Who the hell am I to say this? Well, I’ve worked in mental health services for over 25 years. The last 10 have been in services specifically for people who hurt themselves and want to die. The people I’ve worked with have almost always had a diagnosis of Borderline Personality Disorder or emotionally unstable personality disorder as it used to be called in the UK. There was a time that I thought the diagnosis was useful and people just needed to understand it better, now I’m convinced that it does more harm than good.
Marsha Linehan is the creator of Dialectical Behaviour Therapy. It is probably the most researched therapy for BPD and the only named therapy in the UK NICE guidelines for BPD. Linehan says:
“I tell my patients if you end up in the Emergency Room for a medical disorder for gods sakes do not tell them you meet criteria for Borderline Personality Disorder. Do not tell anybody. You’ll be treated differently and many, many mental health practitioners wont see someone who meets criteria for Borderline Personality Disorder”
I’m trying to think of another diagnosis where one of the leading experts would advise people to keep their diagnosis secret in order to avoid mistreatment from health professionals. There can’t be many.
I was prompted to write this after I was doing some training and a clinician who worked with students in a university kept meeting people who were asking for a BPD diagnosis. They’d seen something on Tik Tok, had a google, and they were convinced they’d found a name for the discomfort, stress and pain they were experiencing. The pain is real, but this blog is an attempt to explain why you might not want to describe it as BPD.
Reason 1 - Mental Health Staff will Treat You Worse
The Paper “Personality Disorder: The Patients Psychiatrists Dislike was written in 1988. I’m not aware of any other diagnosis where you could write a paper with a similar title. The article highlighted the negative views that psychiatrists hold towards people who get this diagnosis. While this was 40 years ago, the study was repeated and found similar results. These negative views aren’t limited to psychiatrists. An Australian review of stigma for around BPD said:
"the diagnostic label of ‘BPD’ elicits particular negative beliefs and emotions in psychiatric nurses"
"these beliefs extend to other staff, such as psychologists, psychiatrists and social workers"
"clinicians report having particularly negative beliefs about young people with BPD, including erroneous beliefs about trustworthiness and dangerousness, and that they are ‘bad, not ill’.
"The label of BPD does not evoke the same stigma in the general community as it does in mental health clinicians”
That last point is interesting - the stigma is higher in mental health clinicians than in the general public. Getting the diagnosis means your friends and family should treat you the same, its only the people who are supposed to help that will think less of you.
What will this look like?
Probably the most common ideas are that people who get a personality disorder diagnosis are manipulative, attention seeking, split teams and sabotage their treatment.
Manipulation - Because of the diagnosis, people will stop believing you. Everything you say will be questioned, from why you were 5 minutes late to whether the awful experience you described actually happened. Jay Watts brilliantly describes this “testimonial injustice” here.
Attention Seeking - Here, every aspect of your behaviour will understood as an attempt to draw attention to you. This will include hurting yourself, being loud, being quiet, leaving early, being first….almost anything that differers from a victorian ideal of a demure woman will immediately fit into the attention seeking box. If you come to your appointment on roller blades, a green wig and a suit covered it glitter, attention seeking might fit. When you are crying because of the intensity of what you’re feeling, it probably won’t. Because you will be understood as attention seeking, rather than getting sympathy or empathy from staff, you’ll probably find they’re annoyed with you.
Splitting - People will see you in this way when you do anything that either suggests you feel warmly towards one or more members of staff or if you suggest that you find some less friendly than others. If you have any other diagnosis people won’t take any notice but if you have this diagnosis, when you want to spend time with the person who smiles at you more than the one who scowled, this will be you splitting the team. You are expected to have exactly the same relationship with every member of staff in exactly the same way they don’t. If you complain about something egregious someone has done, 1 - they wont believe you (see manipulation), 2 - They will simply assume splitting is in place. At it’s worst, this will be what people decide is happening when you ask not to be helped by someone who reminds you of people who have hurt you.
Sabotage - Almost any time you do something that doesn’t fit with the clinicians ideas of recovery and improvement, it will be assumed you’re doing it on purpose. That thing you did yesterday that you bitterly regret - people will think you did it deliberately. Again, they will be annoyed with you for this.
Some people think I have some expertise in this area. It’s worth saying that my undergraduate training didn’t mention personality disorder, nor did it mention that some people I worked with would want to hurt themselves and to die. I had to learn about “personality disorder” on the job from others who hadn’t had any training. I can assure you that all the above is what I was taught by my peers, and what spread myself for a good few years before I was taught differently.
Now you might have really significant difficulties in your life, but even if you had none you’re very likely to get upset and annoyed when people treat you in the way described above. When you react to this treatment, everyone around you will be furious and all your reactions will be fitted into the boxes above, which will irritate them more.
Reason 2 - It impacts everything
The Welsh charity Platform has an archive of awful experiences people with a BPD diagnosis have gone through, but the things I repeatedly hear about are:
1 People having wounds stitched in hospital without anaesthetic,
2 All visits to the GP seen as attention seeking so serious illnesses are missed and pain relief not given
3 Immediate risk referrals are made when you become pregnant
Reason 3 - It doesn’t identify a specific problem
As you need to get 5 out of 9 criteria to get a BPD diagnosis, there are 256 different flavours. It means that someone can have criteria 1-5 and someone else criteria 5-9. They then have the same diagnosis, prognosis, care plan….but they only share 1 criterion.
The Royal College of Psychiatrists gives guidance on the thorough assessment required before someone is given a BPD diagnosis. I suspect this is because how often (in my experience) the diagnosis is given based on a brief contact and gut feeling. I generally find that to get the diagnosis you generally only have to meet 1 criteria from the diagnosis - doing something that is bad for you, and 1 separate criteria - being a woman. An example of the free and easy way the diagnosis is given comes from Aaron Beck, the creator of CBT. He had two therapists talking
“I’m having trouble with my patient with BPD”
“How do you know they have BPD?”
“Because I’m having trouble with them”
Far too often I see a diagnosis made based on the poor quality of the relationship the clinician has with the patient, rather than a thorough examination of peoples history and current circumstances with reference to the criteria.
Comorbidity is very high in people with a BPD diagnosis. Almost everyone has other mental health diagnoses too. Research shows if you meet the criteria for one personality disorder, you’re likely to meet the criteria for others too.
In some ways a BPD diagnosis is like saying “something is wrong” without being able to identify the specific thing to help with. That means it often doesn’t lead to help that is helpful. If the point of diagnosis is to open doors to help, the diagnosis of BPD tends to shut doors and close the minds of those who would help those with other mental health difficulties.
Reason 4 - It misses specific problems
A large proportion of people who get a BPD diagnosis have had awful experiences in their lives. It is the diagnosis most associated with childhood abuse. History tends to be cut off when this diagnosis is made and people find it very hard to access therapy to help manage their traumatic experiences. While everyone I work with is given a BPD diagnosis, in reality their difficulties could frequently be better explained in terms of PTSD and Complex PTSD. In addition, the dustbin diagnosis of BPD will contain many people who are neurodivergent. Trying to argue this once a BPD diagnosis has been given is near impossible. There is a danger that you’re seeking help because you have some trauma in your life and this diagnosis will add to that trauma rather than supporting you to address it.
Reason 5 - You will probably end up taking medication
There is nothing wrong with taking psychiatric medication. I’ve been prescribed it myself, I’ve had some very paranoid experiences on diazepam and welcomed things to help me sleep during a stressful period of my life. Unfortunately, there is no licensed medication for BPD. What this means is that when high quality studies have taken place with some people taking the medication and some taking something else, the medication has never had a significantly better result than not taking it. Despite this, people with BPD have high levels of polypharmacy - this is where multiple medications are prescribed for the same issues.
I think those are the main reasons I’d encourage people to be wary about seeking a BPD diagnosis. Psychiatrists that I think a lot of say “I explain the diagnosis to people in a really warm and kind way and they leave really happy with it.” I do not doubt that for a moment. The problem is when those people come into contact with others who are not that psychiatrist.
I’m told people ask for the diagnosis, I’m sure they do. Whether those people are fully informed about the stigma and discrimination they will experience as a result of getting that diagnosis is another question. Well, if they read this at least they are making an informed decision.
I’m going to try to avoid getting a personality disorder diagnosis, so what should I do?
Some tips….Do tell people that you want to avoid this diagnosis. If you’ve had horrible experiences in your life, you might feel that Complex PTSD explains your problems better, you might feel that you may be neurodivergent. You might work with staff to find a way of describing your difficulties that doesn’t come with all the stigma. While there are therapies for BPD few of them will only work with people who have a BPD diagnosis. Given that the biggest indicator of whether therapy will work is the quality of the therapeutic alliance, you might even be better off finding a therapist you trust, who feels safe, who describes your difficulties in a way you agree with and who agrees with you a way to work on your difficulties that makes sense.
People can be very literal and the difficulty with having ‘personality disorder’ written next to your name is that people treat you as if your personality is disordered.
It isn’t.
With 100% of the people I work with, their difficulties make sense in terms of what they have lived through, what happened, what didn’t, what life has taught them about themselves, other people and the world. You are not disordered.
There is a chance that you feel you are disordered. You might feel your personality is black, broken and flawed. If you find a mental health professional who helps you think that your’e right, you might be better off fleeing from them.
Lastly, and I cant emphasise this enough, if you are suffering do seek help. Do share you difficulties, your suffering and your pain. I am not suggesting for one moment that you don’t try to get some support or relief. I am warning of what happens (in my experience) when a BPD label is given and giving you some information so you can make a more informed choice. Hope it helps.
(And while I often say that the stigma around BPD is higher mental health staff than in the general public, Hollie Berrigan pointed me at the Unilad story that the image above is taken from just as I was publishing this. A diagnosis associated with serial killers. Not the diagnosis most associated with childhood abuse, serial killers. Good grief.)