1. The #BPD label & diagnosis: a thread. At this years #BIGSPD21 Ian & @JaneCannonMBE gave a presentation describing the experience of losing both of their teenage twin daughters to suicide. She & her husband have campaigned for young people to be able to be diagnosed with #BPD >
https://twitter.com/janecannonmbe/status/1405833006628184064
2. to be able to access appropriate services. Their daughters Chris & Sam were constantly being told that because their problem was not an ‘illness’ that could be medicated, they could not access any treatment. Both had all of the main symptoms that fit a #BPD diagnosis & >
3. struggled to manage the emotional turmoil they felt with self harm & suicide attempts. The interesting thing is they both wanted the diagnosis in order to be able to access services. They both rejected the idea of services for trauma and instead wanted ones that were for >
4. #PersonalityDisorder. When a therapist brought up the subject of sexual abuse #CSA, @JaneCannonMBE described how one of her daughters disengaged from therapy for 18m. They both heard about the stigma & campaigning to get rid of the label & found it confusing, as they wanted >
5. a label to know what was wrong with them & neither of the twins were able to access the services they needed. #PersonalityDisorder & #BPD diagnosis aren’t given until people are adults 18+. Sam died at 16, Chris at 17. It was interesting to see how their experience mellowed >
6. the rage & arguments of ppl from each ‘side’ of the debate who were at #BIGSPD21. Messages of support were posted from ppl who are ardent activists for getting rid of the label & diagnosis of #PersonalityDisorder. The experience reminded me of when I found out about my #BPD >
7. diagnosis. It was a lightbulb moment. I knew something felt very wrong, but with #MentalHealth staff constantly telling me I wasn’t psychotic or depressed I thought they didn’t believe me, or thought I was a hypochondriac. The diagnosis was such a relief - I had a real life >
8. diagnosis & a textbook said so. The symptoms fit - all 9 of them. I was able to find groups online with other people who had #BPD. They were just like me: young, creative, weird, artsy, struggling with inner turmoil, self harm and suicidal thoughts. I had found my people. >
9. We kind of wore the diagnosis like a badge. We supported each other. Sometimes we swapped self harm images. It wasn’t all a bed of recovery roses. This is what happens when you go to the GP for a repeat prescription, ask what diagnosis they gave you while you were in hospital>
10. and come home having to Google it because he checks your notes and just says ‘Oh yes. #EmotionallyUnstablePersonalityDisorder’ #EUPD - without telling what the hell that even means. The point I’m making is that at the time, a diagnosis - something tangible & real that made >
11. my experience feel valid was what I wanted. I knew that I had a massive history of trauma going on, but so did the rest of my family & they weren’t like me. I wanted something to show I wasn’t just being weak, because I knew I was strong & that the pain I was experiencing >
12. was very real. It’s taken years of experience, training in #MentalHealth, understanding of the stigma that exists amongst Mental Health staff (the biggest issue) & being part of the #MadMovement (the most enlightening) to understand the pervasive issues with the diagnosis & >
13. the label. The problem though, is that for most service users, they will never become part of the #MadMovement, or even know it exists. It took me a good while to find it. I’ve noticed that many service users, even the ones who become peer workers are often in the rigid >
14. mindset of the institutions they rely on for services, volunteer work or wages. The understanding of the issues with mental health diagnoses is a journey that includes change as knowledge changes & people become more informed, even if the change is to argue more robustly for>
15. the diagnosis to stay. When I heard this talk it made me think again. I’ve always said that I feel that stigma and the way people are treated is the biggest issue, because whatever we call it, staff will respond to the presentation or just see it as a new label and we will >
16. continue to be treated like rubbish. Working behind the scenes, training staff to work with ppl with #PersonalityDisorder, I can assure you this will be the case. Multiple suicide attempts and self harm, screaming frustration at staff or emergency calls at 5pm on a Friday >
17. will still be viewed with disdain even if you call it early developmental trauma, CPTSD etc. I totally agree that there are massive issues with diagnosis and labelling which need changing. However I really believe this will only be a fraction of the work of killing stigma >
18. that surrounds #PersonalityDisorder. The trauma approach is also problematic in terms of choosing treatment, it only appeals to people who identify with having experienced trauma. That’s fine for me & many others - esp people diagnosed with BPD, but for some ppl, they do not>
19. Feel that any trauma or abuse happened in their childhood. Some models for ‘personality disorder’ such as Schema use the idea of certain early developmental needs not being met, which could include post natal depression where a Mum struggles to bond with her baby, or a child>
20. who is given everything, with no boundaries. There are also models that are based on relationships. Both of these models include trauma, but don’t exclude other options. The main thing is to ensure that everyone has an opportunity to access the services they need, without a >
21. label getting in the way. Service users need to be able to access services they feel comfortable with and that best help them, wherever they are in their journey. I often think of the work of activists like the activist for civil rights, gay rights. Most people in >
22. marginalised communities don’t get involved in activism. However, when activists fight & win rights, it benefits everyone within those communities. The work of people fighting to overhaul the system (ie. diagnosis) is invaluable. The voices of people within the system are >
23. also vital in knowing what scaffolding needs to be in place to ensure their needs are met & that they have the choice they want and need too. There is also a real need for psycho education & links into local SU/carer groups as options available for them. RIP Chris & Sam 💔❤️ 
@threadreaderapp please unroll ☺️🥰
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