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 >
4. @Greenpeace seem to have managed to do it by having a charity and non-charity side so that they can carry on with their activism. It’s a shame that @MindCharity hasn’t taken the same approach. I wonder if it could look to organisations like @amnesty and Greenpeace to rethink >
5. their approach? Atm a hell of a lot of resource goes to big #MentalHealth charities that doesn’t make it to grassroots survivor/service user led groups, the ones who really are working to make change happen, save lives. Tiny but mighty: @StopSIMMH @RITB_ @MadCovid >
6. so if you are feeling generous & want to donate to a mental health cause, consider a service user led group. If you are a SU led group or organisation, think twice about the charity status and how you structure your organisation. Be smart, like Greenpeace #VivaLaLXPRevolution
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More from @tamar_whyte

27 Sep
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>
Read 14 tweets
13 Jul
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. >
Read 21 tweets
20 Jun
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 >
Read 24 tweets
10 Jun
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 >
Read 11 tweets
26 May
1. I am so, so proud of my fellow Mad activists/allies & supporters who came to a board meeting to support a collective of us raising concerns about #LXP working during public questions. There were ten of us altogether. We had come together in the space of a week, identified >
2. shared concerns about career blocking, exploitation, deliberate exclusion of LXP staff. We gave the recent secretly turned away funding for an #LXP senior post as an example. We had three people scheduled to ask questions, but - and u couldn’t make this shit up... >
3. The third presenter, who was due to ask questions on staff wellbeing wasn’t able to due to being hospitalised over the weekend with a suspected stroke. Being mad is stressful, unfortunately. Instead, two of us covered their section. We left feeling good that the questions we >
Read 15 tweets
18 May
1. What people refer to as ‘personality disorder’ in terms of ‘emotional dysregulation’ is interesting. Rather than dysregulation, I’ve noticed a lot of people appear to have a highly sensitive, finely tuned reception to other people’s emotional communication. Not everyone of >
2. course, that would be a massive generalisation. But a lot of people can sense or have intuition of when something feels wrong, or a persons mood is good or bad. Much is likely to have come from early childhood experiences where this skill kept some people safe. It’s less of >
3. a mystical power, more of a supernatural skill that has been developed. But it doesn’t mean that the emotional communication your highly sensitive instrument can be read or interpreted accurately. The emotional data given by the other person when learning the skills as a >
Read 11 tweets

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