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 But that has been replaced by sadness that people would actively use my disability - which I am open about for work purposes - to gaslight me in this way.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 >
4. double check every time someone tells me my perception is out. It means grounding myself and a bit of work that ppl who don’t have this label don’t have to do. If you tell me it enough I think I’ve become ill. It’s a really malicious, insidious thing to do and a way to hit a >
5. persons weakest points. It’s an unspeakably awful thing to do. I risk this every day as an #LXP, and sadly it’s been exploited. Although I’ve had the good fortune to have found out I was being lied to, most people would never know, they would begin to believe that they were >
6. ‘Unwell’. Today I finally was able to ask why. I didn’t really get an all purpose why, but at least it wasn’t me being told I was mad or imagining it. How many other #LXPs end up going through this without realising it’s not them who are ‘ill’? >
7. I wish I could tell you that I felt better for finding out I’d finally got a piece of solid evidence of this happening. The reality is that although I’m relieved I’m also so sad. Imagine finding out people you thought had your back, who cared about you, had been the people >
8. doing the gaslighting, holding the status quo, the power imbalances? The people you thought were your allies were the ones who were unpicking the work of SU activists and people working in the lived experience professions? I feel like a complete idiot, naive, so many >
9. feelings that relate to inability to make meaningful working relationships, like the ones colleagues around me seem to have. People treat you differently, you have to respond differently. You can’t connect. This is what it’s like being an LXP in environments like this. >
10. If you’ve read this far, you can make a difference. Be a real Ally. Stand up for us, if you see gaslighting, don’t sit and watch. Help us recalibrate afterwards and know we aren’t going mad, to reground ourself. Push for equality and posts for us. Be a real friend. Care. ❤️
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 >
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 >
1. This is the reality of the toll that mental health activism takes on campaigners. Campaigns often have to be done at the last minute, where issues are only discovered after the publication of an evaluation, shortly before a deadline to public responses, or to stop a roll out >
2. What people don’t see under all the protest is the toll the protest takes. Bethan’s presence on Twitter is a strong, formidable force - an intimidating wealth of knowledge that busts a hole in the shitshows that pass for involvement. People don’t see the the toll that >
3. level of head over the parapet takes. In addition to the mental gymnastics of reading and interpreting complex shit, breaking it down to its basics and then reapplying principles to it to working out the gaps and building up a robust counter argument, there is the emotional >
1. The stress that ‘co-production’ takes when power is unequal is highly distressing for the party with lesser power in the partnership, particularly over long periods of time where the power imbalance is sustained and there is no action to remedy this. When power is abused by >
2. ensuring that decisions about LX practice or services can never be made by the Lived Experience Professional in the room, that you take those decisions outside of the room, this causes distress and harm. The harm caused by the abuse is used an example of why #LXPs are >
3. described as ‘vulnerable’, or prone to going off sick. Let’s just be very plain speaking about this - LXPs aren’t vulnerable. They are warriors who have been through wars. What they are is people who already have battle wounds, coming into workplaces that will particularly >
#EpilepsyTwitter, I have a question for you! Does anyone ever experience a feeling like an electrical pulse, or what can feel like an electrical jolt, but that isn’t accompanied by a jerk? Not a myoclonic jerk you would normally associate with #epilepsy, but a similar feeling >
> without the jerk itself, and no micro loss of consciousness. I usually feel it in my forearms or legs, but sometimes in my lower back. I described it to the nurse who runs the #epilepsy clinic, she hadn’t heard of it before. I think she is wondering if it it not epileptic, >
> but more anxiety based. As I’ve been writing this Tweet I’ve had a small one in the top of my arm and in the side of my back. Sometimes it can be accompanied by feeling sleepy. No loss of consciousness though. If I had to describe what I thought it was, it feels like >
1. Has anyone else had problems with @IrregularChoice jewellery? I ❤️ the designs so much, but when my #Kittynaut necklace arrived the clasp came off as soon as I took it out the box! I was annoyed because it was so f* expensive for costume jewellery but thought sod it I’ll just>
2. put it back on myself. Then I wore it once and it came apart, but I loved it & there were no more and so I botched it together, wore it once more & it totally fell apart 🤬 Then I fell for the #IrregularChoice Smile necklace in the sale, second time I wore it, it fell apart >
3. Again, #IrregularChoice jewellery is damn expensive even in the sale so I thought I’d better complain this time but having had such bad health recently with low mood just couldn’t face it... crazily to cheer myself up I very stupidly ordered their Pink Poodle earrings. Yes, >