I wrote recently about burn out and the steps we take at Touretteshero to help prevent it. While I’m lucky not to get burnt out by my work as an artist, I’m feeling utterly exhausted by the relentless work of being a disabled person living in the UK.

The extra labour and pressure never seem to stop. Some of the time it’s large scale issues like journalists making fun of access documents or freedom days, or politicians making announcements about Social Care. Other times it’s stuff on a very personal level, like long-winded assessments that relate to my support.

Currently it’s this last issue that’s left me feeling particularly worn down. My support at home is being reviewed and transferred to the NHS, a process that started back in January. Five different people have been involved so far, and each time someone new turns up, I have to explain my requirements all over again. I’ve spent 52 hours in meetings, reviewing care plans, and sending emails so far. I have to put in the time because getting the right support is essential to my safety and independence, but the process is complex and tiring.

This is all happening alongside my actual job and the ongoing issues of finding good support workers. Erik returned to Spain recently which meant I needed to recruit for new weekend workers. I interviewed, did trial shifts, and inducted two new people, but tonight, within the space of ten minutes, they both told me they were no longer available. I know the point of trial shifts is to find out if the work feels right for all involved, and while I’m confident I didn’t do anything wrong, this inevitably felt quite personal.

I’ll have to start the recruitment process again and, in the meantime, reach out to my friends to make sure I’m not left with any gaps. I used to describe this process as being a relay race where I’m the baton. Next month it’ll be 10 years since the race began, and I’m definitely feeling the strain of this decade-long marathon now.

I’ve got loads of great support, and a personal budget from social services that meets my requirements, both incredible privileges after years of Austerity Politics and the more recent COVID legislation. In some ways writing this post feels like a betrayal of all those who put time and energy into helping me navigate the system, but tonight I’m feeling frazzled, and I think it’s important to acknowledge that.

One of the things I’ve been finding particularly hard is the constant uncertainty around my support – both how it’s funded and who’ll be providing it. This type of insecurity is something that lots of people have had a taste of in the last 18 months, but seeing the pressure ease off for lots them as COVID restrictions lift has made the perpetual uncertainty I live with seem even more pronounced.

The level of paperwork and admin involved in being a disabled person is rarely discussed. I’m lucky that my colleagues are good at acknowledging this and take some of this work away from me when they can. But there’s still a steady stream of disability related bureaucracy – claim forms, timesheets, monitoring requirements, assessments, and reports.

Workplace burn out is something I’ve seen lots of people talk about and there’s a growing acknowledgement of this, but I haven’t found much discussion of the burn out caused by ableism and disability related bureaucracy. Sadly, I don’t have all the answers, but here are the commitments I’m making to myself tonight:

• Be kind to yourself and recognise that acknowledging these frustrations isn’t ungrateful or disloyal. At the same time, try to focus on the positive elements, like the friends who step in to help.

• Take time to rest and recover.

• Reflect on any practical changes you can make that might stabilise your support arrangements.

• Finally, block out some time each week to respond to Disability Life Admin.

I know the immediate pressures will pass, and that they will be replaced by others in the future.

To every disabled person grappling with the day-to-day grind of systemic barriers, I send you love and solidarity.