Yikes. I’ve had a bit of a shitty night. Woke up from a dream where I was sobbing - proper distressed, inconsolable body sobs - about work. I was living in a tiny cramped flat with my deceased family members, with no room. People from work were coming in and out & I felt >
> ashamed and I was trying to say that I used to live on my own in a bigger flat and not share a bedroom with my siblings & live with my Mum but I couldn’t. There was a new manager who came to see me and somehow bizarrely ended up in my bedroom waiting for me and it felt >
> intrusive & shaming because she saw my poor living conditions and I knew she would have been told by management that I was unstable/troublemaker/no good/rubbish. So then I cried and cried and cried and cried (to show how stable I was 🤣) and then I woke up 😳😳😳 >
> also random ppl I work with, coming in and out of my home, making snide remarks about no wanting to be there. All the time I felt embarrassed because it was small, cramped, dark, full of people. Ugh. Woke up mid cry and felt awful. That wasn’t quite it though... before that >
> I’d woken up just before 7am, wide awake, with vivid thoughts. The thought was of my (now deceased) brother. I remembered a time around my Mums funeral when I went to pick him up and he was slurring, all over the place, couldn’t stand up. So I took him to the Doctor. >
> I said to the Dr that he was really ill and I was really worried about him, his mental health was really bad. The Dr looked at me like I was mad and more or less asked why on Earth I had brought a paralytic drunk person in for a Drs appointment. It was only then that I smelt >
> the alcohol on him, and I felt really ashamed and stupid that I hadn’t realised that he was ‘just’ drunk. It’s actually a true story, but I knew I must have been getting mixed up as it couldn’t have happened while I was on my way to my Mum’s funeral. So I tried to remember >
> the funeral. I tried to remember my brother being there. What shocked me is that I couldn’t remember. I couldn’t remember whether she was cremated or not. Whether the talk was at the crematorium or in a hall. It shocked me that I couldn’t remember my Mum’s funeral. >
> all I could remember was getting my car washed on the way to the crematorium and there being a stand off at the car wash because someone pushed in. I wasn’t to be pushed around, esp that day, so I got my poor 12y old brother to stand in the way of the car wash while I backed >
> my little car in like a crazy woman. I felt really embarrassed at the memory, realising how mad/crazy I must have looked and my poor brother having had his Mum die doing car wash showdown on the day of her funeral. Grief does crazy things to already crazy people >
> Then I remember feeling ashamed because I was almost late for the crematorium bit of Mum’s funeral because of carwashgate. But hey, I got there in the nick of time and at least the car was clean & shiny. At this point in the memory, I was trying to remember where my brother >
> was. Where was he? I couldn’t see him at the funeral, at the crematorium. I couldn’t remember the crematorium talk either. It was really scary, because I couldn’t understand why I had no memory of the actual talk bit. I realised I must have been pretty traumatised to have >
> blocked out the memory. It didn’t make sense that there was only a crematorium bit. My religion always had a memorial/funeral talk that was in the hall. Where was that memory? Then I realised that the car wash bit was in between the funeral talk in one town and that I had to >
> drive to the crematorium in another town afterwards. It was weird,I couldn’t remember the talk or my brother being there either. Where was he? As I type this I’ve just remembered my Mum’s coffin in the crematorium and a bunch of flowers on it. There were no flowers on the >
> coffin because my Grandma hadn’t wanted any. The religion 8 was in had some weird stuff about death that I now realise really hampered the grieving process and kind of detached you from it. You believed you would see them again. Why be extensively sad about it? Hence the >
> no flowers, my Grandma feeling it was a waste of money, but something deeper than that - why bother? The person wasn’t there to see them. They were dead and couldn’t see, or hear, or feel. Flowers were worldly. I kind of agreed. What was the point? Plus, I didn’t really >
> understand the whole death/funeral thing. I was 21, hadn’t been to many - just my Grandad’s, which was even stranger - no funeral at all. He said he wanted to just be cremated, no family, no funeral, nothing. We had a kind of family get together instead, brought food and it >
> was quite nice. More like any other family get together. He onl6 sa5 on his chair coughing and watching the TV, so it was like nothing had changed. My aunt seemed the only person who was sad and said that she would have preferred a funeral, a cousin said it was a shame we >
> were together for such a sad reason. I felt a bit of a twinge when she said that, a mix of feeling guilty for not feeling as sad too and also wondering why she would bring a downer on the party, because people weren’t being sad. I look back now and think wtf, that was really, >
> really weird. So no wonder I didn’t seem to react like ‘normal’ ppl would at my Mum’s funeral. There was no coffin in the hall where the talk was held. A few minutes on my Mum, where the ‘brother’ forgot to mention my little brother when naming her children - as though she had>
> 3 instead of four. My brother did a huh? What about me sound, and I kind of laughed at his face, it was funny, the guy speaking was old and forgetful. Now I look back, what a strange reaction. How terrible to get that wrong, such a lack of thought or consideration >
> disrespectful. As usual, the customary few minutes on the person, the rest of the talk on religious propaganda. Why not to feel sad. Where was my brother? Then I remembered. I’d gone to pick him up, and he was paralytic, drunk. Could barely walk. Tried to drink his sorrows >
> away. In a way, at least he’d felt something in the first place that needed to be numbed. I’ve remembered bits of the funeral talk as I’ve been typin* this stream of consciousness, but 5his morning, at 7am, vivid memories, I couldn’t, it was blocked out. Then I thought of how >
> the day after sh’d died I’d had to move into her old flat to look after my brother. My bedroom was her old bedroom, where she’d died. My brother had to go back to school to keep a routine almost straight away. I look back and think how, awful, how traumatising, no way of >
>acknowledging that trauma happened, just carrying on as normal. Filling in paperwork for social services to be my brothers legal guardian. No financial help like foster parents, just close monitoring of the disturbed child and the incompetent, inexperienced 21 year old daughter>
>who was thrown into taking care of a tearaway kid who was already under social services, traumatised with behavioural issues, now with a dead Mum & an older sister with no clue or experience to look after a teenager. Just as I was feeling sad about that, I fell asleep, and had >
> the work dream. Or was it a nightmare? Does sobbing uncontrollably count? Dream analysis where you use a mystical formula to say x=y seems bollox to me, but I do think that dreams mean something to the individual. Funny how I’ve equated work with grieving, having genuine >
> feelings of grief and sadness at the loss of something (my health, opportunities, growth, acknowledgement...etc) not being seen as valid, in a world where that doesn’t and shouldn’t exist for me. Me not recognising how bad this was fir a long time. Sobbing and sobbing >
> and being seen a mad, unstable, when the tears could be linked to genuine reasons. My little flat - the lack of privilege, denigration of that? People trampling over that and seeing me as nothing. Accessing intimate areas, like my bedroom, leaving me feel ashamed. As #LXPs we >
> use our bodies to access the experiential lens. It’s a powerful tool when used and can do a lot of good, but it is a mixture of fragile in its strength, it can be destructive when abused, when accessed and denigrated rather than given the respect it deserves >
> In my case, eating me up, sobbing... waking up crying. In a dream. A dream when I should be sleeping, resting, escaping. But there’s no escape. It’s a puzzle to solve and my mind can’t help but keep trying to solve it, because that’s how I’m wired. There must be a way to >
> solve the puzzle, to make it right. To make people see... be treated fairly, cared about, respected. I’m reminded of singer #FionaApple who said that she thought if she bared her soul in her songs, wrote her truth in all of its detail, people would understand. But they didn’t >
> and she realised that people didn’t understand if they had the answers presented under their noses. People see and hear and interpret as is consistent with their existing beliefs. So communicating pain won’t and can’t be heard, unless people open themselves up to it & want to >
> Well, it’s been a blast having a flow of consciousness on Twitter, an example of how I process stuff, make links to existing conscious knowledge, understand things, discover things... part of the process of putting these insights back into work. Lots of things to chew on! 🤯***
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More from @tamar_whyte

19 Dec 20
Is it bad that I feel my blood boil when I see equality drives that completely ignore the inequality that people in the #LivedExperienceProfessions face in the mental health organisations they work in. Imagine being in the intersection of being a Black, non-binary LXP? Your >
> experience of discrimination won’t even be registered. It won’t make the equality drive photos. Mad people, esp those who deign to be open about ourselves & champion Mad knowledge in Mental Health settings are actively held back, treated differently. Even LXPs with White Male >
> privilege are treated worse than their colleagues, paid less, exploited with no career opportunities. So heaven help our openly #Mad #LXP colleagues of colour, who are LGBTQ, with coexisting health conditions. Is it any coincidence that myself and my colleague - both with >
Read 8 tweets
16 Dec 20
COVID is frightening. The deaths, the restrictions, the lack of knowledge and consistency of how to deal with it. Conspiracy theories are a response to fear, I suppose. Thinking about it that way may help to mitigate clashes with ppl who believe them. There is generally a grain >
> of truth in everything. During periods of crisis & uncertainty, there are always people who use this for profit, like the disgusting assigning of contracts to companies who have never produced the PPE they were paid for. They also happen to have links with govt ministers >
> so yes, it makes sense that ppl mistrust the govt and the freedoms being taken away, because the ppl doing it aren’t trustworthy. But that doesn’t automatically mean that the precautions & restrictions to control the virus are wrong or the virus doesn’t exist. >
Read 4 tweets
30 Nov 20
#LXP explanation thread: There is no standardised language in the Survivor movement. When I use the term #LXP it is an acronym for #LivedExperiencePractitioners or #LivedExperienceProfessions. It refers to ALL people who work in posts that require use of insight from >
> lived experience of adverse mental health. So that includes LE Consultants, Survivor Researchers, Peer Support Workers etc, It’s not a universally accepted term, but when I tweet I need to use *something* to refer to us all, so that’s the term I use, because it’s quicker than >
> writing an explanation each time that Twitter doesn’t allow enough characters for, unless it’s a thread which people are less likely to read (ha, that’s a hilarious thing to say in a thread 😂). We all do very different roles but the one thing that binds us is the unique way >
Read 20 tweets
20 Oct 20
I have just finished reading @BPDFFS chapter in the ‘Working effectively with Personality Disorder’ book. It’s a beautifully written first chapter to the book. A complex subject introduced in simple terms, without dumbing it down. /1 > amazon.co.uk/Working-Effect…
> I love that even though @BPDFFS describes the chapter as ‘personal thoughts about personality disorder’ - she provides an example of experiential working at its best - she uses insight from her own lived experience, but positions it within the wider range of views that exist /2
> within the survivor movement, from the anger of people harmed by poor services, activists using satire as a tool for protest, critical views (both negative and positive), people satisfied with the service they receive and those who feel that the label has helped them. What /3 >
Read 8 tweets
10 Oct 20
It’s #WorldMentalHealthDay - a day that #MentalHealth activists love to hate, because hey, it’s not all light at the end of the tunnel (yay Recovery 🙄) & it’s not just one day of the year. But sod it, here’s a pictorial compilation for you. Bonus points if u get to the end 1/25
2/25 Meds. Love them or loathe them, they are a daily reality for many of us. Big Pharma makes a lot off us Mentals. Did you know that my most debilitating diagnosis can’t be medicated? But all the others equate to 13 tablets a day, plus any extras on PRN #WorldMentalHealthDay
3/25 I’ve never, ever, ever been able to maintain taking meds regularly. But I do now. The Hubster wakes me up with a coffee, toast and meds. But having a caring, loving person in my helps me more than any meds. Sadly not available on prescription for us all #WorldMentalHealthDay
Read 26 tweets
21 Jun 20
It’s good that examples of CEOs taking race discrimination seriously beyond just listening to stories into action is happening. I hope that these skills in tackling inequality will be used in tackling discrimination that #LXPs face too >
> As a mixed race, pan, disabled woman, none of the #NHS staff networks provide the support I need because where I face the most intense discrimination & inequality is openly using insight from a mental health condition in my work. It’s not an area any adequately understand /2 >
> Because they don’t understand how this extra layer of discrimination impacts on their #LXP members, because it’s so invisible, we can’t get the support we so desperately need within them. I notice that my #LXP colleagues who aren’t white, are LGBTQ, physically/neurodiverse /3 >
Read 22 tweets

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