I recently asked sufferers of BPD questions about their perception of the illness, and how they feel they are treated (and failed) by mental health services. Here is a post about the findings.
What is your gender?
98% of those who participated in my survey were female. This does not suggest that borderline personality disorder is a ‘female’ illness, however it makes sense as not only are my platforms possibly more female-supported, but men may also be less willing to discuss their emotions even in an anonymous post due to social conditioning.
How old are you?
56% of those participating were aged between 18 and 21, the most likely period in anyone’s life to be diagnosed with a personality disorder. This is because personalities are thought (sometimes controversially) to be fully formed by the time someone is an adult.
However, a large amount of participants were within the 21 to 25 age range, and 11% were either 15, 16, or 17. No participants diagnosed with borderline personality disorder were below the age of 15. Whilst not impossible to be diagnosed with emerging borderline personality disorder at this age, it’s extremely unlikely for someone who has just gone into adolescence to have a personality disorder label.
How old were you when you first heard about borderline personality disorder?
The biggest minority of participants (42%) were over the age of 18 when they first heard about BPD. This was followed by the 16-17 age group (35%). 24% of participants had heard of borderline personality disorder before the age of 16, including 1% between the age of 10 and 12. No participants reported to have heard of borderline personality disorder before the age of 10.
How did you first hear about borderline personality disorder?
Only 53% of participants actually found out about borderline personality disorder through mental health services. The biggest other factors leading to recognition of the disorder were Google search (15%), the media e.g. films or TV series about it (7%), family history (5%) and the Instagram recovery network (10%).
What did you think about borderline personality disorder when you first heard about it?
- ‘I was scared’
- ‘I thought it meant that the person was messed up’
- ‘That you had multiple personalities at once’
- ‘I was very confused about it all’
- ‘That it was a bad label to have’
- ‘Sounded like me but very stigmatised and not very well talked about’
- ‘That it was like bipolar disorder’
- ‘People who have it are unstable or unreliable’
- ‘An illness that was loathed by other people’
- ‘That the sufferers were scary people’
- ‘It meant that sufferers were violent’
- ‘I didn’t understand it at all’
Did you think that you had BPD before you were diagnosed?
This was almost half and half, with 52% saying no, and 48% saying yes.
How old were you when you were diagnosed?
57% of participants had a working or an emerging diagnosis before they were formally diagnosed.
36% of participants were diagnosed before they were 18, but the majority (56%) were diagnosed between the age of 18 and 21.
What was your reaction to your diagnosis?
- Confusion (60% of participants)
‘I was very confused and didn’t understand how it fit me’
- Relief (47% of participants)
‘I felt relieved because it confirmed what I thought was wrong’
‘It made me feel like my symptoms were validated’
‘I felt like I finally knew what I was tackling’
‘It made me feel more aware and understanding of myself’
- Shame (34% of participants)
‘It made me feel insane and that there was something wrong with me’
‘It made me feel like a fraud because of the stigma around attention seeking’
‘I felt ashamed because of the stigma. I didn’t want other people to know that I was diagnosed with it’
‘It made me worry that I was broken’
‘I felt like it was a throwaway diagnosis and I was a lost cause’
‘It made me feel like a bad person with a bad personality’
‘I felt like my life was over’
- Denial (34% of participants)
‘Anger. I didn’t feel like I met the criteria’
‘I didn’t believe it was valid for how much I was struggling’
‘I feel like this diagnosis didn’t address the trauma that I have been through’
‘I was convinced that there was nothing wrong with me’
What is your opinion on your diagnosis now?
- ‘I feel like it makes sense now. It gives me relief knowing what’s wrong’
- ‘It makes me angry and upset because of the stigma around it’
- ‘I want the diagnosis removed because of the stigma’
- ‘I feel like it doesn’t fit anymore’
- ‘I feel like it doesn’t affect me as much and I am in recovery’
- ‘I still feel alone’
- ‘Has enabled me to get DBT’
- ‘It’s something that a lot of people deal with and it doesn’t make you any less human’
- ‘I wish I was never diagnosed with it’
- ‘Everything gets blamed on this diagnosis, even when it’s completely irrelevant’
- ‘It’s a relief to know that services have helped me and are taking me seriously’
- ‘I worry about the validity of a personality disorder diagnosis’
- ‘It had prevented me getting the treatment that I need for other illnesses’
What factors do you believe have contributed to your development of borderline personality disorder?
- Childhood trauma (75%)
- Bullying (64%)
- Verbal abuse (53%)
- Sexual abuse (50%)
- Hereditary factors (40%)
- Physical abuse (39%)
- Biological factors (39%)
- Childhood negligence (34%)
Other factors noted were poor relationships with parents during childhood, invalidation, certain personality traits, other trauma such as a miscarriage, drug abuse, and being a young carer.
Do you understand completely what a personality disorder is?
This can be quite a confusing term. What exactly constitutes your personality, and how can it be disordered? 27% admitted that they didn’t really know.
What symptoms of BPD are affecting you the most at the moment?
- Emotional instability (92%)
- Emotional intensity (89%)
- Fear of abandonment (88%)
- Mood swings (87%)
- Urges to self-harm (87%)
- Suicidal ideation (85%)
- Unclear or unstable self image (83%)
- Unstable relationships with others (82%)
- Chronic feelings of emptiness (82%)
- Disturbing thoughts (77%)
- Urges to engage in reckless behaviour (75%)
- Explosive anger (61%)
- Brief episodes of psychosis (43%)
- Prolonged episodes of psychosis (17%)
Other common symptoms reported were promiscuity, dissociative episodes, absence of identity, and intense attachments.
Is borderline personality disorder your primary diagnosis?
70% said yes. Personality disorders are usually considered a ‘primary diagnosis’ or ‘main diagnosis’ because they are thought to drive other illnesses.
The 30% who didn’t have borderline personality disorder as their primary diagnosis were most likely to have bipolar or complex post-traumatic stress disorder as their ‘main’ diagnosis, however it varied across the board. Some people were unsure whether their team had specified a primary diagnosis.
What other mental illnesses do you suffer from?
- Anxiety disorder (78%)
- Depression (77%)
- PTSD (41%)
- Eating disorder (24%)
- Sleep disorder (20%)
- Bipolar (16%)
- OCD (15%)
- Psychosis (13%)
- Autistic spectrum disorder (11%)
- Other personality disorder (8%)
- Addiction (8%)
- ADHD (1%)
- Dissociative disorder (1%)
- None (1%)
Have you ever been diagnosed incorrectly with a mental illness prior to being diagnosed with BPD?
38% said yes.
What was the name of your incorrect diagnosis?
- Mood disorder (45%)
- Bipolar disorder (38%)
- Autistic spectrum disorder (12%)
- Other personality disorder (6%)
Do you feel like it’s possible to self-diagnose borderline personality disorder?
65% said no.
Explain why you can’t self diagnose borderline personality disorder
- ‘It’s a complex illness that needs a professional’s view’
- ‘Because a lot of the symptoms overlap, so it could be another illness’
- ‘You can’t see the whole picture. Professionals diagnose without the internal bias’
- ‘Because most people can fit themselves into the symptoms, but not everyone has the severity of BPD’
- ‘It could be incorrect and potentially damaging’
- ‘You can have an idea, but you should approach a professional with that idea’
Has your perception of the general attitude of professionals changed since being diagnosed with BPD?
71% said yes. 3/4 of these commented that the change in attitude was negative.
Explain how professionals have treated you since your diagnosis of BPD
- ‘They have given me less support’
- ‘I sometimes feel like I am being treated as if it is my own fault’
- ‘They have refused to treat me’
- ‘They treat me like an attention seeker’
- ‘I was told about various ex-patients who had successfully committed suicide’
- ‘Wouldn’t admit me to hospital because of my diagnosis’
- ‘They have stopped me from accessing inpatient services, and taken me off my medication’
- ‘It’s not taken seriously’
- ‘They have become very wary and judgemental of me’
- ‘Psychiatrists who are not personality disorder specialist treat me like a naughty child’
- ‘I was treated so much better with just a depression diagnosis’
- ‘I have been offered more help from a specialist service’
- ‘They have been more understanding now that I have a diagnosis’
- ‘I have access to the complex needs service’
- ‘They are now treating me with DBT’
Under what setting were you diagnosed with borderline personality disorder?
- In psychiatric hospital (34%)
- General psychiatric assessment in the community (34%)
- I didn’t even know until I read it on my notes (19%)
- Personality disorder assessment in the community (9%)
- During the process of being assessed and diagnosed with another illness (5%)
56% of participants believed they were not adequately explained about their newly diagnosed disorder.
Do you have faith in mental health services to help you recover?
76% said no. 73% said that they felt that having this diagnosis made them a low priority in mental health services.
In answer to why sufferers felt like a lost cause:
- ‘It’s not something that can be willed away or even treated with drugs’
- ‘They don’t care because there is no straight way to treat it’
- ‘They think that we’re attention seeking and we can stop at anytime’
- ‘They won’t admit me even when I’m on my final straw’
- ‘Some of my side effects aren’t nice, and I feel like I am being punished for it’
- ‘Doctors seem to think it is an attention seeking disorder’
- ‘Suicide attempts are treated like just an impulse to self-harm’
Are sufferers of borderline personality disorder attention seekers?
The majority of participants said no. However:
- ‘Yes, sometimes we do. But we have been neglected by services so when we need help, we have to go to extremes’
- ‘Every human seeks attention off someone. This isn’t inherent to BPD’
- ‘In a sense. But it’s attention for help’
- ‘Yes, but not in a bad way’
- ‘I can have attention seeking behaviours without being intentionally attention seeking’
- ‘Just like anyone else, we need the attention required to stay alive’
- ‘When we say we want to die, we mean it’
- ‘Extra love and care is needed, especially if it was missed from earlier years of childhood’
- ‘It should be called reassurance seeking or help seeking’
- ‘Remember, there is a reason behind every behaviour’
What are your thoughts on sufferers of BPD being called manipulative?
- ‘Not intentionally, but I can be at times’
- ‘I can be when I’m really angry, but so can everyone’
- ‘No, I am just so frightened of being left alone. I feel like I have been manipulative to counteract my fear of abandonment’
- ‘Manipulation is deliberate. Sufferers of BPD don’t mean to do it’
- ‘Sufferers of BPD are actually more likely to be manipulated themselves’
- ‘Manipulation requires planning and thought. BPD makes me act impulsively without fully realising what I am doing’
How do you feel when these terms are associated with your illness?
What treatment have you received for BPD?
- Medication (82%)
- Inpatient treatment (48%)
- Group therapy (45%)
- DBT (44%)
- Distress tolerance (26%)
- Occupational therapy (22%)
- No treatment (14%)
- Specialist treatment in a PD unit (4%)
- CBT (3%)
Which treatment has been the most beneficial for you?
- DBT (dialectal behavioural therapy)
- Inpatient treatment
- None so far
- Group therapy
- Art therapy
What is the next treatment step for you?
The majority of participants said they either didn’t know, or nothing. Some reported accessing therapy such as DBT, completing therapy, move to supported accommodation, or getting a place at a personality disorder specialist service.
Many young sufferers of BPD have been on the ‘Instagram recovery network’. Were you on it/are you on it? What is the general network consensus of BPD?
37% had never had an account. 48% were currently using one, and the remainder had had accounts in the past but were no longer actively updating their online recovery journal.
- ‘When I was younger, it seemed like the thing to have. Now it seems like psychosis is the thing to have’
- ‘Anyone and everyone has it. It’s a popular diagnosis’
- ‘It’s good. There are a lot of people who understand each other very well’
- ‘Some users personally make BPD look bad’
- ‘It’s almost an aim for users to get diagnosed with BPD’
- ‘I think it’s realistic and positive’
What are your experiences of stigma within mental health services?
62% said they had directly experienced professional stigma.
- ‘They told me that I was being dramatic’
- ‘The paramedic said that I was wasting everyone’s time’
- ‘Told that if I wanted to kill myself, I would have done it by now’
- ‘Told that X amount of pills won’t kill me, I would need to take X’
- ‘The Doctor told a Nurse that I was just a borderline and not to give me any attention’
- ‘Told by a police offer that I’d either end up as dead or a criminal because of BPD’
- ‘Symptoms of my other diagnoses were ignored and put down as borderline attention seeking’
- ‘They wouldn’t support me in a crisis because they wanted me to cope on my own’
Have you ever been sectioned for your mental health?
- No (42%)
- Yes, I was brought into hospital on section (35%)
- Yes, I was sectioned whilst I was in hospital (32%)
- Yes, under section 136 (27%)
Have you ever been admitted informally for your mental health?
55% said that they had.
63% of those admitted to hospital with BPD said that they weren’t taken seriously by the professionals in the unit.
84% said that they were discharged before they felt safe.
- ‘I was discharged with no support whatsoever’
- ‘Discharged due to bed shortage’
- ‘Was discharged despite having daily suicide attempts’
- ‘Was told that I was too complex for them, so I was discharged’
- ‘I was discharged off my section with no warning’
- ‘I had attempted to take my life a few days before but they let me go regardless’
- ‘I’m only allowed 72 hour admissions’
- ‘I was extremely suicidal and was admitted again very quickly after being discharged’
- ‘I have been discharged straight off 1:1 treatment’
- ‘After suicide attempts, I was discharged from A and E every time’
63% felt like their inpatient psychiatrist did not have an up to date understanding of borderline personality disorder.
51% felt unsafe in hospital because of the treatment plans made for patients with BPD.
Thoughts on positive risk taking for BPD patients
Positive risk taking is when professionals give you the benefit of doubt e.g. they don’t put you on high obs for self-harm or suicidal ideation, usually because they think that this will make you worse.
- ‘It’s dangerous and it costs lives’
- ‘It angers me as it often leads to death or serious injury’
- ‘I think it’s dangerous but I understand why they do it’
- ‘Depends. It worked for me but it doesn’t work for others’
- ‘I think it has to be done sometimes, but not when someone is in crisis’
- ‘It should be done in small steps’
- ‘If they have a high risk of suicide, this should not be done’
- ‘I’ve seen it go terribly wrong and end in suicide’
Have you ever wanted to be admitted to hospital?
63% said yes.
- ‘I felt like it would be better for my family’
- ‘I wanted to feel safe and have the security and care’
- ‘I just wanted to be out of the way of threats’
- ‘I wanted to avoid going home to an abusive environment’
- ‘At times I have not trusted the community to keep me safe’
- ‘I was scared of myself and what I was capable of’
- ‘I knew I couldn’t stop myself from attempting suicide, but I didn’t want to die’
Do you think that being treated as an inpatient for BPD helped you?
63% said yes.
- ‘If it wasn’t for inpatient treatment, I’d probably be dead’
- ‘My inpatient stay helped to stabilise me’
- ‘They monitored me whilst I was put on new medication, meaning my mum and dad could get on with their jobs instead of watching me 24/7’
- ‘It saved my life but in terms of getting better, no. It was a triggering atmosphere and a superficial environment’
- ‘I came out a lot more confident, insightful, and self-aware. But it was also very traumatic and difficult’
- ‘I developed a greater understanding and learnt healthier coping mechanisms’
- ‘It helped when I was in there, but they discharged me before I was ready’
- ‘It only ever stopped the cycle of self-harm for a short time, and once I got home I spiralled again. Staff at the hospital were also very unhelpful and unsupportive’
What negative comments have you heard from professionals about admitting someone with BPD?
- They are attention seekers (81%)
- BPD patients shouldn’t be in hospital (58%)
- BPD sufferers will kill themselves if they really want to, we can’t do anything (58%)
- BPD patients can’t get better (57%)
- We can’t handle your self-harm, so we have to discharge you (52%)
Talking about BPD and suicide
93% of participants said that they had attempted suicide.
The most common age to have first attempted suicide was age 14 (17%). The youngest was age 10, and only a small number first attempted suicide over 18. This suggests that CAMHS needs to do better early intervention work into personality disorders, rather than pushing this aside as an ‘adult problem’ only to be addressed ‘when you go to adults’.
44% of participants received no psychiatric assessment after first attempting suicide. Only 27% were given even an option for inpatient treatment, yet 56% felt like they needed to be in hospital in order to keep themselves safe.
If you weren’t admitted to hospital following a serious incident, how did you keep yourself safe?
- ‘My parents had to watch me constantly’
- ‘I was under crisis team and went to a day centre, which was helpful’
- ‘I went off the rails and was eventually detained’
- ‘I was too young to be taken seriously or to know anything to do with the mental health system’
- ‘I didn’t tell anyone what happened’
- ‘My parents locked everything away and never left me’
- ‘I had to sleep in the same room as my parents’
68% of participants felt that it was likely that they would lose their life to borderline personality disorder, with 13.6% claiming that it was certain to them that it would happen.
How do A and E services usually react to suicide attempts or serious self-harm?
- Make me feel guilty (65%)
- Discharge me as soon as I am physically well (60%)
- Carry out a short psychiatric assessment (55%)
- Make me feel like what I’ve done isn’t good enough and need to try harder (50%)
- Don’t take me seriously (48%)
- Belittle the severity of what I’ve done (48%)
- Stop me from seeing A and E as a safe and helpful place (33%)
- Threaten to section me (28%)
- Section me (13%)
- Carry out a long psychiatric assessment (13%)
Have you had any positive experiences in A and E for your mental health?
- ‘One nurse actually took the time to make sure that my stitches were neat and left less of a scar, when it didn’t really matter because my arm is full of scars anyway’
- ‘They gave me time to explain how I was feeling and why I had done that’
- ‘The members of staff that had to stay and watch me treated me with kindness’
- ‘Some of the staff are very understanding and know me well’
- ‘They gave me a bed and let me sleep whilst I waited for an assessment, despite being physical well. A support worker came and spoke to me for a few hours’
- ‘They always give me a mental health act assessment and treat me with respect’
- ‘Reassured me that I wasn’t wasting their time’
Under which sector(s) are you currently receiving help for your mental health?
- Community Mental Health Team (59%)
- GP (34.7%)
- No help at the moment (19%)
- Private therapy (12%)
- Crisis team (12%)
- Personality disorder network (8%)
- CAMHS care (8%)
- Private psychiatrist (6%)
- NHS inpatient care (6%)
- NHS funded private inpatient care (2%)
What are the most upsetting thing a mental health professional has said to you about BPD?
- ‘You’re just doing this for a reaction’
- ‘This isn’t a mental illness’
- ‘You look okay, so you must be okay’
- ‘I shouldn’t put it on my records because I’m unlikely to get any help if professionals read it’
- ‘You will never get better and will be in and out of inpatient for life’
- ‘There’s no point treating you if you’re just going to kill yourself anyway’
- ‘They don’t want to hurt themselves. They just want attention’
What’s the kindest or most helpful thing a mental health professional has ever said about BPD?
- ‘I believe you’
- ‘It’s not your fault and we’ll help you to get better’
- ‘Nothing lasts forever and you’ll be supported every step of the way’
- ‘I can see the potential and the motivation in you to recover’
- ‘You and a brave and an intelligent individual’
- ‘It’s difficult and it’s horrible, but it’s also beatable’
What do you think is the biggest myth surrounding BPD?
- ‘That they’re attention seekers’
- ‘That they want to be unwell or that it’s their fault’
- ‘That we are nasty and controlling people in relationships’
- ‘That we’re manipulative and difficult to love’
- ‘That we all have daddy issues and have been through major trauma’
- ‘That it’s an excuse made by dramatic people’
- ‘That you can’t recover from BPD’
- ‘That we copy other people’
- ‘That we are all female and that it’s a ‘woman’s illness”
What do you wish that people knew about BPD?
- ‘It’s a constant struggle’
- ‘The underlying reasons behind engaging in self-destructive behaviours’
- ‘We are empathetic, suffering and deserving of love and compassion’
- ‘Living with this illness is hard work everyday and not just when I’m in crisis’
- ‘We love very hard and will give you our all, so don’t take advantage of that’
- ‘We are kind and loving and just feel too much’
- ‘That self-isolating is a defence mechanism and I need them not to give up on me’
- ‘We fight so f*cking hard every day just to stay alive’
What treatment do you feel like you need for BPD?
The majority of participants commented that they felt that DBT was the treatment that they needed. Other popular comments were the need for trauma therapy, 1:1 therapy, specialist inpatient treatment, more intensive outpatient treatment and different medication.
64% did not believe that recovery was ever going to be possible for them.
Which name do you prefer BPD to be called?
- Borderline personality disorder (64%)
- Emotionally unstable personality disorder (24%)
- Mood disorder (3%)
Other suggestions included emotional intensity disorder and emotional regulation disorder.
Sum up your life with BPD in one sentence
- ‘I hate you, don’t leave me. I’m depressed, I’m ecstatic. I want to die, I’m the happiest’
- ‘It’s been a rocky road but I can now see smoother sidewalks’
- ‘A frustrating limbo between two sides of my brain that don’t work together’
- ‘I’m living with emotional burns. Everything hurts’
- ‘A painful daily battle in order to cope with turbulent thoughts and survive’
- ‘One big, emotional rollercoaster’
- ‘It’s like a nightmare I can’t wake up from’
- ‘Why does everyone keep abandoning me?’
What advice would you give to someone who has just been diagnosed with BPD?
- ‘Read about it, get some books out, join a support group’
- ‘Ignore professionals who treat you like shit and keep reaching out for better treatment’
- ‘Don’t let people belittle you’
- ‘Never stop reaching out for help’
- ‘Don’t take the negative comments on board’
- ‘You aren’t flawed and you can better from this’
- ‘It doesn’t change you. You are the same person you were before you were diagnosed’
- ‘This is your life and you have a right to fight for it’
- ‘You will make it to recovery’