BPD from a carer perspective

About Me

Hi, my name is Carl, below you are going to find out about BPD from a carer’s perspective and hopefully you will pick up some tips and useful information that will help you, in someway, as a care giver to understand and help someone with this disorder. In addition, it is my hope that you find this page helpful to you personally in some way. I am the husband of Rosalind, who has been diagnosed with Borderline Personality Disorder (BPD). At the time of writing, Rosalind and I have been married for almost 20 years, so I have lots of ‘lived’ experience of having a loved one that suffers with this disorder.

Before I start, let me say that this page is a bit longer than I expected it to be, when I first started writing, so feel free to either read it all the way through or simply look for sections that are appropriate to you and jump straight to those. I promise I won’t be offended if you skip the odd bit here and there.

On this page:

The Reason for My Involvement with monarchbutterfly.co.uk

This website was primarily Rosalind’s idea and it is her vision and drive to help to make a difference in the way in which those with BPD are understood, viewed and treated that motivated us to create it. It is due to the poor service she has received alongside her tenacity that convinced her of the need to put together a site like Monarch Butterfly. However, since I have created websites in the past, she enlisted my help to put it together and to make sure it was set up correctly.

While talking through the goals and structure of Monarch Butterfly and looking at other sites online, relating to BDP, it became clear that there aren’t many websites or resources that are written from both a service user and their main carer’s perspective, so it was at that point we decided that it would be a good idea for me to be more involved.

My Disappointment with Mental Health Services

One of the biggest disappointments for me was the attitude of professionals in mental health services. Very few of them seem trained and equipped to deal with the specific challenges that working with someone with BPD brings. Rosalind and I have had to fight her corner on too many occasions and some of the service she has received and some of the attitudes towards her have been diabolical. There is advancement in education however, in my opinion, there needs to be more training, engagement, education and monitoring for mental health professionals that work with those who have this disorder.

Living with Someone with Borderline Personality Disorder

Living and loving someone who has BPD can at times be challenging and frustrating but also hugely rewarding. My wife Rosalind is the most caring person I have ever met and she would drop everything to help a stranger on the street, but a flipside of that is that she is easily disappointed within relationships as she would hope for/expect a similar mind set from others, which can lead her toward a whole host of challenges.

Before Rosalind was diagnosed and before I gained a better understanding of the condition I was always telling her that her standards and what she expects from people are too high, and she shouldn’t expect everyone to have the same standards as she does, otherwise she will constantly be disappointed. I often felt as though she was disappointed in me, and that I was not living up to her expectations and that I could never do anything right. Through learning to understand the disorder better, I now understand Rosalind better so I no longer take these things personally.

One of the first things I had to realise, at a heart level, is that my partner suffers from a mental illness that is just as real as suffering from a physical disease, such as heart disease or diabetes. Like many people, I could empathise with physical ailments quite well, because the issue was clear and it was something physical, something that could often be seen or was widely understood and accepted; however, to understand behavioural, mental or psychological symptoms and issues, was a whole different matter. It was only after really ‘getting it’ at a heart level, that what Rosalind suffered with was just as real and tangible as physical issues, that I started to be able to empathise with how difficult it must be to live in her world. This shift in mind-set was crucial for me because it enabled me to understand Rosalind better and therefore be a better husband and care giver.

It was also important for me to understand that Rosalind didn’t get this disorder through any fault of her own and that it isn’t her choice to keep it. This disorder is hell for her. Prior to this revelation, I often thought she was just being ‘difficult’ and that she was ‘choosing’ not to act in the way I would expect her to. Now I understand that this wasn’t the case at all, and that if she had the skills or ability to behave differently, then she would.

Borderline Personality  and RelationshipsAs you are probably already aware, on paper, borderline personality disorder and fruitful relationships don’t always go hand in hand. However, Rosalind and I are testimony to the fact that statistics aren’t always right and each person is an individual and each relationship needs to be given the right chance to grow and flourish.

I know Rosalind loves me, and I know sometimes she reacts to things, in a way that she is not happy with, but currently feels powerless to control, so I give her lots of ‘grace’ and I am constantly trying to learn more effective ways to communicate with her.

Who Needs to Change?

I have learned that I can’t change Rosalind, but I can change me and in that way change the effectiveness of our communication. LET’S GET SOMETHING STRAIGHT RIGHT HERE AND NOW – I can be a real pain in the backside to live with and Rosalind has to put up with all my little quirks and moods. I think she has it a lot harder than me because she has to deal with her own ‘stuff’ and the challenges of having BPD, plus she also has to cope with living in the real world and her partner’s and everyone else’s mood’s, quirks and peculiarities.

One of the main difficulties I have found is that family, friends, mental health professionals and even myself, do not take BPD seriously enough, at times. We have often looked at Rosalind as if she is just being ‘difficult’ or as if she is just ‘over sensitive’ and has a short fuse. Even now, very few people we know can comprehend that Rosalind has a diagnosed mental health disorder and that her reactions to ‘triggers’ and people are not something that she can currently readily control. They just want her to snap out of it and to be honest sometimes, even now, I wish she would just snap out of it and act ‘normal’ and have ‘normal’ reactions to things – whatever ‘normal’ is…

Throughout this website you will learn more about what it is like for me, as the partner of someone with BPD. I will share little snippets of my thoughts and relate it to my experiences.

I am by no means an expert on BPD. What I am though, is someone who loves and lives with a partner with this disorder, so I bring a real, ‘lived’ perspective that years of studying could never give. Rosalind was diagnosed with BPD in early 2013, after a crisis and admission to a mental health hospital; however, she has suffered with the disorder for as long as she can remember.

Your Support in their Care Plan is Needed

If you are the main carer for someone with BPD your support is vital. You will be needed to support the person you love but also to support the treatment program that is put in place to help them. That will mean supporting their mental health care team and encouraging your loved one to follow the program. That might mean helping to make sure they attend appointments, and that they are taking their medication and engaging with services. Not having the help of a mental health support team is hell, so it’s important that you push through the barriers and get them on side and support them in their work to help your loved one to have an improved quality of life.

If you feel like your mental health team are not providing the support they should, then it’s vital that you push them to do so or you escalate it higher. Make sure they are supporting you and in turn make sure you are supporting them. The end goal for both of you should be for your loved one to get and remain well and that goal is so much more achievable if you are all working as a team.

While your support throughout the recovery process is needed it is also important to note that the person with BPD needs to take responsibility for their own well being and treatment. It is very easy to try and take control and make things happen; however, the only way they are going to get better is if they acknowledge their own issues and destructive behaviours and commit to wanting to change them. If they don’t make this commitment, at some point, then they will fail to engage in a way that could help them to recover.

Dependency Versus Support

Being excessively dependent on you is not helpful for them in the long term. However, it can be emotionally and psychologically difficult for both of you to start to reduce that dependency. You might have become their crutch to lean on and they might have become your gauge on your own self worth. It can actually feel great to be needed and relied on to be there, and it is very easy to unconsciously want to hold on to that. It’s important that we as carer’s learn to let go and give the other person a chance to be more independent and find themselves and to some degree, become independent of us.

Educating Myself About BPD

In order to help Rosalind and to understand her condition I have educated myself about the disorder. Some of this education was classroom based, a lot of it was on-line.

It’s partly through educating myself, that it has allowed me to understand Rosalind and therefore to adjust my behaviours accordingly to ensure we can have a happy marriage that goes from strength to strength.

Borderline Personality Disorder EducationBelow are a few of the things I have done.

  1. Attended a workshop on Understanding Personality Disorder
  2. Looked over all of Rosalind’s course work from 3 training sessions she did with a government backed training program, the Knowledge and Understanding Framework for Personality Disorder
  3. Completed an online course aimed at mental health professionals that work with BPD. The course provided training on the basic principals and criteria for diagnosing  and treating Borderline Personality Disorder
  4. Starting at the end of September 2014 I am booked to attend a 7 week course on Carer Support (one evening a week for 7 weeks). This course isn’t specific to BPD, but it will hopefully provide me with useful skills that will help me
  5. I have spent countless hours researching borderline personality disorder on-line and I have watched hours of videos and read numerous websites and research documentation on the topic

Identify the Triggers

Rosalind suffered with agoraphobia for about 3 years, and during that time, she only went out, unaccompanied by me, on 3-4 occasions, one of those being when she went abroad to see her mum and the name Monarch Butterfly for this website came into being.

To date, the reason for this agoraphobia has never really been explored by mental health professionals, however through educating ourselves and through Rosalind doing a course on metallisation, she came to realise that the most likely reason she didn’t want to step out of the door is because of all the triggers out there that might set her off. Any interaction, whether it be with a shop assistant giving her bad customer service or kids misbehaving badly on the street could potentially trigger her into having an episode.

We now have to be aware of potentially stressful events and situations that might occur and have a plan of how we can deal with them in an appropriate manner. It’s important that as a carer or a friend of someone with BDP that you are aware of potential triggers and stressors so that you can notice any changes in your loved ones behaviour that might be an indicator that they are finding a particular situation difficult. With the help of the right support team around them, they can learn to overcome this, but in the interim, it is a good idea to know when you might have to be extra alert to provide that extra bit of support, if required.

Stay Calm Dude

Stay Calm through your tough timesRemaining calm is a key element to communicating effectively with someone who has borderline personality disorder. This can be a huge challenge when that person is displaying some of the traits and symptoms of the condition. You responding angrily or showing signs of being really frustrated, will probably only add to the problem.

Someone with BDP might often display feelings that seem way out of proportion with the given situation. This was something that I found particularly difficult to deal with. I am naturally a laid back character that isn’t swayed by much so to have a wife who sometimes appears to be super sensitive and who can become fixated on any situation or conversation can be a challenge. Very little gets by Rosalind and her radar always seems to be on and she is very sensitive to what people say and how they say it and her reaction to things can be disproportionate to the event or circumstance.

I have learned that while I might not agree with Rosalind’s thoughts and feelings in any given situation it is important to stay calm, acknowledge her thoughts and feelings and talk them through. More often than not there is something in what she is saying, it just might be that her response to it is out of proportion to the actual event or situation.

To some degree, she is often right in her opinions and her sensitivity radar is often spot on; however, the way she responds to events and situations and the way it effects her and plays on her mind, is unhelpful and I do get very concerned about the anxiety it causes her. That’s why, as a carer, it’s important to spend time and talk things through. Helping your partner to get it all out and speak through why they are feeling the way they are can work wonders for them and help your relationship together to grow and blossom.

There is Help Out There

Rosalind and I have had to fight to get the help we need and, at the time of writing, we are still continuing to fight. However, there is help out there and if you are feeling like there isn’t then please know that things can and will improve, if you hang on in there. Through all the bad or just misguided service we have received, there has been a few bright sparks and a few individuals that have given us faith that professionals within Mental Health Services do understand and care and that they can help.

We all need help sometimesI have my own support worker that I can call on for help, advice and support. My support worker has really helped me practically when I needed it and she has helped sign post me in the right direction, just at the right time.

It was through my support worker that I learned that there were courses I could go on to learn more about BPD and where I could receive, help, advice and training on carer support. In fact it was a leaflet that my support worker had given me that sparked Rosalind into also attending training courses and led to her joining an organisation that is helping to steer the face of mental health and specifically Personality Disorder, going forward.

If you are a carer and you don’t have your own support worker, and you feel you could do with your own help, advice and support, then it’s important you ask about carer support. Services probably won’t tell you about it, you may have to ask. Often as a carer we get left by the way side when it comes to support for us, that was certainly my own experience. It was one year before I was introduced to that support and that too because we had spoken out.

You can also get an advocacy service involved so that you aren’t the only one advocating for your loved one. The percentage of carer’s who go on to become mentally unwell themselves, is high and a major reason for that might be because we try to shoulder everything ourselves until it becomes too much for us and we snap and sometimes we break. Don’t let it get that far. Ask for help for yourself. You deserve help and advice too.

I was lucky in that Rosalind was actually the one that campaigned for help for me, since she was concerned about how things were affecting me. I was too proud with my head buried in the sand to recognise the effects this ‘stuff’ was having on me. I thought I could cope, but looking back, if I hadn’t, had help and support, I don’t know if I would have coped. It’s only by taking care of yourself that you will be strong enough to take care of your partner too.

Our BPD resources page can help point you in the right direction of excellent help and support or please feel free to contact us, if you wish.

There is Hope For Recovery

The good news is that, with the right intervention and treatment, that BPD has excellent recovery rates in comparison with other mental health disorders. So staying optimistic is important and valid because you can be confident that the person can get better. They might always suffer from certain traits but they can learn to manage situations and triggers much better and learn coping strategies that will have a massive impact on their life and help them to function at a level where their life isn’t crippled by the disorder.

My Personal Wish for This Site

I hope Monarch Butterfly can help anyone who has been diagnosed with BPD or has a loved one who has been diagnosed to understand that they are not alone and that there are people out there that care and that want to help. Rosalind and I might not be healthcare professionals, but we are people that have ‘lived experience’ of the disorder and in that way, we know what it is like on the ground level. We understand the everyday struggles, that most professionals will never really ‘get’.

We have spent hours researching to make sure the information on this site is accurate and that we can point people – if they require it – in the direction of the best support and help there is available.

Carer PerspectiveWell, I think I have rambled on for long enough. Throughout the site, you will probably see me chime in every now and again with my thoughts and perspective as a carer. You will know it’s me because you will see the image on the right beside the comment. If you don’t see much of me, keep in mind that I do have a demanding day job and all the responsibilities of a family and other commitments.

I hope you find Monarch Butterfly useful and that it helps you in some way, on whatever journey you are on. We all have to find our own path, but we don’t necessarily need to do it alone.

Speak to you soon

Carl

Before you take a browse around the rest of our site – check this out

Must See Video if You Have a Loved One With BPD

The video below is long but well worth your time. It is all about effective ways of dealing with the behaviour of a loved one who suffers with  Borderline Personality Disorder. It is a lecture by Shari Manning, Ph.D a well respected therapist, author and expert in Dialectical Behaviour Therapy who has focused her career on helping those with BPD and their families. She is speaking to a room mostly full of people who have a loved one who suffers with BPD.

One of the things Shari focuses on is validation which at it’s core is about really ‘getting’ the experience of the other person. Shari also talks about really having an impact with your communication by ‘normalising’ their behaviour – very powerful stuff. Watch this video all the way through and it could change the way you see and communicate with your loved one and it could have a profound effective on your relationship going forward.

How Do You Love Someone With BPD? Watch the Video below to find out!

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