Waves of Worry

I consider myself to be a pretty calm and rational person, but it’s the early hours of the morning and I’m struggling to clear my mind of worries. This is after a day of being hit by waves of anxiety about the COVID-19 pandemic.

I’ve stopped trying to sleep in order to write this because I know from previous experience that writing about complex feelings and situations often makes them much more manageable.

The combination of almost a week without leaving the Castle, the constant stream of information of varying reliability, and the disruption of any sense of normality is making it hard to keep my more intrusive thoughts in check. The reality is that there are big things to worry about and I feel acutely aware of the vulnerability of the people I care about.

In order to try and unpick this jumble of worries I’m going to list them in order of intensity. I hope that by doing this I can separate the justifiable concerns from the ones that have less foundation.

A digital drawing of a red cloud with a black background with 6 circles containing drawings of people in each circle. The word 'worries' is at the bottom of the image in white text. The circles within the red cloud contain Fat Sister, Touretteshero's wider friends and family, Touretteshero's support crew, the wider disability community, Tourettshero getting sick, and Support system items such as bleach and frying pans.

1) Intense worry for my doctor sister – Fat Sister is a hospital doctor in a big London Hospital. She was on call last weekend and was caring for people with COVID-19. She lives a minute away from me and, as well as being physically close, we have a very close emotional relationship too. I’m extremely worried about her, both her getting sick, which feels almost inevitable, and the intensity of her work over the coming weeks, and the impact this will have on her. Everywhere I look, I see reports or statistics about health professionals’ deaths, and it’s very distressing. I’m not seeking these articles out, but COVID -19 is understandably dominating every conversation and media platform. I’m so proud of Fat Sister, but I also feel powerless to protect her, which is something I’ve tried to do throughout her life. This is compounded by not being able to see her in person.

2) Fears for my parents and wider family and friends – As the number of cases of COVID-19 in the UK rises it becomes increasingly likely that people I care about will become unwell. There are people in my family with very high-risk factors for developing complications and my anxiety around this is huge. Not being able to see them or check that they’re being sensible is intensifying these worries.

3) Concern for my disabled and chronically ill friends – As a disabled artist who’s passionate about disability culture and justice, I have lots of disabled friends. Many of them, like me, are currently self-isolating for their own protection. I’m trying to limit my use of social media, but it’s a useful way to stay in touch and give and receive solidarity. I feel very apprehensive about what the future holds for the disability community.

4) Worries about making my support crew ill – In order to limit the risk of infection I’ve reduced the number of people coming in and out of my house. I’m being supported by a small consistent crew – Claire, Erik and Leftwing Idiot. They’re being amazing and I’m lucky to have such a skilled team around me. Most non-disabled people are practicing social distancing, but this isn’t something I can do because I rely on physical contact and support for many basic tasks. I’m really worried that if I get unwell or contract the virus it’ll make them unwell.

5) Getting sick myself – I’m a bit worried about becoming unwell, not just about what the virus would do to my body but also about having to navigate a health system which I’ve had some really tricky experiences with, even at the best of times. I know how often health care professionals have made assumptions about my quality of life, mental capacity or physical resilience. I’m also extremely worried about ending up in a situation where I don’t have anyone who understands my requirements and can advocate for me. At a time when there are tough choices, limited resources and staff under pressure, I’m worried that it could be easy to make assumptions about my physical capacity to recover form any infection and that this could impact on how intensively I’m to be treated.

6) My support breaking down – I’ve been snappy a couple of times today and that’s made me feel pretty rubbish. I’m seeing the same three brilliant people a lot and I really couldn’t wish for a more laidback, funny, skilled and thoughtful crew. I don’t want to damage my relationships with them or make their jobs harder by being grumpy or erratic. But the uncertainty and anxiety about what’s happening, coupled with the chronic pain and fatigue I experience day to day, means that I don’t always feel at my best. I also don’t know what would happen if my support crew were to fall sick. The Government’s emergency Coronavirus Bill fundamentally changes many rights disabled people currently have around social care and support. I understand we’re in exceptional times, but the right support is so crucial for me, and for many other disabled people, that the complete removal of legal protection fills me with dread.

I feel a lot better just having written these fears down. Before I try to sleep, I’m going to come up with one thing I can do for each concern, that’ll help address it in some way.

1 My sibling – I’ll check in with Fat Sister tomorrow and ask her to share all her shifts with me when she has them, so I know when and where she’s working. I’ll also arrange a regular check in, whether that’s on the phone, Skype or by text when she’s busy.

2 My wider family & friends – I’ll organise regular check-ins with the rest of my family and agree a clear set of expectations around what they’re doing and not doing, as well as what they’ll do if they become unwell.

3 My Disabled Friends and Colleagues – I’ll continue to check in with disabled friends and where possible the Touretteshero team will help make sure others have what they need to stay as safe and well as possible. I’ll also advocate for the requirements of the disability arts community with the funders and decision makers we have contact with.

4 Keeping my support crew safe – I’ll check in with the crew and agree a cleaning routine, and I’ll make sure I keep washing my hands often. I’ll talk with my doctor and social care team about the sort of precautions that might help prevent the spread of the virus if I were to have it.

5 Getting sick – Writing about this concern helped me realise that my biggest fear is about being treated appropriately, and not having judgements made about me. Tomorrow I’ll update my care plan with clear information about my health and communication requirements. Another disabled artist shared a Hospital passport template that I’m going to complete so there’s clear information about my requirements that can be taken in at speed. I’ll also work hard at staying well and doing the things I know help keep me healthy.

6 Support and social care – On Monday I’ll phone social services and check in on what the options are if I find myself without adequate support. I’ve already asked my MP to make sure the requirements of disabled people are considered within any emergency legislation. I’ll also suggest that as a team we make some ground rules that acknowledge the unique pressures we’re all experiencing. I’ll try and make sure that I take it easy and stick to any agreements we make, and that I concentrate on resting and keeping myself emotionally resilient. Clear, kind communication feels more important than ever and I’m going to embrace this as much as possible, while also acknowledging that my own or other people’s responses won’t always be perfect.

It’s been a weird week, full of uncertainty.

What I’m certain of is the love and support of some incredible people.

At the moment love and friendship feel like the only things that matter.

One response to Waves of Worry

  1. barbara.renel says:

    Dearest Jess
    You’ve been in my thoughts every day. Just take care xxxxxxxxxxxxxxx

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