1. Back when I was diagnosed with EUPD in 2005 I did the usual Google thing & found @Quora. I’ve never bothered unsubscribing & I keep getting email bulletins with Q&As from people who detest ‘toxic Borderlines’ and are rampant Royalists. Yet I STILL haven’t unsubscribed >
2. It winds the everlasting f* out of me, I get torn between responding to the worst of the bile & misinformation posted (bad idea: too much energy), to unsubscribe (good idea💡) or to observe occasionally (brave: a step outside my personal social media echo chamber) >
3. It’s also a reminder that even for most of the differences of opinions on Personality Disorder/‘Personality Disorder’/Trauma & it’s treatments, most of the people (clinicians/non-clinicians) taking part in these conversations care enough to do so, whether we agree or disagree>
4. with each other’s beliefs on diagnosis, method of treatment, there seems to be an underlying belief that people are fighting for what is ‘best’ for SUs within their own minds (even if it is re-traumatising/unequal power-level etc). >
5. It’s only when you step outside these conversations and into ones where people with attitudes from the most stigmatised & hate end of the spectrum attitudes (clinicians & non-clinicians) gather that you get that reminder. Most of those people who have really hurt us (SUs) >
6. in services or workplaces aren’t here, they aren’t engaged in these conversations. They don’t care. Do they look? Maybe. But the cognitive dissonance will make it hard, just like me seeing someone talking about ‘the toxic borderline’ makes me feel like I want to be sick. >
7. Somehow seeing the most extreme discrimination and hate speech (some of this is indeed hate speech towards people with a diagnosis) outside of a training room where it can be contained is too much, esp outside working hours. Just wondering what anyone else who has ventured >
8. into such spaces thinks? Aside from despairing at humanity… did it make you wonder about conversations here, how little they are explored or known outside our Twitter algorithm, how the worst discrimination, abuse & hate speech can be addressed?
1.Lots of feelings today. I’m in the middle of trying to officially get discrimination and inequality recognised. It’s really hard. I’m so fucking tired and sad. I want to fast forward to an open court where I get to say what’s happened and it’s done & over whether I win or not >
2. I’d have been happy with a systems change that would have addressed inequality. Most people can’t cope with how awful this process is and you never hear about other Lived Experience Professionals (Researchers, Peer Workers etc) who have raised grievances because >
3. organisations often give a settlement payment to keep it from going to tribunal. I don’t think anyone could offer me a big enough sum to do that. It would need to be so big they’d never, ever do that again to anybody because they couldn’t afford to. >
1. MENTAL HEALTH CHARITIES: A thread. The frustrating thing about charities & govt funded orgs is they are gagged to remain neutral. The causes, triggers & worst stressors of mental health issues are social, environmental, political. Roof over head, disability benefit, etc >
2. Yet charities can’t comment. So all the resource and funding goes to orgs who structurally are prevented from helping where it is needed most - they can try to soothe the trauma a bit but not get anywhere near stopping it. This means that the only way to really do that is by >
3. not being a charity, because if that’s what you are, you become pretty useless when govt policies lead to thousands of deaths of people with mental health conditions and you want to organise a special day or coffee morning to chat about mental health. Some organisations like >
1.Why do clinicians not tell you about what your #epilepsy symptoms are? Just woke up from a reset sleep but it’s led to morbid curiosity Googling. Those weird head sensations I get are called ichtal headaches. There are 3 types: pre, post & ones without seizures. I reckon I get>
2/ all 3, but I’ve never heard of them before, even though I’ve definitely described them to my #epilepsy consultant. I’ve felt like a bit of a knob, trying to describe the odd sensation that I call an ‘epilepsy head’ and how I can tell it’s different to ‘normal’ or a headache. >
3/When I get asked how I can tell I always feel like I’m coming across as a hypochondriac exaggerating a symptom. There it is, in black & white, on Google, so it must be true (tbf, the sources I was reading were peer reviewed articles😜) Seriously, why don’t medics tell patients>
1.There is something so heartening about seeing a Tweet that acknowledges that the issues #LXPs have are real & they do have an impact. Because discrimination usually isn’t acknowledged #LXPs never get to hear the words “I’m Sorry” as a genuine apology as opposed to being in the>
2. context of ‘your perception’ being skewed or ‘your feelings’ being hurt, which is like a backhanded way of being told that the way you are being treated is caused by you & not the people doing it to you. It places fault back with you, rather than being the responsibility >
3. of people accountable within organisations to change discriminatory behaviours. It lets people who lead organisations off the hook if there’s no acknowledgement an issue exists, because then there are no national campaigns to appease, no pesky equalities targets to reach. >
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 >
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 >
1. I’ve had years of knowing stuff isn’t right and being gaslighted into it just being my ‘perception’ or pathology. It’s a pretty cruel thing to do when talking to someone diagnosed with a label that likes to include an ‘unstable sense of self’, ‘paranoid ideation’ & >
2. ‘severe dissociative symptoms’ as part of its diagnostic criterion bullshittery. After finally catching wind that actual evidence existed that I had been excluded, lied to, had things hidden from me, I felt so relieved and happy to finally have something solid to show that >
3. although I’m a loud proud member of the Mad movement, I’m not losing the mind I’ve worked so hard to keep. But that has been replaced by sadness that people would actively use my disability - which I am open about for work purposes - to gaslight me in this way. I have to >