“If there are good things that come out of the loss from COVID-19, I hope that it will include being kinder towards people who experience discrimination and vulnerability.”

Tamar’s #MadCovidDiaries 13.12.2020

Entry 1 – Introduction

Hi, I’m Tamar. I’ve been wanting to be part of the Mad Covid Diaries since I first saw the project, I even wrote a bit of stuff! Obviously, I did sod all with it. I thought it all needed to be perfect, finished.

So, I didn’t submit anything, although I had some bits that I’d collated. I thought that rather than the stuff itself, maybe the interesting thing about my diary is that it could document the raw, unfinished, unedited, alongside whatever polished gems may happen to show up.  Because that’s our life, isn’t it? Many of us struggle to complete and finish stuff.  It’s also documenting a life under Covid – coping with the madness that is life, added to the madness that is covid.  Or is that the sanity that covid brings, where fellow humans are tasting the madness we’ve experienced for so long?  It was that thought that inspired my first diary entry, back when lockdown first hit…

Entry 2: Lockdown Musings

Lockdown hasn’t affected the ‘Mad’ community as one homogenous lump. We’re all different. I’ve found hearing other people’s experiences has helped me work out my own.

Several years ago I had a Gastric Bypass. As I recovered and went from liquid to mashed food to solids, experience horrendous stomach pain from trapped wind, it took seeing a baby feeding from a bottle for something to hit me. My stomach was back to baby stages. It was relearning how to eat & digest. When I was a baby, people in the neighbouring blocks of flats could hear me screaming from colic pain. I don’t remember it, but I’m guessing it was pretty traumatising at the time. Plus whatever else was going on in a stressed out sleep deprived dysfunctional family with two first time parents. In some forms of Eastern medicine, the stomach is seen as the area that relates to power, and stomach issues can relate to abuses of power, or having power taken away. Seeing that baby, I made a connection – my tummy was back in baby stages, relearning how to eat. But this time I was an adult, I could understand what was happening, I wasn’t living in a difficult home situation, I had support. I honestly think that re-living and making new memories to challenge whatever I’d unconsciously made my frame of reference back then was a healing process I would never have been able to do without that stomach operation. It certainly changed something, unblocked something, which was more precious than losing and keeping off a shed ton of life limiting weight.

What has this got to do with Lockdown and COVID-19? For me, everything. For most of my childhood, up to the age of 14, I lived in a home that could be dangerous. I have a recurring dream that I lose my home and have to go back to my childhood home. The thought of being locked down with the danger leaves me feeling sick. I noticed that…

***Unfinished***

Entry 3: Reflective Rant

A lot of people have been saying that life as a person with a chronic mental health condition during Lockdown is life as usual. Crippling anxiety may keep them at home. The terror caused by having your home put at risk thanks to uncertain finances and loss of jobs, having to navigate the shell-shocking experience of applying for benefits? Well, that’s something that is pretty standard for many of us. Sadly there is no furlough scheme for adverse mental health, or newly recruited staff to try and deal with the extra demand that austerity may have added to our already precarious health. No, instead we have had to become veterans of PIP assessors, whose jobs appeared to be to terminate our access to resources that help us stay alive, despite having an on average life expectancy rate that is 18/19 years lower than the rest of the (non-mad) population. Some of us battled 6-12 months challenging the welfare system. Others weren’t so lucky, starving, breaking down, too isolated from lost safety nets to recover. Some died by neglect, some died by suicide. There was outrage amongst the survivor community at the deaths this caused, but nothing from the general media that was like the COVID-19 deaths that have been directly linked to inadequate resources (ie. PPE of frontline workers), or the less overt links to inequality and discrimination which put people from non-White and lower socioeconomic-economic groups at higher risk. A lot of these situations Mad people know, and Lockdown isn’t much of a shift to isolation as usual.

I have to admit that like a lot of other people who have known the inequalities associated with ‘madness’, I felt real anger at people voting for the government that gradually stripped both us, and the services we received to keep many of us alive. For small, selfish, perceived gains, it was easy to look past the people who had been treated badly, hurt, even died due to the policies of the people they voted for. It has been horrific seeing more deaths linked to policies of the same government. It’s been less easy to hear people extolling the virtues of the NHS and it’s staff, clapping on a Thursday evening, when you know that the same people voted for the government that voted against NHS pay rises. The same people who had been against immigrants and being part of Europe – people who make up a huge chunk of the NHS. It made it harder to hear people being so upset at filling out forms for universal credit for the first time, knowing they were happy to close their ears to the cries of people who lived this way as part of life as usual. I just hope that some of these people will remember the pain, and the need for a safety net during hardship. The need for the NHS and valuing the people who work for it, including immigrants and Europeans. I hope that they will be a bit more kind towards people they previously saw as scroungers, or who were too lazy to work. The mental anguish and terror they have justifiably felt during the pandemic will hopefully be something that will provide a small insight into the existence of people who manage chronic mental health conditions. Hopefully they will vote for a government that plans to provide a safety net for anyone in the same situation they are hopefully only going to experience temporarily.

If there are good things that come out of the loss from COVID-19, I hope that it will include being kinder towards people who experience discrimination and vulnerability. I hope it will include ensuring that the people who govern us make sure that all people have basic needs met, even the people we struggle to like because trauma has left them angry, damaged, or wired in a way which that means others feel uncomfortable with their difference.

This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License. We ask that you seek our permission before you use any of our material – this includes researchers who want to harvest our data for analysis!

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