What I want for People with a BPD Diagnosis: Honesty, Warmth, Acceptance & Choice

Here are some of the things I think are important for people with a BPD diagnosis right now.

These are just my thoughts. As I've always said, I speak for myself only, I don't speak for others. Most of the things I'm going to reference as helpful are relational, that's to say, they come into being through being with others. It was never a surprise to me that the main 'treatment' for BPD is psychotherapy and not medication. I've put 'treatment' in inverted commas because this word doesn't really work. A word that would work much better would have to capture the way a person first reimagines, and then somewhat reconfigures, their relationship with themselves and with others.*

When I say relational, I'm mostly using that word to describe about an individual's relationships with others, but also the relationship a person has with themselves. I see these two things as linked though. Think of a baby: a person is formed in relation to others. I have become the person I am today through the people I've met, connected with, known— and who have known me. These moments have been amongst the most precious in my life.

It's been painful and embarrassing to me to accept this over the years: that the challenges associated with this diagnosis tend to come alive in the context of relationships. If I lived in a cave alone the struggles associated with my BPD diagnosis would not exist.

Fear of abandonment, a terror of rejection, excruciating feelings of being alone, a sense of 'un-belonging'. Paranoia about being hated / excluded / ridiculed, emotions that change depending on how connected or disconnected an I feel to others, depression that follows whenever something has happened and I've interpreted that being unlovable, shameful, disgusting.

But without further ado, let's get going.

1. Honesty- Be open with me, let me be open with you (if possible)

   Whether you are a mental health professional working with me or someone in my life such as a friend or a family member, I want honesty. Mental health professionals, please don't give me a diagnosis without telling me (this happens to too many people who have a BPD diagnosis). Don't hide things from me about my care.

   
   

   I appreciate it so much when people close to me in life speak openly with me if something is difficult or uncomfortable in our relationship. I want to know for two reasons. Firstly, so I can stop worrying about whether there is 'something wrong'. Secondly, if there is 'something wrong', I would appreciate the chance to try to improve it.

   
   

   I also appreciate the chance to say if anything is upsetting me too and be listened to if and when I do.

2. Warmth and Connection

   Too many people with this diagnosis are treated coldly and as if they don't need, or deserve, care— by professionals, in the media, by a general public lacking in education on what this diagnosis actually means.

   
   

   I want a mental health system in which people with this diagnosis are seen as worthy of having warm, positive relationships. There are too many people who have been called attention-seekers and turned away from support or basic human kindness when they are in distress.

   
   

   The was warmth between me and my DBT therapist meant I could trust in the therapy. It made me feel safe enough to explore emotional territory that felt frightening with her. Warmth is an under-used word when talking about mental health care, but I believe it's an important one.

   
   

   Relating to warmth and connection, I struggle with 'emotional permanence'—probably linked to things that happened a long time ago. I'm trying to improve this, but I still find it hard to remember that people continue to care about me unless I have something to anchor those feelings of care onto (eg: a text message, a photo, an object).

   
   

   Therefore small acts of showing warmth and connection that people close to me do to show me (very obviously) that they care about me means a huge amount to me.**

   
   

3. Acceptance

   I think one of the closest synonyms to love is acceptance. Let me be me. Let me feel all my feelings, in all their intensity. Let me be emotional, excitable, passionate, curious. Don't shame me for emotional intensity. Don't shame me for loving people and things deeply. Don't shame me for wanting authentic relationships with people where I can show myself instead of having to hide.

   
   

   If you feel able, then build mutual trust with me so I feel safe enough to pull off my mask. It's painful to wear a mask that says 'I don't feel much, this doesn't hurt, I don't need others'. What's more painful than that though? Building trust with someone and then pulling off my mask only to be told to put it back on.

   
   

   The shame of that feels almost unbearable. Show yourself to me, but not too much. Show yourself to me, but not that part. These moments have probably been one of my biggest (the biggest?) catalysts for a crisis in the past.

   
   

   These moments, at times, made it feel too painful to go on living. I am so glad I made it through these times. And I'm here with this life that I love. Yes, it's painful sometimes. I won't tell you it's always easy. But it's fleeting pain, not an agonising backdrop to my entire existence.

   
   

4. Choices and options

   People with a BPD diagnosis should not be the treated as lesser than people with other diagnoses. We should be offered support and care too. I can't believe I'm having to write this, but I am. And if you have this diagnosis, you will likely know what I mean.

   
   

   We should be able to choose what our care looks like and say what works or doesn't work for us. I loved DBT and it changed (saved?) my life. But it's not right for everyone. There should be choice and flexibility for individual need and preference, especially as there is a such diversity amongst people who are given this diagnosis. I also believe people's opinions on their diagnosis should be listened to. It's a controversial diagnosis for good reason.

What would you add or change to this list? I would love to hear your ideas and thoughts.

Rosie x

*Although I know that lots of people with this diagnosis take medication and if anyone finds this helpful, I am so pleased. I have taken various medications in the past, but I've been without them for about 6 years now. I never really got on that well with medication. I always had a question mark about whether it was doing anything at all for me. It has always about the psychotherapy and social support for me really. If it helps others though, I'm very much in favour. Whatever helps! For me it's all about DBT, positive relationships, a well-balanced routine with a manageable level of stress with enough time to be alone and do creative things, as well as (vitally) being able to be myself without having to hide who I really am.

** I screenshot lots of messages to read back. I have photo albums on my phone. I have printed photos. If someone gives me a gift, I look at it to remind me that a specific moment happened. It's not a perfect way of managing my challenges with 'emotional permanence', but it helps somewhat. I look at gifts that friends give me as reminders that our friendship is real. I reckon this might sound strange to people who don't feel like me, but I also think lots of you reading this will relate!