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Interview with Judy Burke, Founder of Borderline Personality Disorder Carer Support Group: "Sanctuary"

Q & A with Judy from Sanctuary: Caring for a person with Borderline Personality Disorder

Recently, one of our peer workers sat down with Judy Burke, founder of BPD carer support group Sanctuary, about her experiences of being a carer for someone living with Borderline Personality Disorder.

Q: Thanks for speaking with me today, Judy. Would you like to tell me a bit about your background caring for someone with Borderline Personality Disorder (BPD)?

I have a daughter diagnosed with BPD, as well as schizoaffective disorder and a mild intellectual disability. Often people with BPD will have some other mental illness diagnosis, but not intellectual disability, so she is a bit different from other people diagnosed with BPD in that sense. My daughter is fifty, so I've been doing this caring for a long time.

Q: For someone that doesn't know what borderline personality disorder is how would you describe it in a nutshell?

I'm not sure I can do it in a nutshell [laughs]! To an outsider, borderline personality disorder will often look like the person is behaving badly and that they're naughty. I've had people say to me, "Why aren't you tougher on her?" and "If only I had her I'd fix her in a month".

I think the hardest part for people with BPD is that their emotions will be on the extreme end of the scale. Anger can be especially hard to deal with and they will be over the top with it and take a long time to calm down. People with BPD are often very impulsive, with things like shopping or sex, and they often don't think through the consequences of their behavior.

People with BPD have real difficulties with interpersonal relationships, and this is often where their extreme feelings of anxiety, depression and anger stem from. Perhaps, in a nutshell, BPD is an illness of interpersonal relationship issues and difficulty regulating their emotions.

Q: What were some of the early signs that your daughter might be experiencing a mental illness, or BPD specifically?

I wasn't aware of a mental illness until she was eight, when I got worried about her sadness and not fitting in at school. She was eight when she said, "Mummy, I feel like I'm on an island and I'm sinking". My heart sank.

However, looking back now and listening to other carers, it could have been earlier. It is not uncommon to hear carers say "As a baby, I couldn't soothe him or her". [As caregivers] we are often told that attachment of the baby to the parents is what has caused the BPD, and that it's our fault because we've been dreadful parents. However, John Gunderson and other BPD experts have done studies showing that it can be the child who is difficult to soothe, which then shapes the parenting.

Q: Wow, that's really interesting. So one school of thought is that it's the poor attachment that leads to the BPD, and another is that it's the presentation of BPD which makes the child difficult to soothe?

Yes, exactly. And I know that from my own life. My daughter was very hard to soothe from day two, and it's not that I didn't love her; I loved her so much. But I'd try patting, I'd try feeding, I'd try all the normal things, and nothing soothed her. She would still scream and cry. And yes. In the end, I have to admit, I'd say "just take her away from me" And then came the guilt I suffered because of that.

First you have the psychiatrists saying 'it's your fault' and you feel so guilty. However now I know that though she was so loved, my parenting was often not right for her. A child with BPD needs to be treated as a child with special needs which I didn't know then and I made mistakes.

Q: Coming into this conversation, I was thinking that the main impact of BPD on a carer would be the symptoms of the illness itself, but when you look at things like the causes of the illness, it becomes far more complicated than that.

Yes. At first there is bewilderment at our child's behavior, then as we learn more, there is guilt that we may have caused it. There is grief that our child is so sad. Something that is often overlooked by mental health workers is that most family carers have PTSD dealing with the traumas of the illness. Many of us are on constant suicide watch.

Q: People with BPD are often stignatised and discriminated against. Have you experienced this with your daughter?

Oh yes. In the early days, psychiatrists and nurses frequently told us, "She's just a naughty girl behaving badly". At that stage, my husband and I knew nothing about BPD and we believed them. As a result, we thought, "Okay, it's just me. I'm too easy on her". We became sterner and pushed harder for her to just pull her socks up. Of course it only made the BPD worse.

Just recently, my daughter told me that she went to the Emergency Department. People with BPD are often so anxious and distressed that they present at ED's frequently to try to get some help. She told me that she was just about to be seen by a doctor, when someone shouted, "Get her out of here, get rid of her". That is no way to treat anyone, let alone someone who suffers the emotional pain of BPD.

While not in the diagnostic criteria, I believe it's so important to recognize that people with BPD live with a great sense of shame. They think they're unworthy, and when they get told in hospital, "What are you doing here? You're not really sick - you're wasting a bed" you can imagine how much that exacerbates their sense of shame.

Q: I guess sometimes the extreme behavior – what you're seeing on the outside – could mask how they're feeling about themselves on the inside.

Exactly. Their behavior may be the only way they can cope with their emotions when they do not have the words to tell us.

Q: Do you have any positive experiences of accessing the mental health system that you could share?

I must admit I don't have many but there was one particular psychiatrist who was amazing. My daughter was extremely unwell and had presented at the ED. This psychiatrist spoke to her and then rang me. He said, "Your daughter is feeling really distressed because she feels you love your other daughter more than you love her. Would you be able to acknowledge that?". He was teaching me to validate, without me even knowing at that stage what validation was. That changed everything for my daughter. I validated her feeling and her emotional distress went right down, and gave me a sense of peace.

The other time was when my daughter was in the ED, and the nurse came and actually sat down in the waiting room, held her hand, and said "I can see you're really not feeling well and are having a tough time". Again, that compassion and gentle caring was all that was needed for her distress to reduce and to feel calmer.

Q: What are some things you wish you knew from the outset caring for your daughter?

I wish I knew how she was feeling. I wish I'd known it was a proper illness, not just her acting out. You can understand depression and anxiety as an illness. You can understand someone saying "I feel suicidal". But the anger and the shame and feeling "I'm a bad person" I didn't get at all. And I didn't know that things I had done with the best of intentions had hurt her. I didn't know that a child with BPD should be treated a child with special needs. And I certainly didn't know how important it was to validate her feelings. Validation is something we should practice with everyone; not just someone with BPD.

It has been proven to me over and over again how valuable validation is. There was a memory from childhood that my daughter would constantly bring up, involving some dreadful medical tests. Whenever she brought it up, I would say "But I did it with the best of intentions for you". One time I kept quiet, and just sat there and listened to it all, then said, "I'm sorry that you felt so bad, it must have been awful".She never brought it up again.

I think validation is the most important thing for all of us to use. Even if you may not agree with what someone is saying, just listen and acknowledge them, because that will bring their emotions down again.

Q: That sounds like great advice. What support have you personally found most useful as a carer?

Joining a carers' support group was life-changing. Before then, I had been on the brink of collapse. Hearing other carers' stories that were so similar to our own, was very reassuring. It validated that the types of behavior we were seeing in our daughter – from untidiness to reckless spending – were signs of her mental illness. It wasn't just our daughter being reckless or naughty. Then of course there is the love and care and support we got from others in the group.

I've had a lot of counselling. This helped me to know the difference between what is the illness and what isn't, and when to set boundaries. Counselling also helped with the grief of things not being how I thought they would be, and the grief of having a daughter who is so sad and doesn't have a life.

Educating myself on BPD has been very important. BPD very rarely exists as an illness on its own. It is usually comorbid with other disorders, such as schizoaffective or substance abuse. As another BPD guru once told me, BPD trumps all of those (in terms of impact), except in the case of substance use disorders.

Q: What can people expect from attending a Sanctuary meeting for the first time?

My first response is that they'll really feel the caring arms of others around them. We will really understand what they're going through, as nobody else does. They'll learn about the illness, and strategies like validation. We have guest speakers at some meetings who give information on all aspects of BPD speak and how to care for ourselves. They will no longer feel so alone.


To find out more about sanctuary please visit http://bpd-carers-sanctuary.org/

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