[eksistor]

Hello I'm new to this forum. I am writing here but I have not been diagnosed, but I suspect this might be a likely diagnosis for me. In particular, I am very prone to self-harm, splitting, emotional dysregulation (rage), and self-diffusion. The latter is a source for a lot of shame. I'm reading "Beyond Borderline" to see how much I related, but I thought I would share here and see if anyone would like to share with me their experiences with this disorder and any advice. To be clear, I don't know if I have BPD but it seems possible given the symptoms. So if you see this and anything I say resonates with you, or you just want to take the open invitation to share when you found out you had it, please feel free.

I was never diagnosed fully with anything (somehow treatment always ends before this can be done), but after a couple of hospitalizations in my twenties (I'm forty now), it was thought that I had schizoaffective, then it seemed more likely bipolar and OCD.

Just today my therapist of five years ended it abruptly because I didn't like the psychiatrist she had picked out for me and I had failed to set up an appointment which she had mandated for my continuing to see her. I had finally begun to come around to seeing a psych again (she'd been pushing me to do it for some time now) but I was having trouble finding one I felt comfortable with. And I couldn't shake this mounting worry that she was trying to get rid of me by pawning me off on the psych she picked out (he is also a therapist and trained at the same analytical institute as her). He also revealed over the phone to me that she told him she felt uncomfortable with me, which set off my paranoia like an alarm. But I get it. I think the things I was telling her--SI etc---were just above her paygrade. She had shown signs of trying to get rid of me in the past, too, but the realization was too painful and I think I sort of hid it under some kind of excuse that she just made little mistakes. (It has been extremely difficult letting myself see her humanity, including the possibility that she was just exhausted with me and needed to not be my therapist anymore.) I have been vacillating constantly between seeing her as this gentle motherly figure and an icked out woman disgusted by my presence. I've found that journaling helps me cycle from the rage of the latter and the loss of the former, and back to a (admittedly terrifying) more realistic perspective, that she just couldn't help me anymore, and that she's neither evil nor omniscient. Which means there's no master plan; no one's in charge.

What I'm suffering from a lot at the moment is SI, struggles with alcohol and bingeing/purging, and rage. But what does come up a lot, and it's hard to talk about because it's been so aggressively invalidated by parents in my young adulthood, is these weird optical things, where rooms appear to breathe, or people sort of glow. Sometimes the paranoia sort of mixes with this and I get to seeing either people or some sort of metaphysical presence communicating insults to me. The flip side of this is that at times I have a way heightened sense of self, to the point where I think I'm a spiritual savior. Lately, however, it's mostly the opposite, like a catastrophic feeling that the world is ending. It's a very distinct combination of sorrow and horror. I'm not on any meds and haven't been for many years now. I've made an appointment to meet with a counselor to try and find a new treatment plan. I am open to trying DBT but don't want to do any meds as I am in an academic program with a fellowship and don't want to cause any side effects that could jeopardize that.

Anyway, if you read all that then I thank you and I hope I have not triggered you.

[MuddyBoots]

Welcome to the forums. I’ll try and write a more detailed response later (I’m on a phone at a Dunkin’s right now and I’m not fond of phone typing), but hard to diagnose, conflict with treatment providers, and self-harming/self-sabotaging behavior like you write about are the hallmarks of my and many people’s BPD experience.

There’s a lot of growth you can do independent of “therapists” with workbooks, independent reading, educational videos, support groups/forums, etc. There’s a guy on YouTube dr Daniel fox who has some good info if you feel the need to get into the nitty gritty of the disorder. He has a workbook too that I’m going through right now that can be tough at times but I think is overall worth it.

[MuddyBoots]

Re-reading your post, there are a lot of themes I relate to as someone diagnosed with BPD. Like thinking in the moment my therapist could be "evil" or "omniscient" (AKA idealization/devaluation). The self destructive behaviors (specifically alcoholism and binging and purging--although right now I have been alcohol-free over four months and am more in a restricting mode) I see in myself. Rage--check.

Do you think the optical things and paranoia tend to happen together? I also have been previously diagnosed with schizoaffective (may have been downgraded to bipolar? depends who you ask) but either way have full on hallucinations, but I try to distinguish these from "perceptual disturbances" where things just kinda look trippy like how you describe and that's more from stress and sometimes happens when I dissociate--feel out of body/out of the present.

Regardless of whether you have BPD or something else or maybe "nothing" (as in, nothing described as a neat collection of symptoms in the DSM or ICD but could benefit from treatment), DBT could definitely be of interest to you. You should definitely look into groups or see if there's a therapist that does it near you--whichever you prefer.

I personally typically do better with groups, but the DBT group my clinic ran was a fustercluck and I did not last too long. I did well with an individual therapist until she essentially ghosted me (I don't know where you live, but go somewhere where people are happy with their treatment, not places people are forced to go to when they leave state hospitals on conditional discharges with insurance through social security).

If you don't feel comfortable with a group or ready to trust a therapist yet, you can get a workbook for DBT instead (or in addition for that matter). If you're interested in the story behind the woman who developed DBT, you can read Building a Life Worth Living: A Memoir (Marsha M. Linehan). I haven't read it myself yet, but my last inpatient stay another patient was reading it and said it was good. My provider recommended it as well.

BPD is kind of a new diagnosis for me. I'm 28, been in treatment since 17. First diagnosis was psychotic disorder NOS, then psychotic depression, then bipolar (later changed to schizoaffective, schizophrenia, and back and forth depending on the provider). Then they added PTSD when I was 20-ish. Once I started opening up and the psychosis and mania/depression settled a bit the BPD really became obvious and that wasn't until early last year. Some things that pointed that out where even outside of the mania and depression were I was still very rageful and moody but more like a tornado instead of a hurricane (in terms of duration), my relationships were very unstable and I was incredibly fearful and insecure within them, my sense of self fluctuates like the temperature--constantly shifting goals, values, preferences, I can dissociate a lot (to a point of blacking out and losing time), at times I have an extreme problem with self harm or just self-sabotaging behaviors in general, chronic (generally passive) suicidal ideation... It all was there, but it wasn't screaming as loud as the not sleeping for five days straight and thinking demons were following me in all the black SUVs and running around barefoot in snow followed by the weeks of black depressions for (essentially) the ten years prior so it went missed and I really suffered because of it. I think I didn't want to treat the bipolar because I'd rather deal with the mania and depression than the BPD symptoms (including/esp. that chronic sense of emptiness) honestly.

[eksistor]

Thanks so much for your response, @MuddyBoots. I'll write more later, but lots to think about here. I appreciate it.

[eksistor]

Hi, just coming back to give a more detailed reply. Checking out the Daniel Fox channel. Seems very in depth. Do you think he is right that impaired self-awareness is a hallmark? (This is a real question, not a challenge.)
Btw, any opinion on Kati Morton's youtube videos? Her style may be a bit more 'content creator'-esque, but sometimes I have found some useful information (or at least assurances, for example when I'm stressed about therapy). Maybe it's more comforting than anything else. But that can have value at times.
One channel and group of vids I've found very interesting (and feel free to share any responses if you know these) are from the channel Borderliner Notes, which I think originated as a place for interviews from the film Borderline (which I have not seen--have you?). The talks by John Gunderson and Otto Kernberg I found particularly insightful.
Kernberg and Gunderson seem to think of the symptom of disturbed sense of self as the cohesive factor bringing together the social, affective, behavorial, and even cognitive areas of the disorder. And interestingly Gunderson describes an interpersonal dimension to each of these (not just the social), which maybe supports the idea that an unstable identity is the glue holding it all together.
For myself (again, undiagnosed and simply doing independent research in the wake of a failed therapy), this was the symptom that jumped out at me and made me feel simultaneously deep shame (like I'd been called out) and a kind of recognition, like I was being seen for the first time. It's very curious my therapist never mentioned this because I had talked about self-diffusion (how I learned to call it) in several sessions. (She was possibly distracted by more urgent matters.)
To respond to something you said: yes in my experiences with these perceptive disturbances the paranoia usually goes along with it. There is often a sense of dread, even ecstatic dread, that comes with a weird feeling of being in hell or that reality is just barely masking a horrific scene, which i'm somehow able to see but no one else can. And this is where my experience disagrees with Gunderson who observes the cognitive area of BPD as only tending to come out in isolation. That might mean that I don't have BPD, or that my experiences are slightly different, or that Gunderson is wrong.
Anyway, I appreciate the time you took to share. If any of what I said resonates with you, or perhaps you have some spirited disagreement, feel free to share. But obviously no pressure.

[MuddyBoots]

I think self-awareness is definitely a problem for many BPD folks in the moment but in the grand scheme of things the ones I've met and myself tend to be able to answer the questions accurately once the right ones have been asked--whoever asks them, whether it's someone else or them/ourselves.

I haven't watched Kati Morton's videos in a while, I think how much I liked them depended on my mood honestly haha.

Haven't heard of Borderliner Notes (or seen Borderline).


BPD is a really broad "disorder" so when people go and talk about it there's gonna be a lot that fits and some that doesn't fit. It's kinda like the AA saying "take what you like and leave the rest."

I find in general my BPD is worse when I'm more social just because interpersonal stress. It's kinda miserable and torturous to be alone, but it's chaotic and I feel really insecure with others for me, if that makes sense. People with BPD tend to have an anxious or disorganized attachment style and I'm guessing people with disorganized attachment styles (myself) are more likely to have periods of isolation than those with anxious-preoccupied styles, and maybe the different styles are affected by isolation differently even with the same borderline traits. I don't know, that's a shot in the dark.

[eksistor]

Interesting, re: isolation and being alone. That seems to be a big difference for me as well, as I have issues around attachment but for the most part I require mostly solitude in my life. Also, I thank you for your thoughts on self-awareness; very helpful.

[MuddyBoots]

I think I want to take a second to expand on what I mean on losing self-awareness in the moment. I think our emotions our so big that we can get lost in them, but once the dust settles and that BPD lens isn't so drastically strong, yeah, we can have self-awareness, sometimes painfully-so. Maybe because for us self-awareness can be so painful given what the big emotions can cause, some "choose" to turn a blind eye (whether aware of that or not) and maybe that is what Dr. Fox has observed. Again, just a shot in the dark from someone with BPD that's been in a lot of inpatient and group settings with other BPD folks.

I'm not sure if you've come across this "maybe BPD--maybe all personality disorders--are C-PTSD (which isn't in the DSM even but in the ICD), maybe some are misdiagnosed as one or the other" argument, but of the people who believe CPTSD and BPD/other PDs are different, they think one of the differences between the two is that people with CPTSD tend more towards avoidance and disconnection when it comes to people.

[eksistor]

I relate to what you've said about self awareness in the moment. But for me it seems my interpretation of what's happened just changes over and over. Maybe the first two or so changeovers have the character of a realization or a sudden self awareness. But after it switches back over again, picks up steam, it just starts to become a cycle of intensity, back and forth between the two poles. I think when I'm in a stable trusting relationship I'm able to see that a big emotional storm, if I talk about it, was not what I thought it was (and able to feel some semblance of an objective "what it was"). But outside of that, it can always swing back again the other way, and perhaps the response of that person to whom I confessed will echo back in a sinister tone, creating a whole new storm of emotions. This is just an example, albeit a very dramatic one! Anyway, I have not heard of this idea that PDs are CPTSD. Gunderson has argued that there is some genetic component as well, but how that is to be understood and how it is thought to be activated I don't know (and I wonder how much research into its possible genetic origins isn't mostly speculative).