude of goal-setting rather than one of avoidance, and this will help you a long way along your recovery.

I didn't include all of the original items. With some, like the commandment to stop spending time with the wrong people, I disagree (there are no wrong people). Others I did not feel were too applicable to mental health recovery. I probably could add some more items to this list, too, but for now I won't.

Research Recommendations for Improving Treatment for People with Personality Disorders

Two studies in nursing journals that I read recently examine good practice for personality disorder treatment. Bowen (2013) specifically studied ideas for intervention with borderline personality disorder patients, whereas Fanaian, Lewis & Grenyer (2013) studied more general ideas for implementing personality disorder services. Bowen also emphasized direct intervention strategies, whereas Fanaian et al.'s study more focused on organizational structure. Bowen (2013) interviewed nine mental health professionals, four of whom were nurses, working at a specialist unit for patients with BPD. Key apsects of good practice mentioned by interviewees were:

• Shared decison making: for example, service users and staff should meet in community meetings to discuss and think through decisions that a service user might otherwise make impulsively. This thinking thorugh also counters black-and-white thinking.
• Rules should be actively recreated, rather than being strictly enforced or being abandoned. This is an offshoot from the shared decision making in the above bullet.
• Patients should have social roles, such as jobs on the unit nd group therapy with a pratical focus. This is a way of bringing into the open and then challenging interpersonal difficulties that are so typical of BPD.
• Social disturubances must not just be prevented, but also be used as an opportunity for learning.
• Peer support, including feedback on behaviors, but also including compassion. One interviewee also commented that peer support can enhance the patients' looking inward for the resources to help themselves, rather than viewing the staff as sole bearers of wisdom.
• Open communication. For example, this unit had a structure whereby three service users were elected to discuss issues happening on the unit with the staff as a means of liaison.
• Involvement with the person as a whole, seeing them as more than their BPD symptoms.

Bowen (2013) does highlight that not all of these aspects of good practice can be generalized. After all, this unit was a specialist unit for treating BPD and had its structure built so that these aspects of good practice could be met. For example, there were daily meetings, group therapy, and patients had jobs on the ward.

It was found that mental health workers on this unit had a pretty optimistic outlook on recovery from BPD. This is in contrast to research which shows that mental nurses have negative attitudes about BPD patients. Fanaian et al. (2013) emphasize this negative attitude towards people with personaltiy disorders as a major barrier to appropriate care.

Fanaian et al. (2013) had about 60 experienced clinicians in personality disorder treatment, including psychiatrists, psychologists, social workers, a nurse and a counselor sit in groups of four and brainstorm on topics relevant to personality disorder treamment. They overwhelmingly found that current practice in mainstream mental health settings is both poor and inaccurate. Ways to improve practice included:

• More education and training on the subject. Some groups also recommended that workers in non-psychiatric settings who have frequent contact with personality disorered people, such as social services staff, be trained in personality disorders. Carers, such as family and friends, also were said to need education and training.
• More support through supervision and leadership. For example, there should be more supportive and regular treatment team meetings. Clinicians also mentioned better access to Internet resources on treatmetn and assessment for mainstream mental health staff. There also should be greater support for staff approaching burn-out, as it was felt that staff working with personality disordered people have a high risk of burn-out and work-related stress.
• A shift from risk management to recovery-focused treatment and case management. Acute hospitalization should be avoided when possible. Rather, patients with personality disordeers need intensive, multidiscipinary case management.
• Clearer guidelines and protocols. Many groups of clinicians emphasized a consistent approach across teams, particularly when managing crises.
• An attitude shift to decrease stigma. Some groups emphasized the fact that many health professionals have a negative attitude about personalityy disorder patietns, and this is a barrier to effective treatment.

Fanaian et al.'s (2013) study, like all studies, has its limitations. The clinicians participating in the study were invited to a personality disorders meeting based on expertise and experience. Therefore, it is not known whether these findings generalize well into mainstream mental health provision.

References

Bowen M (2013), Borderline Personality Disorder: Clinicians' Accounts of Good Practice. Journal of Psychiatric and Mental Health nursing, 20(6):491-498. DOI: 10.1111/j.1365-2850.2012.01943.x

Fanaian M, Lewis KL, & Grenyer BFS (2013), Improving Services for People with Personality Disorders: Views of Experienced Clinicians. International Journal of Mental Health Nursing, 22(5):465-471. DOI: 10.1111/inm.12009.

Meme: 30 Things About My Invisible Illness

I found this interesting meme for invisible illness week, so here goes.

1. The illness I live with is: undiagnosed other than mental illness (borderline personality disorder).
2. I was diagnosed with it in the year: not diagnosed for my physical symptoms. Diagnosed with BPD in 2013.
3. But I had symptoms since: 2007.
4. The biggest adjustment I’ve had to make is: taking meds everyday.
5. Most people assume: my illness is unreal because it's not diagnosed.
6. The hardest part about mornings are: waking up tired.
7. My favorite medical TV show is: House.
8. A gadget I couldn’t live without is: my mobile Internet modem.
9. The hardest part about nights are: going to sleep on time, pain.
10. Each day I take __ pills & vitamins. (No comments, please): 6.
11. Regarding alternative treatments I: have not tried them but am open to some.
12. If I had to choose between an invisible illness or visible I would choose: visible.
13. Regarding working and career: I don't work, have never worked. I was given disability benefits with no problem based on my visible disability which is the least of my disabilities.
14. People would be surprised to know: that I'm in pain even when I don't show it.
15. The hardest thing to accept about my new reality has been: that I can't live with my husband.
16. Something I never thought I could do with my illness that I did was: take a university-level course.
17. The commercials about my illness: I've never seen/heard any.
18. Something I really miss doing since I was diagnosed is: go for long walks alone.
19. It was really hard to have to give up: my dreams.
20. A new hobby I have taken up since my diagnosis is: crafting.
21. If I could have one day of feeling normal again I would: have a great day with my husband.
22. My illness has taught me: all about stigma.
23. Want to know a secret? One thing people say that gets under my skin is: "It's just stress."
24. But I love it when people: genuinely ask how I am.
25. My favorite motto, scripture, quote that gets me through tough times is: "Character cannot be developed in ease and quiet. Only through experience of trial and suffering can the soul be strengthened, ambition inspired, and success achieved." - Helen Keller.
26. When someone is diagnosed I’d like to tell them: well I've not been diagnosed with anythign yet except for the BPD which I was just diagnosed with, so I'd like to be on the receiving end of some advice first.
27. Something that has surprised me about living with an illness is: how cruel people can be about judging who is really ill and who isn't.
28. The nicest thing someone did for me when I wasn’t feeling well was: allowing me to whine for a bit.
29. I’m involved with Invisible Illness Week because: I want to teach people about undiagnosed illnesses and mental illness.
30. The fact that you read this list makes me feel: appreciated.

Requirements for the Proper Multiple

Tonight, I was talking on the phone to the organizer of the DID support group I was a member of for two years until I got kicked out for presumably not having DID last May. She guessed my diagnosis correctly, but went on to assume I'd imagined my DID. Well, I'm going to be completely honest here: I have indeed internalized some symptoms that I didn't have before my diagnosis, like the amnesia, but I had known for almost ten years that I had parts when I was diagnosed. Did I imagine the splits when I was fifteen-years-old because I wanted to be crazy, while I'd never heard of DID back then? Well, I don't think so. Of course, whether these emotional states are truly dissociative or not, depends on your perspective. The organizer got to saying incorrectly that BPD and DID have nothing in common. In reality, many people believe DID is BPD with more flair.

The organizer got talking of me quoting books on the furums. Well, that doesn't say anything, does it? Just because I listed the criteria of BPD yesterday, doesn't mean I don't have BPD, right? Apparently, if you want to be authetnic, you're going to have to have made up your own symptom list without any influence from literature. I wonder how this person, who studied psychology at university, did this. Apparently, people who've studied mental disorders in college cannot be diagnosed with a mental disorder themselves.

To air off a bit of steam in a healthy way, I'm going to repost and expand on the list of requirements for the proper DID'er that I compiled after being kicked out of the support group.

1. You can't use jargon like "co-conscious", "inner self helper", etc. if you've not had your diagnoisis forever. This is not supposed to be familiar language to a person just diagnosed.
2. Even if you know you've got parts because you've established a fair amount of communication, you can't walk into your therapist's office saying you experience parts in yourself. In fact, you cannot have obvious dissociative symptoms. According to what I've been told, saying things happen to you but not quite to you, is not appropriate either (which is what I really came into therapy with).
3. You must've gotten into therapy with seemingly irrelevant symptoms like depression, self-harm, etc. Then it's the therapist's duty to figure out you're multiple, but they can't just straight out ask if you experience parts in yourself. On occasion, they can, but you must be completely clueless to the fact that it's not normal.
4. You must have some doubts about your diagnosis, and you must fear that it's all real. If you fear you're fake, you're obviously already a faker.
5. You must not switch too openly or demand switches be acknowledged, cause DID is something that's supposed to be hidden. Keeping the dissociation hidden must be an end in itself. Note that you won't get a diagnosis of DID if the diagnostician hasn't seen you switch.
6. You must want to integrate.
7. You cannot have littles who write properly. You also cannot have littles who write improperly but on the right subforum, cause how are they supposed to know where to write? However, you can't have alterrs write on the main forum either. Why else would there be specific forums for alters?
8. You must recognize just enough of what other DID'ers, who obviously all are not fake, say they experience, but not too much. You must be able to articulate your experiences in your own words, and others determine whether you use your own words.
9. You must have time loss, but how you're supposed to know you have time loss, is unclear. You can't just say you lose time when others come out, cause how do you know? You cannot say you don't remember something when asked, because then obviously you could pretend you forgot. I don't know how a therapist is supposed to realize you lose time if they cannot ask, especially given that implicit memory is often intact in DID, so DID'ers act like they do remember what other identities did.
10. In meetings, you must present as the host (with the birth name) at all times. You must be oriented to the present if you want to participate in meetings. On the other hand, you cannot actually be the person with the birth name, cause that person must've gone to sleep, been gone at an early age or be totally unaware of any others. How are you supposed to come to a DID meeting if you are clueless about other personalities?
11. You must have survived horrific abuse, but in this partiuclar group, you cannot talk about it in meetings. You need to drop the occasional SRA reference to make clear that you are an authetnic survivor.
12. You must validate others' every experience, but you cannot say you can relate.

In short, you're required to have just enough in common with other people in the group to be able to benefit from shared experience, but you cannot recognize too much or it'd be seen as imitating.

Ramblings on Self-Image and Diagnosis

This afternoon, I was discussing y treatment plan with my psychologist. I heard her saying something about diagnosis and treatment being complicated by a combination of autism with axis II symptomatology. "Axis II," I thought, "that's personality disorders. Have they finally gotten to diagnose me as BPD?" And yes, they have. And instantly the DID and PTSD diagnoses went out the window. Not only that, but BPD, not Asperger's, is my "main diagnosis" now.

What does this mean? I anticipated it for a long time. In fact, I've always doubted the diagnosis of DID. When initially diagnosed, I was too overwhelmed by some of the consulting psychologist's questions to answer them with the nuance they required. Like, the psychologist asked whether we are aware of what happens when another alter is out. I said no, but the real truth is that we could not have known, since if we lost time, we would only find evidence later and not know that an alter had been out unless we'd had soome awareness of that alter.

I have a very unstable self-image, which goes with both DID and BPD. In addition, I need concrete qualifiers for myself, which I theorize could be an autistic feature. This gets me to identify myself not with abstract characteristics like creative, intelligent or whatever, but with the labels I've been given. I've gotten better over the past year or so at identifying myself with neutral labels like crafter and blogger.

At the same time, I still do have characteristics that are more abstract. I am not just an autistic, a crafter and a woman. I am not just a dissociator or a borderline. Yet what I am in terms of these labels, fundamentally impacts how people see my characteristics. Like, borderlines are generally assumed to be manipulative attention-seekers. If I'm seen as manipulative when a vulnerable alter is out, for example, that means my needs won't be listened to. In contrast if I'm seen as vulnerable when I'm manipulating, I won't unlearn to manipulate. Furthermore, my poor self-image may not alter the core of my mental problems - whether that be a drive to manipulate or emotional vulnerability or both or soomething else entirely -, but it sure alters the way I perceive this core.

Autism, Special Interests, and Elevated Moods

Many years ago, I read an article on Suite101 or About.com or the like that discussed similarities between Asperger's Syndrome and bipolar disorder. The parent who wrote the article described her son's mood swings from elated to depressed. However, she realized that these mood swings were related to whether the son could engage in some special interest.

I find the same thing happen to me, but in my case, it also ties in with the dissociative or emotion dysregulation symptoms. I find that when I'm in a particular personality state, I engage in a certain special interest a lot more than when I'm in another state. For example, Clarissa is my blogger part, who is behind most of the posts on this blog. Annemiek is my crafter. And I at this point can't think of anyone else.

Getting back to mood swings, I must say that I get very elated when I engage in a particular interest for a certain period of time. I uttered the phrase that I would've been manic if I experienced this (mania) at all. In a way, this is extremely inappropriate and comparable to when a currently mentally healthy person talks about "going all OCD". I in no way want to say I suffer from bipolar (hypo)mania, but these mood swings do get problematic at times.

For example, last night I didn't sleep at all. I spent around $80 on useless online services without even bothering to read the not-so-fine print that clearly said these services would not be working for me. I actually took a PRN Phenergan at 2:00 AM, before I went ont he shopping spree, but swung right through it. Phenergan, for those not familiar with it, is a strong tranquilizer or low-potency neuroleptic. I'm now relatively calm again, so again I in no way mean to compare myself to people who have these experiences for weeks on end, but I do see actually how this could become a problem.

So, should autism parents limit their children's special interests in order to prvent this from happening. I don't think this is universally the case, but parents must teach their children about time and money management. I, having been pretty stingy as a child and teen, never really had to learn about this. I always had enough money on my hands anyway. I actually must say I have no clue about budgeting, and really don't know whether I need to learn it yet. I guess so.

Disability Hierarchies

Last week, K at Transcending CP wrote an interesitnb blog post on the "us" vs. "them" mentality non-disabled people have about people with disabilities. I commented and mentioned several ways the disabled themsleves have an "us" vs. "them" mentality towards other disabled people. Today, I want to expand on this by discussing disability hierarchies.

First, there is the hierarchy of severity of one particular disability. For example, at the school for the blind which I went to from fourth until sixth grade, the people with some vision had a lively competition of who could see best. We even used to introduce ourselves as "Johnny who has 20/400". I only actively competed in my first year at this particular school, because in fifthe grade, the partially sighted children (I was going to write "partials" here) and braille readers were merged and I was in a class with only one other braille reader with some vision, who avoided this competition it seemed.

Similarly, among autistic people there is a competition. If you go to Wrong Planet or another Aspie-dominated site, you'll see that most people there don't want to associate with "low-functioning" autistics. As a person who is only "high-functioning" in terms of IQ and who despises this hierarchy, I don't like this. It's like those with "low-functioning" autism have no right to the acceptance that the "high-functioning" want.

Then there are disability hierarchies that cross lines between different disabilities. An example is my having bullied an intellectually disabled child when I was at the aforementioned school for the blind. I apparently felt that intellectual disability made someone less of a worthwhile human being than visual impairment. I don't think I actually thought that deeply, but I did bully this girl because of her intellectul impairment. Adults with physical or sensory impairments do have the ability to actually think about this, and it is reflected in statements like "You may be able-bodied but I am able-minded".

Conversely, the more visible disabilities tend to be viewed as more "real"by some people than developmental or psychiatric disabilities. As a poignant aexample, my psychologist, when describing my disabilities, only mentioned my visual impairment and my slight motor deficits. Also, when I was still on the locked ward several years ago, there was a partially sighted, hard-of-hearing man on my ward who obviously also had severe mental illness. Because of his limited but existent sight and hearing, he was expected to do a few chores that I, being totally blind, was excused from. At one time, I heard a nurse tell him: "You may be twice-disabled, but you are not thrice-disabled."

For a long time, disabled people have been "them". The Black civil rights movement was grounded in the belief that Black people are just as capable as Whites. Then the blind and physically disabled and Deaf movements were grounded on the idea that people with sensory or physical disabilities are, with reasonable accommodations, just as capable as people without disabilities. Now people with developmental and psychiatric disabilities are demanding civil rights, an sometimes this si grounded on the same principles, hence creating a new "them" for those who don't meet the "just as capable" standard. It is my hope that, at one point, we can live without the "us" vs. "them" mentality, but this hope may be idle. After all, as a human race, are we truly evolved enough to recognize each of us as equal? And if we were, then animal rights activists would say that's still not good enough. Rights activism always demands a shift from "them" to "us" but will there ever not be "them"? And if so, will we survive?