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  • Writer's pictureTamar

Part 3: Maybe it’s not the Hypomania?

The wreckage of the candle and the smoke filled beer glass.

So yes... Parts 1 & 2 detail impacts of Hypomania. But why pathologise this? Maybe Hypomania is a perfectly normal response to an insane environment.

Longer backstory: 2019 was to be the year my resolution was to finally change something to address the systemic discrimination faced by Lived Experience Practitioners. It had to be possible - nobody consciously wanted this, did they? Surely an awareness campaign would be the first crack in the concrete ceiling.

I’d been mercilessly going at it, linking with campaigners & influencers, academics, decision makers, even been to parliament with a group of fellow warriors in this cause. I’ve been to every board meeting this year and asked a public question. This has ensured that what wasn’t being heard informally or was blocked by internal systems still found a way into official documentation, had to be acknowledged and responded to. I’d been brutal in the quest to keep my mind in terms of my mental health too. I live with a cocktail of issues, like most people with long term life impacting mental health conditions. I knew I was in danger of relapse so I used every inch within my power and support network to not let that happen. On the sly I didn’t win every personal battle, but no major hospital stays or relapse.

The breaking was physical. It started with simple tooth grinding. Bruxism. Since January, when it became evident, it’s escalated so much that I’ve gradually damaged many of my teeth and broken all existing fillings. My wisdom teeth need removing. It’s complex so the original surgery wasn’t successful and needs to be done at a specialist hospital. Anxiety is a common cause of bruxism.

Think about that for a while: Whilst I was mentally baring my teeth, my soul was crying out and because I wouldn’t let it do so mentally, it did it physically. It broke those literal teeth. It wanted me toothless. It couldn’t bear the intense pressure of fighting for equality.

A few months ago I was taken by ambulance to A&E with excruciating stomach pain. It was so bad I needed that ambulance with gas and air because I couldn’t be a passenger in a car, the pain meant sitting, standing, moving, being still - all was unbearable, so I moved between each to try and alleviate the pain. I couldn’t sit in a car while my hubby drove. I needed the pain relief and the human relief provided by someone being with me through the journey. The phantom stomach pains were a mystery as test results didn’t show anything and they disappeared as suddenly as they appeared. I knew what it was. It was anxiety. I wouldn’t let it steal my mind. So it took my stomach. The stomach is regarded as being complex and some of the functioning similar to a secondary brain. There is a lot we don’t understand about it. Some cultures view the stomach as being linked to power, and people who have stomach issues may be physically experiencing issues linked to their power being taken or abused. It is linked to people who have experienced trauma or abuse.

Think about that for a while. I was fighting power in terms of inequality embedded in a system. My soul cried out to stop and because I wouldn’t let it do so mentally or emotionally, it did so physically. It broke my physical seat of power - my stomach. It wanted me powerless. It couldn’t bear the intense pressure of fighting for equality.

Fast forward to now. On my birthday the gift from my body was a seizure. I had been 26 years seizure free. My epilepsy was controlled for all that time. A week of sleepless nights was the perfect storm for the storm in my mind. The sleepless nights were caused by a quandary over whether to formally pursue something that at worst was a case of plagiarism and at best was evidence of career blocking actively associated with me working from an experiential lens. I’d gathered the evidence, presented it informally. Nothing was happening in terms of addressing it. I knew I would have to use formal channels to address it but I knew that this could potentially break me in terms of the extra emotional energy and needing to use a mental capacity that I’ve been gifted with to it’s fullest capacity. If I went down that path I would potentially need to present on a level to challenge experts in HR, experts in academia, experts in law, experts in systems. It may mean I would have to take it as far as gaining support from human rights organisations to address the systemic discrimination against mental health in the workplace. It could be a good thing if it ended up a test case and ensuring that all people going through the same thing were protected too, if legislation was clarified and awareness and understanding of these issues became part of the public consciousness. The superhuman brainpower, the drawing on support links and external resources to do this would be immense. But nature had gifted me the combination of a sharp brain and the ability to make connections with people and organisations that together could change discrimination that hurt people like me. I’d been gifted with training in several disciplines that would help me to challenge this inequality. Wasn’t it my responsibility to use those gifts rather than walk away? What about all the people who weren’t given that magic combination? How dare I walk away if could make a difference that helped other people? People like my friends who have relapsed because of these systemic inequalities, self harmed, attempted suicide, been hospitalised, lost their homes. If I had power because of my mind and my networks, wasn’t I obligated to use that to help?

Think about that for a while. I was using my mind and connections to fight inequality embedded in a system. My soul cried out to stop and because I wouldn’t let it do so mentally or emotionally, it did so physically. It broke my the physical source of those abilities - my brain. It wanted me unable to access them. It couldn’t bear the intense pressure of fighting for equality.

The seizure meant I lost my driving license, a huge support to me. I’ve only had one seizure before, at 16 when I stayed up all night to do my GCSE coursework. I bit my tongue and it hurt like a bitch for weeks, two black stripes where my teeth had clamped for the duration. My family didn’t panic. Mum had been having seizures since she was 5. My brother since he was 7. I got up and got on with my life, I don’t remember any long term impacts afterwards. Just a referall to epilepsy clinic, a few myoclonic jerks, meds I didn’t remember to take half the time. No biggie.

This seizure has been different. I’ve experienced short term memory loss to the extent that I often forget what I’m doing in the middle of doing it. My concentration is that of a gnat. Appointments get scheduled in separate areas in my mind and don’t connect, so that I can know I am doing several things in a day but only be aware of them on separate timelines, not connecting them. This will make no sense to most people and may not be something that can be explained. But it’s like shattering the ability to hold time and space together and connect things up. Some days I’m fine and think there’s nothing wrong. I do all sorts on those days. The next day I’m in bed for the day, recovering.

The most painful thing has been losing my ability to think and do the clever stuff. When you are a person whose ‘dis’ - ability makes it so that really basic stuff like nourishing & feeding the self, organising the self, maintaining relationships with others, so difficult on a daily basis, it’s a constant reminder of being inadequate. Particularly when it’s not a physical issue. Particularly when after four decades you’ve mastered the mask and tricks that ensure you pass as being a functional human being. So losing the one gift I have - the brain and the thinking - I’m left with the ‘dis’, all the things I’m bad at, that leave me vulnerable. My superpower can’t save me. I’m scared.

I’ve been told this is temporary. I’ve been told it should heal within about three months. I’ve been told that the meds I have will be around 6 weeks to build up to the minimum therapeutic dose. Then it will be another 6 weeks to ensure they are working and don’t need adjustment. So that’s the three months, I guess. I’ve also been told that I was lucky it wasn’t a stroke. That scared me. I should have taken the seizure more seriously. My Mum and brother eventually died during seizures, their brains finally worn out. My epilepsy isn’t that bad, but then for 26 years it hasn’t been visible. Death and disability can result from strokes and seizures. Is it worth risking that? Metaphorically banging my head on a brick wall until it is bloody and damaged. My soul interpreting that in a physical sense, bringing me seizures and injuries to match the mental and emotional ones.

I thought this wake up call may be echoed in my work environment. I’ve been told to sack it off before it leaves me carried off in a sack. Been told that the system doesn’t care. Been told it will suck me dry and move onto it’s next course of bright, shiny, happy, wide eyed people with no understanding of systemic issue, who will be replaced as they reach awareness and are deemed a threat to the status quo. The problem is that as I’ve got to know the individuals within the system, this doesn’t ring true. Most people appear really decent and to really care. Even the ones that I get pissed off at I honestly think have good intentions. I honestly believe that by working together the decision makers can become true allies. Then the system will change.

My phantasies and fantasies of Utopia were shattered last night when I noticed that for a second time, in my absence, the policies and procedures I’ve been trying to influence to make things better and stop me and my colleagues ending up hospitalised are continuing to be developed. Crucially, this is being done without the input of actual Lived Experience Practitioners who have the understanding of working within systems and experiencing the stigma and inequalities of LXPs AND the training to be able to understand and identify the systemic issues causing the inequalities AND the support and ability to be able to raise these issues and challenge them within environments that are hostile.

You can’t expect a volunteer, or a poorly paid and trained peer support worker to do that. It is a consultants job and needs the appropriate support, supervision and training to do that. It needs the respect of colleagues and authority to hold others to account and also to be held account for decisions that are made. I can cover the first and second areas, because of training and support I’ve accessed externally. But I can’t effectively use those internally without the system seeing, treating, valuing and paying me as an equal. Otherwise I’m positioned to speak the painful truth but not positioned to change it, left to the whim of decision makers. My perception is that these decision makers want change on a conscious and verbal level but subconsciously are so scared of the unknown and perceived threat this involves that it is constantly sabotaged.

I say my phantasies and fantasies of Utopia were shattered because this wasn’t a case of work I’d been involved in carrying on in my absence. This was a case of work that I’d been kept from developing and had remained excluded from despite raising the issues of discrimination and risks to LXPs by highlighting my hospitalised colleagues. When I was finally rushed to A&E and away sick from the stress of it all, what a perfect opportunity to present harmful policies without the need to hear the objections to pain they will cause. What a perfect opportunity to not have to address or think about the painful exploitation and inequality they reinforce. I have asked for either the employment of an LXP consultant who would be trained, qualified and skilled in this area to take on this role in my absence.

At the moment, this knowledge gap will cause a lot of people pain and distress in the future. Including me, when I finally heal to return to work, risking my health again in the environment that caused the issues in the first place.

What hurts most, is this process includes people I trust and considered allies. It includes people who understand this. I can’t understand how they could authorise or allow this to continue.

How do I hold any element of this system accountable for its actions? The systems formal procedures include naming an individual on complaints or grievances. But how do you address the heart of the issue when it is systemic, and individuals are simply pawns responding to the position they are placed in? You name and shame and blame, the scapegoat carries off the bad stuff as it is ejected, whilst the underlying causes remain. The system could do that to me. Why would I want to inflict or mirror that back that on someone else?

What the fuck do I do?

That was the long, convoluted story. It’s the sanitised version, that hopefully conveys the themes and issues without blaming or shaming individuals, because at the core nobody is ‘the bad guy’ or the ‘good guy’. We are all elements responding to one system, doing what we think is right. At least I hope so as I don’t like thinking anyone would consciously cause harm to others. I like to think that the various positions have blind spots which shield a persons view and capacity to see or understand the view and capacity of another person. That’s ok, but it’s not ok to ignore someone when they point out a danger you can’t see.

Now I’ve written so much, I’m exhausted. It’s like a purge of toxins. I need to sleep. But I’m hoping it helps more than just keeping me sane. I’m hoping that these themes can be read by any other person who works from an experiential lens who is struggling with this stuff too. I hope it helps others realise it’s not them, these things happen everywhere. Because our work is so isolated, we feel alone and marked as the problem. But they are honestly systemic issues, and if you are reading this, hopefully you can see this and it will help you get past the worst periods.

I’m also hoping that people working from other disciplines can understand the stigma and discrimination we face, which is invisible to most because it is currently accepted as the status quo. Once upon a time slavery was deemed ok. At one time it was legal for men to beat their wives with sticks ‘no larger than 3/4”’. At one time child labour was ok. It was only in the last few decades that it was legally recognised that a man could rape his wife. When I was a kid physical punishment was seen as ok by most, so hid physical abuse of children, including me. Things that make sense to us now weren’t seen as issues historically.

I honestly think that one day, we will look back with incredulity that we ever thought it was ok to employ Lived Experience Practitioners and value them less than their colleagues. We will be appalled at the demeaning pay, the lack of training and supervision. We will hang our heads in shame that we only gave people working from experiential lenses low paid jobs and told them there was no room for progression whilst appointing layers of managers above them who received no training in this way of working or had experience of working from an experiential lens within an NHS system.

I think I’ve finished this particular stream of consciousness. I’ve just put out the fire that started while I was writing this. One of the candles caught fire & shattered its glass container. I tried to blow it out then realised that was stupidity 101... I needed to smother it instead. I wasn’t confident to try that with material so found a giant Oktoberfest stylee beer glass which contained the fire and put it out. It was kinda my fault because I had improvised the candle after it had finished with leftover wax and using several matches for a wick. What a knob.

I suppose I’m starting fires, and being smothered. But that’s because I’m not being held in an appropriate container for my purpose. I hope that once the fire is put out, someone will see fit to purchase a suitable candle for the job, and stop being cheap and thinking they can DIY it themselves. It’s really not worth burning the house down when you can buy some really lush smelling ones for £4 in Aldi.

Thank fuck the shitty candle was on a metal, fireproof surface, right? For my fireproof foundation I thank Emergence CIC, the Lived Experience Practitioner led organisation I cut my teeth with, the KUF MSc that gave me the confidence, theory and underpinning knowledge I needed, and Pioneer LXP for the excellent supervision that has kept me afloat for the last year. Each of these was either led by or co-designed by LXPs. I think there is a lesson to be learnt in that.

I hope to all the goddesses that I get a new metaphorical candle next year. 2020 will be the year to burn bright, promote a calm and relaxing atmosphere in a safe, heatproof container... without burning the house down.

All is peaceful again. Don’t fuck with fire, people. Buy the right tools for the job.

All is peaceful again. Don’t fuck with fire, people. Buy the right tools for the job.
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