If you have ever wanted a new phone because it was getting slow, or just didn’t do what you wanted, or stopped working, imagine having to keep it. Having to become your own maintenance crew, having to make changes that means you are not as connected to everyone as you want to be. Having to get technical support so often yet not as often as needed.
Having an invisible disease feels like there is a rogue app that is hidden. Rogue apps hog data but they also drain the battery. They even put a drain on memory. Over time that battery wears out, as it does for everyone, but it’s faster. It’s part of the operating system, but it is part of the code and trying to safely remove it takes a specialist.
There are apps we love but have to remove because we can’t afford the cost they have on data and battery, but we have to as they are the only ones we can uninstall. There is usually a short immediate relief, but pretty soon we are back to being vigilant about the state of the battery, and struggling with trying to start up each app, and losing productivity due to not just any one of these, but all.
And we can’t reset. We can’t switch bodies. We just have to keep going.
Specialist technicians have their place, they spend years learning the code, but like any technical support call it is never as easy you think. This might interfere with your other apps but you won’t know until you test them all.
The analogy works because most of western society, and beyond, now has a phone constantly with them. They are vital, they look after our social life, they let us know how to get places, the are vital now. And even more so for people with disease and disability to access services safely and quickly.
I have an invisible disease as well as an older phone. It too runs slowly, is reliant on a battery that doesn’t charge well and I am stuck with it as there is no other option on the market that works with my disease being degenerative. On top of that, I just can’t afford the upgrade to a new phone or plan. I have had to turn of most apps everyone else I know uses every day. But I need my phone. I haven’t called emergency services often, but I should.
There is further metaphor in there. My fast draining battery, my rogue app that keeps me focused on it or it goes out of control, and it still going out of control (not as often) it all leads to not being financially able to invest in upgrades that could help.
And I think this is part of the feedback loop that eventually leads to isolation.