BPD: focussing on carers’ wellbeing | facts about BPD
- Most mental illness research focusses on the disorder itself and the experience of the people living with it. But what about the experience of the friends, families and supporters of those people? How are they affected, and what support do they need?
In 2013, researchers at the University of Wollongong searched the academic literature to see what work had already been done to understand the experience and needs of carers of people with personality disorders like borderline personality disorder (BPD). What they found surprised them.
The research paper
By Rachel Bailey and Brin Grenyer. Published in September 2013 by the Harvard Review of Psychiatry.
What the paper says
This paper is about the experience of carers who support people with personality disorders. How does being a carer affect their lives? And how much attention have they received from mental health researchers?
When academic researchers use the term ‘carer’, they’re referring to anyone close to the person living with the illness who ‘provides regular ongoing care, support and assistance’. So family members, friends and other supporters are included.
The authors identified three measures of carer experience: burden, grief and empowerment.
In research, ‘burden’ is a technical term that refers to the extra pressures, stress and emotions that a person has to deal with as a result of an illness.
For carers, burden can include financial pressure, interruptions to your life and plans, and disruption in your home and family. It can also refer to more personal, emotional experiences like guilt, anger, embarrassment and more.
In five of the six studies, carers’ burden was measured using a standard survey called the Burden Assessment Scale. When analysed, the data showed that the burden reported by carers of people with BPD is not only higher than the general population, but is also higher than the burden reported by carers of people with other serious mental illnesses.
Two of the studies also measured grief using a survey called the Grief Scale. They found something very similar: carers of people living with BPD describe living with higher levels of grief than carers of people with other serious mental illnesses.
A third measure, called the Family Empowerment Scale, is a questionnaire used to measure a person’s sense of confidence and control in their family life, their engagement with support services and their community. In two of the studies, carers of people living with BPD reported very low levels of empowerment.
Carers of people with BPD also reported symptoms consistent with clinical depression, and also reported high levels of anxiety. This indicates that carers often deal with their own mental health problems along with those of their loved one.
‘The ﬁndings suggest that carers of persons with BPD experience elevated objective and subjective burden, grief, and impaired empowerment, and that they may also report suffering depression and anxiety.’
Does this apply to all BPD carers?
The authors make a few points about the limits of these findings:
- The studies focus far more on carers of women with BPD than men. Is caring for men with BPD a very different experience? There’s no research to say.
- The studies focus on parent carers, and especially mothers. Is it different for fathers, partners, siblings, children and friends who care?
- The studies are almost entirely focussed on BPD, but there are nine other personality disorders, and it’s not uncommon for someone with one personality disorder to also have another. What would we learn if we did the same research with carers of people with personality disorders generally? The researchers suggest that we might find the same results, but until the research is done we won’t know for sure.
What does this research achieve?
The purpose of the review was to see what the collected research could tell us about the experience of carers of people living with personality disorders. Two important points emerged:
- There’s little or no research on the experience of carers of people with personality disorders outside of BPD
- Carers of people living with BPD experience levels of burden and grief higher than those reported by carers of people with other serious mental illnesses
As the authors say in the final sentence of the report:
‘Developing effective means of support would obviously improve carer well-being and would also, most likely, beneﬁt the patients themselves.’
Borderline personality disorder (BPD) is a widely misunderstood and stigmatised illness.
Apparently according to some sufferers, some people do not understand or even accept that it is an illness. The symptoms of distress associated with BPD can often be dismissed as attention-seeking which creates further stigma.
‘While the symptoms of borderline personality disorder can be quite diverse, for me it was an irrational and impulsive response to different situations,’ says Stephanie, a sufferer of BPD.
‘I was very black and white.
‘One minute I could be totally fine then something would trigger me into a complete suicidal episode and a 24-hour downward spiral.’
Commonly known symptoms include distressing emotional states, difficulty in relationships, fears of abandonment and recurring suicidal or self-harming behaviour. However, people with BPD can also experience an unclear sense of self, impulsive actions, emotional instability, periods of intense anger and difficultly controlling it, paranoid thinking, feelings of emptiness, and dissociation or a disconnection from their own thoughts, feelings and memories.
But, just because someone shows one or two of these symptoms, it does not mean they have BPD. Receiving a diagnosis of BPD can be a complex process and not everyone who receives a diagnosis of BPD presents in the same way.
Symptoms often begin in adolescence or early adulthood. It is estimated that between one and four per cent of the population are affected by BPD. The causes of the condition are not yet fully understood, but are likely to be a combination of biological and environmental factors.
If you or someone you care for has been diagnosed with BPD, this can be a time filled with a lot of conflicting feelings. Receiving a diagnosis can help to explain symptoms but at times a diagnosis can also be confronting.
The important thing here is not the diagnosis or ‘label’. Being given a diagnosis does not define you or your loved one. The diagnosis is a way of describing a set of symptoms that enables effective communication between professionals and the planning of treatment.
BPD is not only overwhelming for people living with the illness, but can also lead to fatigue in carers and health professionals, and a sense that BPD is hard to control.
‘Supporting someone with a mental illness is definitely challenging,’ says Stephanie.
‘Your family and closest friends feel they should be able to support and love you no matter what, but you really test that.’
Stephanie has nothing but praise for her family and her partner who she credits for helping her through the tough times.
‘My loved ones have been amazing and I am so grateful,’ she says.
‘My partner has been incredibly patient with me and he’s taken the time to learn my triggers.
‘He’ll hide under the blankets with me until I’ve calmed down.
‘He knows not to say anything. He knows just to be there.’
A common misconception is that BPD is not a ‘real’ mental illness, rather the symptoms are personality flaws. Stephanie’s story and the experiences of thousands of Australians, shows that BPD is in fact a real condition.
Another misconception is that as BPD is a personality disorder that cannot be treated, or that in general the condition is resistant to treatment. Unfortunately, this misconception can prevent people seeking help.
There are effective treatment options available for BPD. With the help of psychological therapies people can recover and learn how to manage their symptoms.
Despite their differences in approach, therapies for BPD share common features. The therapist and client are committed to work together in an in equal partnership. The therapist pays attention to the client’s needs, emotions, thoughts, and current challenges. The client agrees to play an active role in therapy by working with the therapist and making choices that will boost recovery. Dialectical Behaviour Therapy is particularly helpful in the treatment of BPD.
People with BPD typically experience some, but not necessarily all, of these symptoms. See a mental health professional for a proper diagnosis.
- Fear of abandonment
- People with BPD can sometimes feel intense anxiety, fear or anger at the idea of being left alone or abandoned, even when there’s no real cause for it.
- They might make frantic efforts to try and prevent the perceived abandonment, by begging, fighting or threatening self-harm.
- All-or-nothing approach to relationships
- A person with BPD often views relationships in a black-or-white, all-or-nothing way, where they see the other person as either ‘perfect’ or ‘bad’, with no in between.
- They might demand to spend a lot of time with the other person and share a lot of intimate details early in the relationship, then flip quickly to hatred and feeling the other person does not care enough.
- Uncertain identity
- People with BPD might have sudden changes of mind about their careers, sexual identity, values and types of friends they have.
- They might make a series of extreme life changes and have no sense of who they are or where they are headed in life.
- People with BPD might behave impulsively as a way of easing their distress, despite the possible consequences.
- Some examples of impulsive behaviour are reckless driving, gambling, reckless spending, binge eating, unsafe sex and drug and alcohol abuse.
- Suicidal or self-harming behaviour
- People with BPD might deliberately physically harm themselves as a way to distract or get relief from emotional distress.
- The most common methods of self-harm include cutting and burning. Thoughts of suicide are also common in people living with BPD, due to the intense emotional states they experience.
- Emotional surges
- People living with BPD are often highly sensitive and can have sudden, intense emotional responses, even to minor events.
- Once triggered, it can take a long time for the person to return to a more stable mood.
- Managing these rapid, unpredictable surges in emotion can be overwhelming and leave the person feeling out of control.
- Feelings of emptiness
- People with BPD often describe feeling empty.
- Some describe it as a physical sensation in their chest or abdomen, like a hole that needs to be filled.
- These feelings can occur for a number of reasons, including being let down throughout life, expecting others to let them down, a lack of close relationships and shutting out feelings to stop the emotional surges.
- Inappropriate anger
- Anger is a normal human emotion, but it is often felt unusually strongly by people with BPD, especially in relationships.
- They can struggle to cope with their anger, which can be expressed as aggressive or destructive behaviour or turned inwards, often leading to self-harm.
- Not everyone with BPD is aggressive or self-harms, but the behaviour associated with unchecked anger can cause problems for the person with BPD, their family, friends and others.
- Paranoia & dissociation
- During times of stress, people with BPD may perceive threats or dangers that don’t exist.
- They may worry that others are judging them and respond by withdrawing from social groups or lashing out at people they perceive as a threat.
- People with a history of trauma may be hypersensitive to their environment in order to protect themselves from perceived dangers.
- Dissociation is the feeling of being ‘checked out’, as though you’re not inside your body. It’s a bit like driving on a route that you take every day and getting to your destination with no memory of how you got there or what happened during the drive. Dissociation is a way of coping with distress, and while in certain situations it may be helpful, people can do things while they are dissociated that are dangerous.
Source: Sane Australia