BPD Voices Project, Living With BPD, Scott's Voice
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What could have been?

 

So much of your life is already shaped and defined by the time that you’re 12 years old, you end up taking stuff with you that you didn’t even know you had. That’s what it is like for me, personally, and I am in a constant battle to try and change these things, yet it’s hard when they’re so prominent in my life.

In my experience, I was never someone who “responded” well to medication in order to change my behaviour (quite the opposite really). I’ve been on every drug known to man (and some quite unknown), but all of them carry side-effects which outweigh any kind of benefit that they may offer (most have none), so (for me), they’re not even an option and have not been for many years now.

Drugs/medication out of the way, what else has worked?

Realistically, not a lot!
Out of all of the available “BPD” therapies, I have tried the following: DBT, Schema Therapy, Mindfulness Therapy, Acceptance and Commitment Therapy, CBT (i.e.: Counseling). From these, I have probably been “stuck” in CBT the most, because for many years it was all I could access, so it was either that or death really. From that, I have learned that long periods of any type of therapy do not seem to work for ME.

Out of the therapies I have experienced, I would have to say the most ineffective has been mindfulness. For me, it seems too “unrealistic” for me. To sit with one’s emotions and feel them? Who the hell truly wants to do that for long periods of time (or short, for that matter?).

Mindfulness I have tried over and over, both in individual therapy and group related therapy, but I just cannot (or will not) grasp either the concept or its use. I find that the whole “if you think and believe that something is better than it is, then it will be” concept a little bit daunting, unrealistic and my mind cannot function that way.

I guess (in a sense) it is similar to why hypnotherapy and meditation (which really is very similar to the concept of mindfulness in many ways) does not work for me either – I either will not allow myself to go into that space, or my brain just cannot accept the absurdity of it all.

DBT – I have only briefly touched on this, have been put off it somewhat because that it is heavily mindfulness-focused, which I don’t think would work for me. I have engaged in some brief DBT studies during my time in group sessions, but they have almost always been related to mindfulness practice, which has been unsuccessful.

I believe that much “Hype” and significance has been made about DBT, perhaps because it is widely “accepted” as the primary therapy for many people who have BPD, but for me, I believe that this is untrue. Recently I was present at a talk which concluded that studies shown have not found DBT any more or less successful than the other therapies which are available for BPD.

The acceptance of DBT as a treatment has most likely spread “through the grapevine”, and most likely given it a “good” reputation as the best treatment for BPD.

Counseling, for me, has been somewhat effective in the early years (it was the first and only therapy I could access, even before my diagnosis). Had I not been in counseling towards the beginning, I most likely would not be here now, it did help when I found a very understanding and skilled psychotherapist who was patient enough to deal with me.

However, (there will be many however statements here!) – Counseling ceased working once it came to a significant standstill, it seemed to become locked in a specific time-frame of my life and couldn’t move past it. No matter what techniques were used, my mind was trapped and unable to move forward past that stage. My therapist agreed with me that it was most likely time to end counseling, that there was possibly no further that work that could be done with simple CBT techniques. She did recommend further therapies such as DBT, Mentalization based therapy (MBT), or maybe even Eye movement desensitization and reprocessing (EMDR). I have never had a chance to experience those therapies, so cannot comment on their significant benefits to myself, or anyone else. However, I have heard very positive results regarding the use of Mentalization based therapy in patients with BPD.

So, we come to Schema and ACT (Acceptance and Commitment) based therapy. These were the two most recent treatments that I engaged in, and possibly the ones which helped the most…to a point.

Let me start (and probably finish) by saying that my particular Schema based therapy was most likely administered wrong by the therapist. I believe this to be the case, as all of the studies I have read based around Schema Therapy have all been significantly different to my experience of what I went through with it.

I believe that perhaps my own personal experience with Schema therapy has perhaps changed my mind about the therapy, made me afraid to try it again (but also determined to). I blame the therapist this time, not the therapy, as that is where I believe the technique went wrong.

If someone is supposedly “experienced” with a particular therapy, you would expect that therapy to be administered correctly, yet in my case it was not.

However, the basis of Schema Therapy, and the understanding of the various Schema modes did cause me to think about and process them differently to how I did beforehand. It made sense to me, but I was just taught it wrong by my therapist, if that makes any sense.

We come to Acceptance and Commitment Therapy (ACT), which I did in conjunction with Schema. This was done in a group setting, which took place every week. I found the group setting to be particularly beneficial, due mainly to the fact (I think) that I was able to interact with other humans, which is somewhat (as strange as it may sound), a very rare thing for me these days (always has been really).

The ACT therapy seemed easier to grasp than Schema, as it focused a lot on paper handouts, and board drawing teachings, which I could interact with, weather that bares any significance to the way my brain intercepts and processes information, who knows. I found it especially beneficial when I could relate to a whole room full of other people who were suffering in the same (or similar ways) as me. It made me feel less alone, and therefore it became easier to accept my loneliness as something that others also experienced.

Apart from very brief drug rehabilitation groups many years ago, this was the only group setting I had ever been in, so it was daunting for someone like me who is a very lonely and solitary person. It took me many weeks to even speak openly in the group. I was “told off” for this by my individual (Schema) therapist, and warned that if I did not participate “properly” in the group setting, I could leave it, and perhaps also leave Schema Therapy because of this (it was in my contract that I had to participate in both group and individual therapies).

After this initial drawback, I did begin to open up more widely in group, and because of this, was able to I think gain more out of it. My experience in the group was valued and praised by the other member (I was oldest there), and I shared things in there which were sometimes hard for others to digest, but I think we all did well in this.

It was a shame when I had to leave the group prematurely, because my Schema Therapy failed and I had to “drop out”. I was not allowed another Schema therapist, even though my first one had not been right for me, so I was forced to leave the service in the middle of treatment without having a chance to complete my second/third portion of ACT treatment.

Had I been able to finish, I think I would have gained more insight from ACT, but I believe the Schema (and the way it was dealt to me by my therapist) would have done more harm than good. I become more socially isolated during my time with Schema therapy, I shut down entirely with my individual therapist and began just “going along” with the absurd motions that she forced upon me, just so I could stay in treatment and hope for the best. It didn’t work, and ideally, I should have left long before I did, because I do believe it’s done some pretty permanent psychological damage.

No treatment is better than bad treatment.

So, it brings me to the bare-bones of it all really. What would have happened, had I been diagnosed earlier than I was? I was diagnosed very late in life, which led to many different diagnosis’, medication screw-ups, being shuffled in and out of services, exited from places because I did not “fit criteria”, or was “too unwell” or perhaps (this has always been an issue) “presenting as well”.

When I was first diagnosed, it brought with it clarity, and began my everlasting journey of trying to find therapy which was good, productive, and actually worked! For me, I don’t believe I have found that yet, but have graced the surface of what it may be.

If I had been diagnosed earlier than I was, it would have meant a lot of things. Perhaps I would not have experienced as many suicidal attempts as I have. I most certainly would not have been given the various drugs for other conditions which I did not have. I would not have become dependent upon people as I have. Quite honestly, I could have made a more productive mark on society than what I have.

I would have had insight into my problems from the start, rather than having to sift through the very dark corners of the mental health “system” only to find that there really isn’t anything lurking in there but judgement, finality and disbelief (on their part). My experience with the mental health system both in New Zealand and Australia has been extremely bad, and I cannot stress this enough – clinicians have caused me more harm than good.

This is due to many differing factors, but I think the main one comes down to lack of empathy, and lack of education on the mental health clinicians part. I can honestly say that I have never had a positive experience with any mental health clinicians, which is not to say that there are none, they’re just probably very rare (and most likely wouldn’t last very long in the field, once learning how corrupt and muddy it can become).

The evidence of prisoners (either in jail or institutionalized) who have a diagnosis of BPD certainly does make me wonder also how their life may have panned out, had they been diagnosed early on. Would they have had the tools to process their varying emotions properly, enough to remain “good citizen”, or would they have perhaps still gone on to offend and become lost in the system?

I then must end with this: everyone I have met with BPD has undergone some type of abuse during childhood, whether it be emotional, sexual or otherwise. I’ve never met a person with a diagnosis of BPD who had a really “normal” childhood filled with the love, nurturing and protection that children deserve. There’s always been something in the way there.

If someone with BPD had not been exposed to abuse, would they have gone on to not have BPD? In my case (and I can only comment personally here), I would say no. I don’t feel that if I’d had a normal childhood I would have BPD. This is a controversial topic (to say the least), yet I truly believe this about my own personal journey.

Nobody deserves to have BPD. So why do individuals still think it’s their god given right to inflict this terrible thing upon the young? Who knows, I certainly don’t claim to, and I do not think anybody can possibly answer this question with anything other than – bad people cause bad things to happen, unfortunately (to quote my first therapist).

For many years I believed I was cursed, it seemed no matter what I did, bad things still happened, perhaps I had conditioned myself (or been conditioned) as someone who enjoyed bad things, I cannot answer this either, but I am learning more about it every day.

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