Borderline Personality Disorder and When the Doctors get it Wrong…
You often need a diagnosis in order to be signposted for certain treatments, so in this sense, a diagnosis is more a necessity.
Sometimes though the doctors get it wrong.
You are given the wrong diagnosis, or rather a diagnosis that isn't helpful to you at all, and you experience almost the reverse of all the positives I’ve listed above.
You feel invalidated, misrepresented and as though you are forever going to have a label hanging over you that ‘isn’t you’. I know what it feels like because it happened to me.
I hope that by sharing my experience, I will help others in a similar position and also offer some reflections on the mental health condition Borderline Personality Disorder.
You are given the wrong diagnosis, or rather a diagnosis that isn't helpful to you at all, and you experience almost the reverse of all the positives I’ve listed above.
You feel invalidated, misrepresented and as though you are forever going to have a label hanging over you that ‘isn’t you’. I know what it feels like because it happened to me.
I hope that by sharing my experience, I will help others in a similar position and also offer some reflections on the mental health condition Borderline Personality Disorder.
I was diagnosed with BPD, or as it is often called these days ‘Emotionally Unstable Personality Disorder - borderline type’ in July 2014 following a spell in inpatient for suicidal ideation.
The truth is, it all boils down to the same thing...
You have to fit at least five of the following nine criteria to be diagnosed with BPD:
~ Intense fear of abandonment
~ A pattern of intense and unstable relationships
~ Engaging in impulsive activities in two areas that are potentially damaging, such as unsafe sex, drug abuse or reckless spending
~ Repeated suicide threats, or suicide attempts, and self harming
~ Severe mood swings, which last from a few hours to a few days
~ Long-term feelings of emptiness and loneliness
~ Sudden and intense feelings of anger that is difficult to control
~ Feelings of paranoia, psychotic episodes, or dissociation in stressful situations
I wrote a blog post quite a long time ago explaining how I fitted the criteria for BPD. It can be found here.
The Stigma associated with Borderline Personality Disorder
Unfortunately I experienced the stigma associated with BPD long before I encountered the actual condition. I can say from experience that sadly the stigma exists even within the mental health world. It didn’t take me long to discover that some mental health professionals view BPD patients as difficult to treat, revolving door patients even, manipulative and attention seeking. It was when I was in hospital that I started to see the words ‘undiagnosed personality disorder’ scribbled on various forms and documents about me by psychiatrists. This had never been discussed with me, but it was there for me to see nonetheless. While in hospital I heard the whispers of mental health professionals about me saying ‘she’s very borderline’, or ‘that’s very borderline behaviour’. That’s how I first encountered BPD - as a word of insult in the mental health world. Some saw my frequent dissociative episodes as attention seeking and manipulative, I saw it as being out of my control at the time - I would dissociate in front of other or behind closed doors indiscriminately.
I would hate for anyone else's first attempt at actually asking for and accepting the help they need as attention-seeking.
How I came to receive a BPD diagnosis...
After I was discharged/discharged myself from hospital, I was referred back to my CMHT for a reassessment of my needs, which included having my diagnoses clarified and reassessed so that I could be signposted for appropriate treatment.
I had already received a diagnosis of Complex Post Traumatic Stress Disorder, which wasn't disputed, but after all the whispers and 'scribbled labels' in hospital, I sort of felt that it was only a matter of time before I received a BPD diagnosis.
I had a few sessions with the consultant psychiatrist I was referred to and as I expected, it was only a matter of time before the BPD alarm bells started ringing for him too!
I saw the diagnosis as inevitable because at the time, I fully accepted that my symptoms fit the criteria:
~ I did have a very intense fear of abandonment, which was linked to past trauma
~ As a result, I found it difficult to trust people and let them in, but when I did I felt very attached to them.
~ At the time, I could become quite impulsive when overwhelmed by my emotions and anxiety, though the most this amounted to was impulsive spending and flight type responses.
~ I never made suicide threats but I did make repeated attempts/near attempts and was very preoccupied with suicide plans.
~ My mood was and still is very up and down - later that was found to be more to do with the switching that occurs with Dissociative Identity Disorder and the impact of trauma responses on my mood. I used to starve myself as a form of self-punishment or self harm.
~ Feelings of emptiness and loneliness - I could feel very numb as a result of dissociation and the loneliness seemed to come from my attachment difficulties.
~ I used to become very anxious when angry and feel out of control, but this was actually because I was phobic of anger due to it being associated with trauma and felt unable to cope with it.
~ I would dissociate frequently in stressful situations
You probably can spot the 'trauma' theme in all of this...
When it was confirmed to me that I was going to be diagnosed with BPD, I accepted that I did fit the criteria, but at the same time, I felt very strongly that it just wasn't me.
I made clear that while I accepted the diagnosis, I didn't find it at all helpful to me.
I still maintain that being told you have a personality disorder is actually really insulting.
Everyone who I told about my diagnosis generally responded,
"But there's nothing wrong with your personality..."
I tried to hang onto that.
What I would like to get across is my belief that even if you have been diagnosed with a personality disorder and even if your symptoms do present you with so many difficulties on a day to day basis, that label does not define you.
My main issue with my BPD diagnosis was that it may have given an idea about how I was presenting during that period of time, but it didn't explain the why... why I was like that...
There is a huge overlap between Complex Trauma and Borderline Personality Disorder and what I find useful in a diagnosis is when it points to the cause or the root of the problem - I saw the root of all my BPD symptoms as lying in childhood trauma.
I found it incredibly difficult to walk away from that appointment with a label that I felt just wasn't me, but at the same time, I didn't feel defeated. In fact, even though I was still in a ghastly patch of my life, I made it my goal there and then that I would strive to turn around every single one of those symptoms listed on that criteria so that I could return there in a couple of years time having proven to myself that the label had never and would never define me.
Essentially, that is exactly what I did...
How my BPD symptoms improved...
It's hard to say how my BPD symptoms improved as I never received any treatment specifically for the condition. It wasn't really a real focus for me in my recovery either.
The only way I can explain it is that it simply happened through a combination of factors:
~ Medication - antidepressants stopped my mood dropping to such great lows and took the edge of my anxiety a little
~ Safety and Stabilisation work - I believe this is the main thing that helped me to turn around my symptoms - particularly my more risky and impulsive behaviours. I learnt techniques that helped me to better manage my trauma responses. I found other ways of coping. I always felt that my BPD diagnosis in a way represented me not coping with the trauma I suffered.
~ I became more in touch with my emotions - through therapy I broke down the barriers and phobias I had built towards experiencing certain emotions. I now have less anxiety around emotions I previously struggled with and so am now better able to regulate them.
~ I learnt how to better communicate with parts of myself and cope with Dissociative Identity Disorder - this has been quite a significant focus of my therapy and something I have written a fair bit on, but in relation to the topic of this blog post, it meant that I was better able to manage and navigate my existence, with more working together rather than so much inner conflict, which probably manifested as mood swings.
~ Trauma therapy, in short! - It focused on the root of my problems, by processing some traumatic memories, it meant that I felt overall better about myself and the world around me.
I'm not completely there yet, but with some of my trauma symptoms more settled, the 'BPD stuff' seemed to disappear.
You've not been abandoned...
While I no longer fit the BPD criteria, I would say that I definitely do have attachment difficulties.
A lot of it is generally very internalised, nonetheless, I am often very concerned about how I am perceived by others, I get paranoid from time to time that people don't like me or want rid of me even though they haven't given me much reason to think that, and I also seem to have this persistent concern that people who are important to me are going to abandon me.
A strategy that really helped me to improve on this is that when I face a situation in which I become worried that someone has abandoned me, I try to think about all the other alternative explanations for what has happened...
For example, a situation that I find emotionally difficult is when I text/message someone and they don't message back.
My mind used to always jump straightaway to the worst case scenario:
-They hate me
- They want nothing to do with me
- I'm too needy
- They have better things to do than listen to me
- Maybe something awful's happened to them
- I've been abandoned
When I started to enter this negative cycle of thoughts, I would try to consider the many alternative and actually more realistic explanations:
- They're really busy
- They might be facing a personal crisis of their own
- Their phone might have died, they may not have seen the message etc.
- They might not have time for you right now but it doesn't mean you're not important to them
I usually find one of these alternative explanations tends to be the case rather than my 'help I've been abandoned' script!
When you encounter another event in which you feel abandoned, it can help to recall past scenarios where you thought something awful happened, but it didn't turn out to be the case.
The only way I can explain it is that it simply happened through a combination of factors:
~ Medication - antidepressants stopped my mood dropping to such great lows and took the edge of my anxiety a little
~ Safety and Stabilisation work - I believe this is the main thing that helped me to turn around my symptoms - particularly my more risky and impulsive behaviours. I learnt techniques that helped me to better manage my trauma responses. I found other ways of coping. I always felt that my BPD diagnosis in a way represented me not coping with the trauma I suffered.
~ I became more in touch with my emotions - through therapy I broke down the barriers and phobias I had built towards experiencing certain emotions. I now have less anxiety around emotions I previously struggled with and so am now better able to regulate them.
~ I learnt how to better communicate with parts of myself and cope with Dissociative Identity Disorder - this has been quite a significant focus of my therapy and something I have written a fair bit on, but in relation to the topic of this blog post, it meant that I was better able to manage and navigate my existence, with more working together rather than so much inner conflict, which probably manifested as mood swings.
~ Trauma therapy, in short! - It focused on the root of my problems, by processing some traumatic memories, it meant that I felt overall better about myself and the world around me.
I'm not completely there yet, but with some of my trauma symptoms more settled, the 'BPD stuff' seemed to disappear.
You've not been abandoned...
While I no longer fit the BPD criteria, I would say that I definitely do have attachment difficulties.
A lot of it is generally very internalised, nonetheless, I am often very concerned about how I am perceived by others, I get paranoid from time to time that people don't like me or want rid of me even though they haven't given me much reason to think that, and I also seem to have this persistent concern that people who are important to me are going to abandon me.
A strategy that really helped me to improve on this is that when I face a situation in which I become worried that someone has abandoned me, I try to think about all the other alternative explanations for what has happened...
For example, a situation that I find emotionally difficult is when I text/message someone and they don't message back.
My mind used to always jump straightaway to the worst case scenario:
-They hate me
- They want nothing to do with me
- I'm too needy
- They have better things to do than listen to me
- Maybe something awful's happened to them
- I've been abandoned
When I started to enter this negative cycle of thoughts, I would try to consider the many alternative and actually more realistic explanations:
- They're really busy
- They might be facing a personal crisis of their own
- Their phone might have died, they may not have seen the message etc.
- They might not have time for you right now but it doesn't mean you're not important to them
I usually find one of these alternative explanations tends to be the case rather than my 'help I've been abandoned' script!
When you encounter another event in which you feel abandoned, it can help to recall past scenarios where you thought something awful happened, but it didn't turn out to be the case.
Attachment is something that is very deeply rooted, but I think I've found that having the experience of people sticking around, even through difficult times, can offer a great deal of reassurance.
It really can improve - I do still get very anxious about this kind of thing, but I have noticed that my mind doesn't jump to the worst case scenario so much anymore and I don't tend to need as much reassurance as I used to.
Ridding myself of the BPD label - getting my diagnosis revised...
It really can improve - I do still get very anxious about this kind of thing, but I have noticed that my mind doesn't jump to the worst case scenario so much anymore and I don't tend to need as much reassurance as I used to.
Ridding myself of the BPD label - getting my diagnosis revised...
To be absolutely honest, my BPD diagnosis actually wasn't something I thought about very much.
As far as I was concerned, it felt increasingly irrelevant to my life, as two years down the line after receiving the diagnosis I didn't really have any of the symptoms anymore.
My only real issue was that when I was referred to other health care services and was put in contact with new health care professionals, I seemed to carry this label with me that I felt actually now wasn't a very accurate representation of who I am and how I present.
At the end of the day, a diagnosis is just a bit of paper, I didn't want to feel as though I was making a big fuss about nothing, but at the same time though I believe that it is important to feel as though you are accurately represented, especially if people are going to read something about you before they've even met you.
I therefore brought it up with my therapist and she was actually quite surprised that I had been given the diagnosis in the first place as she does a lot of work with personality disorders and having got to know me well after quite a long time of working together, she was quite confident that I didn't have a personality disorder!
It actually felt really validating to have someone say 'I don't think that's you either'.
Interestingly, when attending a local mental health planning meeting, I met another patient who had also received a BPD diagnosis from the same mental health service as me yet she and her carers felt that she did not meet the criteria at all and it was not the correct diagnosis.
Perhaps my CMHT like dishing out BPD diagnoses?!
Anyway, based upon the conversation with my therapist, I arranged to have my diagnosis reviewed by my psychiatrist and my therapist shared her views with him before the meeting.
The actual review with my psychiatrist turned out to be a bit of a car crash of an appointment.
It was all a bit chaotic as I saw one of my psychiatrist's junior doctors who I'd never met before, the psychiatrist was meant to join the meeting, but didn't, the junior doctor went off to find him and left me in a room for what felt like ages, the psychiatrist couldn't join the meeting in the end, but he told the junior doctor his verdict.
The long and short of it was that the psychiatrist agreed to revise my diagnosis as I no longer fulfilled the criteria of BPD.
A letter was sent out to my GP confirming the change in diagnosis.
I got the outcome I wanted and it was all fairly straightforward.
I think it is important to remember that, like with anything, in mental health care you can ask for a second opinion if you don't agree with what someone has said about you - it is important to feel understood in order to be on board with whatever treatment is offered.
'You can't get better from BPD!'...
Well I say different!
While I was happy with the outcome of my diagnosis review, I wasn't necessarily happy with the way the revision of my diagnosis was explained to me.
I know an element of it may have been the doctors trying to cover their backs over me being given the diagnosis in the first place.
However, I was told that the reason that I do not have the condition is because I managed to 'reverse the symptoms' and according to them 'BPD is not something that people can get better from'.
They went on to tell me that I still have some of the character traits of BPD and always will do, but I don't have the condition.
I felt that this attitude sent out an appalling message!
I think it an absolute travesty that some mental health professionals send out a message that there are some conditions that you can't get better from - it doesn't make for an environment of hope.
I truly believe that whatever your diagnosis, there is always reason to hope that you can get better, or at least that you can improve your quality of life with the condition not having such an adverse effect on your life.
Maybe I'll leave you to make your own mind up...
Was I given the wrong diagnosis?
Or did I have Borderline Personality Disorder and prove that recovery is possible?
Whatever the truth, all I can say is that I feel a lot better for it!
I want to get across the message that if you have a diagnosis of Borderline Personality Disorder, or indeed any mental health diagnosis for that matter, it does not have to define you and it does not have to feel like a life sentence. Your life can and will get better...
Love and Strength,
The One Day Seeker.
As far as I was concerned, it felt increasingly irrelevant to my life, as two years down the line after receiving the diagnosis I didn't really have any of the symptoms anymore.
My only real issue was that when I was referred to other health care services and was put in contact with new health care professionals, I seemed to carry this label with me that I felt actually now wasn't a very accurate representation of who I am and how I present.
At the end of the day, a diagnosis is just a bit of paper, I didn't want to feel as though I was making a big fuss about nothing, but at the same time though I believe that it is important to feel as though you are accurately represented, especially if people are going to read something about you before they've even met you.
I therefore brought it up with my therapist and she was actually quite surprised that I had been given the diagnosis in the first place as she does a lot of work with personality disorders and having got to know me well after quite a long time of working together, she was quite confident that I didn't have a personality disorder!
It actually felt really validating to have someone say 'I don't think that's you either'.
Interestingly, when attending a local mental health planning meeting, I met another patient who had also received a BPD diagnosis from the same mental health service as me yet she and her carers felt that she did not meet the criteria at all and it was not the correct diagnosis.
Perhaps my CMHT like dishing out BPD diagnoses?!
Anyway, based upon the conversation with my therapist, I arranged to have my diagnosis reviewed by my psychiatrist and my therapist shared her views with him before the meeting.
The actual review with my psychiatrist turned out to be a bit of a car crash of an appointment.
It was all a bit chaotic as I saw one of my psychiatrist's junior doctors who I'd never met before, the psychiatrist was meant to join the meeting, but didn't, the junior doctor went off to find him and left me in a room for what felt like ages, the psychiatrist couldn't join the meeting in the end, but he told the junior doctor his verdict.
The long and short of it was that the psychiatrist agreed to revise my diagnosis as I no longer fulfilled the criteria of BPD.
A letter was sent out to my GP confirming the change in diagnosis.
I got the outcome I wanted and it was all fairly straightforward.
I think it is important to remember that, like with anything, in mental health care you can ask for a second opinion if you don't agree with what someone has said about you - it is important to feel understood in order to be on board with whatever treatment is offered.
'You can't get better from BPD!'...
Well I say different!
While I was happy with the outcome of my diagnosis review, I wasn't necessarily happy with the way the revision of my diagnosis was explained to me.
I know an element of it may have been the doctors trying to cover their backs over me being given the diagnosis in the first place.
However, I was told that the reason that I do not have the condition is because I managed to 'reverse the symptoms' and according to them 'BPD is not something that people can get better from'.
They went on to tell me that I still have some of the character traits of BPD and always will do, but I don't have the condition.
I felt that this attitude sent out an appalling message!
I think it an absolute travesty that some mental health professionals send out a message that there are some conditions that you can't get better from - it doesn't make for an environment of hope.
I truly believe that whatever your diagnosis, there is always reason to hope that you can get better, or at least that you can improve your quality of life with the condition not having such an adverse effect on your life.
Maybe I'll leave you to make your own mind up...
Was I given the wrong diagnosis?
Or did I have Borderline Personality Disorder and prove that recovery is possible?
Whatever the truth, all I can say is that I feel a lot better for it!
I want to get across the message that if you have a diagnosis of Borderline Personality Disorder, or indeed any mental health diagnosis for that matter, it does not have to define you and it does not have to feel like a life sentence. Your life can and will get better...
Love and Strength,
The One Day Seeker.
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