BPD Meetup

    • Saturday 14th July 2pm
    • Arrive @ Out of The Blue 1.45pm with Iona to set up – make sure table and chairs are all set up, tea & coffee & snacks available(!!) - make sure the room is easy to find and make arrangements to meet people if there’s any difficulty
    • Group starts at 2pm, finish up at 3pm, stay with Iona til 3.15pm to clean up and leave

Need to work on notes for:

    • Guidelines
    • Introductions
    • Structure of discussion – topics/agenda plan
    • Asking donations for future events
    • Feedback for future events – ideas on how to expand and new things to do
    • Signposting to organisations including CAPS

Guidelines – member agreement

    • Confidentiality is essential – all personal information discussed should remain within the room
    • Mobile phones turned off unless required for specific reasons
    • Talk as much or as little as you feel comfortable doing so
    • Remain non-judgemental, criticism should be constructive & for the purpose of further discussion – everyone’s input is valid
    • Respect everyone’s input and be mindful that we will be at different stages of managing our condition
    • Explain any jargon/acronyms used e.g. MBT (Mentalization-based therapy)
    • Donations to fund venues and future events are welcome but not mandatory
    • Express your views honestly, but calmly & respectfully
    • Taking time out of the group is fine but please let us know that you’re okay
    • No pressure to speak if you don’t currently feel comfortable doing so – everyone is welcome regardless of how much they feel ready to share
    • Additions to, or questions about current guidelines are welcome

Introductions

    • Rich: briefly introduce myself, my own experience with BPD (diagnosis, treatment, subjective exp.) and my reasons for starting the group (lack of official resources, wish to connect people with similar experiences to foster discussion and support each other).
    • Explain that I have a list of relevant topics/a structure for the group discussion but that it is entirely fine for the group to take the discussion wherever they’d like it to go.
    • Explain the environment goal of the group is to be open, welcoming, non-judgemental and positive. We are looking to give a voice and a space to people who often feel alone and isolated with their condition. By learning from each other’s experience we can gain a better understanding of ourselves.
    • Allow others to introduce themselves – try to keep it brief and personal (name) as BPD experience will be discussed afterwards

Structure of discussion – BPD topics

    • Experience of being diagnosed – stories behind the diagnosis (childhood, development, any co-morbid conditions)
    • What was your reaction to the diagnosis? Do you feel it makes sense of your experiences? Has your life changed since diagnosis or remained mostly the same?
    • Has the diagnosis been helpful for you? If so/if not, why? Do you agree with your diagnosis? If not, why? Has the diagnosis helped to explain any of your life experiences?
    • Experience of having BPD – how does it affect other aspects of your life (family, relationships, working, education, friends)?
    • What do you feel is positive about your diagnosis (e.g. increased empathy, capacity for love, strength and resilience, response to art and music, creativity)? What do you feel is negative about it?
    • Experience of being treated for your diagnosis in Edinburgh/Scotland – have you received treatment? What kind of treatment(s) have you tried? Was it easy to access treatment (waiting times etc.) and has it been helpful? Do you feel health professionals understand your BPD/mental health issues?
    • Experience as a person with BPD – which symptoms affect you the most? What helps you manage your BPD?
    • What is your outlook regarding your recovery? Do you feel it is possible to reach a state of recovery – what are the main issues in preventing recovery? Has your diagnosis affected your future goals?
    • Recovery, remission, relapse – do your symptoms fluctuate, get better or worse regularly, or mostly stay the same? Are there any noticeable reasons behind this?
    • Have you ever tried private treatment? Have you been offered/treated with Dialectical Behaviour Therapy?
    • How do you feel about the term “personality disorder”? Is it a stigmatising label?
    • Do you have a view on the origin of Borderline Personality – environmental, genetic?
    • What would helpful to improve BPD treatment in the area?
    • Coping techniques for e.g. - self-harm. Emotional dysregulation. Splitting. Dissociation. - Mindfulness, talking to Crisis Centre/CAPS. Positive support network. Discussion of ideas on how we can develop the group to support our members.
    • Have you experienced stigma regarding your diagnosis/treatment?
    • Do you feel confident in sharing your diagnosis with other people (friends, family, health professionals)? Do you feel like it would change how they view/treat you (making assumptions, viewing all your behaviours and issues as symptomatic even if they might not be BPD-related)?
    • Are there any specific resources/techniques you’ve found useful that you could share with us?

      Asking donations for future events

    • Optional 1GBP donation – currently this will go towards paying for venues and admin as well as helping us obtain more resources to help the group going forward. If you find the group helpful we would greatly appreciate any help you can offer in the form of a donation but this is totally optional.

      Signposting to organisations including CAPS

    • Fingal Dorman from CAPS Advocacy (The Consultation and Advocacy Promotion Service) runs a Personality Disorder project - “More Than A Label” - he can be contacted directly on 07989402612 & fingal@capsadvocacy.org. Website: www.capsadvocacy.org

    • Penumbra – www.penumbra.org.uk – including Plan2Change & Self-harm Project

    • Self Harm Support:
Royal Edinburgh Hospital Self Harm Service:
Information and support around self-harm to improve the care,
services and treatment for people who self-harm admitted to the Royal
Edinburgh Hospital. This includes a support group which meets fortnightly
to offer emotional and practical support to in and out patients of the
hospital who self harm.
Skin Camouflage -
includes a skin camouflage clinic developed
in collaborations with the Red Cross, where you can be taught how
to use specialist creams to cope with scarring or other marks.
Contact:
Merrick Pope
Phone:
0131 537 6390
Email:
merrick.pope@nhslothian.scot.nhs.uk

    • Penumbra Edinburgh Self Harm Project:
The project looks to provide a non-judgemental, young people friendly
and user led support service to young people who self-harm in Edinburgh.
It also explores the needs of family/carers and professional in contact with
them. For young people aged 16 - 25.
Address:
Norton Park
57 Albion Road
Edinburgh
EH7 5QY
Phone:
0131 475 2569
Email:
edinburgh@penumbra.org.uk
Website:
http://www.penumbra.org.uk/how-can-we-help/services

    • Edinburgh Crisis Centre:
The Crisis Centre provides a free phone help line, face to face support
and opportunity for resting overnight up to a maximum of seven nights.
Trained staff will help you to talk about the things causing you distress
and will help you to plan a way forward.
Free Phone:
0808 801 0414
Email:
crisis@edinburghcrisiscentre.org.uk
Website:
http://www.edinburghcrisiscentre.org.uk/

    • Mental Health Assessment Service:
MHAS is an emergency mental health assessment service. It is a nurse-led
service and offers emergency mental health assessments and signposting
to appropriate services and support. This service can be accessed at the
Royal Infirmary Edinburgh and the Royal Edinburgh Hospital.
The service is available 24 hours a day.
Contact:
0131 537 6000

    • Advocard:
Provides individual mental health advocacy in Edinburgh, both in the
community and hospital.
Address:
332 Leith Walk
Edinburgh
EH6 5BR
Phone:
0131 554 5307
Text:
07920 207 564
Fax:
0131 555 6092
Email:
advocacy@advocard.org.uk
Website:
www.advocard.org.uk

    • The Rivers Centre:
The Rivers Centre offers assessment and treatment of psychological
reactions to trauma including Post Traumatic Stress Disorder (PTSD),
major depression and other anxiety disorders. We offer help to people
aged 18 -65 who have experienced traumatic events in adult life.
Address:
Tipperlinn House
Tipperlinn Road
Royal Edinburgh Hospital
Edinburgh
EH10 5HF
Phone:
0131 537 6874
Email:
rivers.centre@lpct.scot.nhs.uk
Website:
http://www.riverscentre.org.uk/Main/HomePage

    • NICE Guidelines:
Borderline Personality Disorder: Treatment and Management
http://www.nice.org.uk/guidance/CG78

    • mentalization Based therapy (mBt)
MBT is a type of psychotherapy created to treat people with borderline
personality disorder. It’s also been found to be useful for people with other
types of mental illness. As the name suggests, it centres on the concept
of ‘mentalization’. Mentalization is simply about recognising what’s going
on in our own heads and what might be going on in other people’s heads.
MBT is intended both to help you to sharpen up your ability to mentalize
and to be willing to use it, especially when you’re feeling intense emotions.

    • Schema therapy
Schema therapy integrates elements of cognitive therapy, behaviour
therapy, object relations, and gestalt therapy into one unified, systematic
approach to treatment.





Misc notes:

Random thoughts: Managing expectations. Accepting limitations. Working within your capabilities. Setting out a clear path towards coping strategies and recovery (within the best of your ability). Developing positive habits. Creative expression as an outlet. Positive social support network. Crisis Centre. Self-care. Asserting your needs and issues as valid and deserving of adequate support & treatment. Making sure Doctors/Therapists/Psychiatrists take your issues seriously and provide adequate care. Feeling validated. Feeling worthwhile and in control of your own decisions and treatment. Accessing peer support. Help with finances and benefits. Being listened to, not judged. Accepting that mental health is as important and as crucial to treat as physical health – they are directly linked. Peer support to realise you aren’t alone – other people understand and sympathise with your experiences. Totally normal to feel apprehensive about joining the group but remember we’re all here for the same reason and we will understand & accept you. Staying hopeful & positive that improvement is possible. Processing emotions and thoughts – remembering that thoughts are just thoughts, you don’t always need to take them seriously. Remember you are a person, not just a diagnosis.

DSM-5 defines three main clusters of personality disorders. Borderline is in Cluster B. The three clusters are:
    • Cluster A: People diagnosed with cluster A personality disorders may find it hard to relate to others. They may behave in a way that others consider odd, eccentric, or paranoid. (Paranoid Personality Disorder, Schizoid Personality Disorder, Schizotypal Personality Disorder)
    • Cluster B: People diagnosed with cluster B personality disorders may find it hard to regulate their emotions. This may cause relationship problems. They may behave in a way that others consider overly emotional, dramatic, or erratic. (Antisocial Personality Disorder, Borderline Personality Disorder, Histrionic Personality Disorder and Narcissistic Personality Disorder.)
    • Cluster C: People diagnosed with cluster C personality disorders may be seen by others as antisocial or withdrawn. They may feel very anxious and behave in a fearful manner. (Avoidant Personality Disorder, Dependent Personality Disorder and Obsessive-compulsive  personality disorder.)


From CAPS:

    • (On PD Project) - The aim of the project is to give people with a diagnosis of personality disorder a voice; to talk to people with experience of personality disorder diagnosis; to find out about their experiences of the condition and using services and to find out what was helpful and unhelpful

    • There are two main resources which describe and classify personality
       disorder; the International Classification of Disease          10 (ICD 10), and the
American Diagnostic Statistical Manual IV (DSM IV). However, these are
clinical descriptions and do not necessarily explain what the every day
     experience of personality disorder diagnosis is like.
    • It can feel like what you say and do is filtered through your diagnosis,
and rather than being taken at face value, assumptions are made
about you before you are even able to explain what’s happening.
    •

-------------------------------

BPD article ideas

    • BPD from a male perspective
    • Dissociation - how it affects everyday life, explain what it is in terms which will be understood by someone with no personal/direct experience of it
    • A relationship between someone with BPD (male) and someone with aspergers (female) from the perspective of the BPD male - difficulties and how to overcome them, advantages, how we come to help and understand each other and learn about each other’s condition, how learning about each other’s condition helps the relationship, the differences between the two conditions and any similarities, a look at the idea of an ASD/BPD relationship in general terms (outlook, compatibility, the nature of it in everyday terms)
    • A letter from a BPD son to a bipolar mother
    • A letter from a BPD male to family (whole family)
    • Growing up BPD and having no knowledge/understanding of what was wrong with you; how a diagnosis has helped and how it can also make things more complicated/difficult
    • Experiences of mental health services (UK) from the perspective of a BPD patient
    • Psychotic/paranoid episodes from a BPD perspective; how they seem to specifically come from BPD in their nature (ie they are often paranoia about what other people think, they often involve self-loathing ideas) - tips to deal with this
    • The idea of ‘personality disorder’ in general from a BPD perspective

Not telling people I’m suffering is making me suffer

When I need help, I’m too far-gone to tell anyone. When I no longer need help so urgently, I do a convincing job - to myself as much as others - that I never needed it in the first place.

Living in the world is difficult when you don’t know what the world is

As I move forward with a concentrated effort to make a good “life” for myself, I’m being held back by dissociation and derealisation: how is it possible to take part in the world when I don’t feel part of it to begin with?

Being abandoned by a psychiatrist

“Wait until you’re older; it should get better” is not a helpful treatment plan for a diagnosis that comes with a 10% suicide risk. Being called “emotionally unstable” leaves a bitter taste in the mouth. Telling my mother that I view the world “like a child” and that my perspective is, well, just, you know, different from what’s “normal” even less so.

Everyday phrases that lead to a Borderline meltdown

Half of all marriages may end in divorce, but I don’t want to hear that. Being “realistic” and “practical” is not in my nature, and recognising this as “silly” or “naive” does not help me.


1. It is OK to want or need something from someone else.

2. I have a choice to ask someone for what I want or need.

3. I can stand it if I don’t get what I want or need.

4. The fact that someone says no to my request doesn’t mean I should not have asked in
the first place.

5. If I didn’t get my objectives, that doesn’t meant I didn’t go about it in a skillful way.

6. Standing up for myself over “small” things can be just as important as “big” things are
to others.

7. I can insist upon my rights and still be a good person.

8. I sometimes have a right to assert myself, even though I may inconvenience others.

9. The fact that other people might not be assertive doesn’t mean that I shouldn’t be.

10. I can understand and validate another person, and still ask for what I want.

11. There is no law that says other people’s opinions are more valid than mine.

12. I may want to please people I care about, but I don’t have to please them all the time.

13. Giving, giving, giving is not the be-all of life. I am an important person in this world,
too.

14. If I refuse to do a favor for people, that doesn’t mean I don’t like them. They will
probably understand that, too.

15. I am under no obligation to say yes to people simply because they ask a favor of me.

16. The fact that I say no to someone does not make me a selfish person.

17. If I say no to people and they get angry, that does not mean that I should have said yes.

18. I can still feel good about myself, even though someone else is annoyed with me.


Hey. We're the same.
Plus: I have a habit of making light of my traumas. As in, when I speak to doctors/psychs, I almost joke about my experiences (if I mention them at all). Play them down, act like it doesn't really bother me. I can talk about the most horrifying events in my life with a smile on my face. This isn't helpful for anyone -- not for me, because it means I never actually deal with the problem (which is probably why I do this). Not for the psychiatrist, because now he's unaware of how seriously I've actually been affected.
I could try to talk about my traumatic past. But then my inner voice interrupts with: "hey. What's so important about you, anyway? Why does anyone else need to hear about this shit? Why should anyone listen? Who cares?".
It's fucked up. As for where it comes from... for me personally, it's just my upbringing, I think. I was a very sensitive child... which my parents viewed as a character flaw to be punished. From a very young age I was discouraged to speak about my emotions, told to shut up, invalidated, treated as an annoyance if I spoke up about my "problems". I wonder if you've had similar experiences, because it seems like an obvious place for the problems mentioned in your OP to have originated.
All that said, OP: your feelings are real and valid. It isn't weak and stupid to still be affected by issues from childhood. Childhood can shape us as adults more than people seem to accept. Whatever happened, you didn't deserve it. No one deserves to be traumatised. Please don't feel like you have to keep things to yourself because your problems aren't "serious" enough. If it feels important to you, then - in a personal sense, at the very least - it is important. Best of luck to you.

------------------------

Richard’s Notes

Out of the Blue Arts & Education Trust
36 Dalmeny Street, Edinburgh EH6 8RG
0131 555 7100


    • Saturday 14th July 2pm
    • Arrive @ Out of The Blue 1.45pm with Iona to set up – make sure table and chairs are all set up, tea & coffee & snacks available(!!) - make sure the room is easy to find and make arrangements to meet people if there’s any difficulty
    • Group starts at 2pm, finish up at 3pm, stay with Iona till 3.15pm to clean up and leave

Introductions
    • Introduce yourself. Explain why you started the group. Talk about your own experience with BPD.
    • Introduce the list of topics, but add that the discussion can go wherever people want it to and that they should feel free to contribute as much or as little as they feel comfortable.
    • Explain that the group is intended to be open, welcoming, non-judgemental and positive. We are looking to give a voice and a space to people who often feel alone and isolated with their condition.
    • Allow others to introduce themselves. Keep it brief: just basic information eg name.
    • Explain that it costs money to do this group and ask for donations (not required).



Rich’s random ideas


Random thoughts: Managing expectations. Accepting limitations. Working within your capabilities. Setting out a clear path towards coping strategies and recovery (within the best of your ability). Developing positive habits. Creative expression as an outlet. Positive social support network. Crisis Centre. Self-care. Asserting your needs and issues as valid and deserving of adequate support & treatment. Making sure Doctors/Therapists/Psychiatrists take your issues seriously and provide adequate care. Feeling validated. Feeling worthwhile and in control of your own decisions and treatment. Accessing peer support. Help with finances and benefits. Being listened to, not judged. Accepting that mental health is as important and as crucial to treat as physical health – they are directly linked. Peer support to realise you aren’t alone – other people understand and sympathise with your experiences. Totally normal to feel apprehensive about joining the group but remember we’re all here for the same reason and we will understand & accept you. Staying hopeful & positive that improvement is possible. Processing emotions and thoughts – remembering that thoughts are just thoughts, you don’t always need to take them seriously. Remember you are a person, not just a diagnosis.