When Illness Has to Perform
Long Covid, disability assessments, and the hidden toll of being tested
Yesterday, I had a disability benefit assessment via video link.
It lasted over an hour. An hour that felt far longer once fatigue, brain fog, and the quiet pressure of being evaluated all kicked in at once.
The questions came thick and fast. Often the same question, asked again and again, just phrased slightly differently each time. I understand the theory behind this. It’s meant to test consistency, spot contradictions, and ensure nothing slips through the cracks.
But when your brain is foggy, when words don’t line up neatly anymore, when concentration drains like a faulty battery, it doesn’t feel like a neutral process. It felt very much like a trap that I was not equipped to deal with.
I found myself second-guessing everything I said. Not because I was lying, but because I was terrified of saying the wrong thing. I could sense the unspoken assumption hanging in the air: Are you exaggerating? Are you sure? Are you really that unwell? Do you need to push yourself more?
That’s one of the cruellest parts of living with a chronic illness. You don’t just have to manage the illness itself. You also have to constantly validate it to other people.
And validation, apparently, requires a lot of stamina.
By the end of the assessment, I was so exhausted that I couldn’t complete the physical part of it. My body simply shut down the conversation. No drama. No heroics. Just that familiar internal click that says, That’s enough now. So I had to explain that I did not have the energy for any more.
I already know how that will look on paper.
“Unable” becomes “unwilling.”
“Exhausted” becomes “uncooperative.”
“Not today” becomes “not at all.”
Today is a recovery day. One of those quiet, flattened days where everything feels heavier than it should and the only real plan is rest. I’m still exhausted, still foggy, still carrying the dread of the letter that will eventually arrive with a verdict on my worthiness.
If the funding is removed, it won’t just be inconvenient; it will also be detrimental. It will be frightening. It will affect the whole family. If I am denied, it won’t magically make me more employable, more productive, or more resilient. I don’t have the option of working right now, no matter how much I might wish I did.
There’s a persistent myth that support breeds dependency, when in reality it often just makes survival possible.
What these assessments reveal, more than anything, is how deeply our systems struggle with illnesses they can’t see. Pain without proof. Fatigue without spectacle. Cognitive fog that doesn’t show up on a scan. If you can walk into a room, speak in sentences, and hold it together for an hour, the assumption is that you must be fine.
But chronic illness lives in the aftermath. In the days after. Following the ‘performance’, the crash occurs. There’s no cast, no scar, no visible sign; there’s an unspoken suspicion that maybe it isn’t that bad.
Even feeling sorry for yourself becomes socially unacceptable after a while. Which is unfortunate, because today I am sneezing again, after a month-long cold, and I feel sorry for myself. Seriously, just how compromised is our immune system in the winter?!
So if today finds you tired, frustrated, fed up, or quietly angry at how much explaining you have to do just to be believed, you’re not alone.
However you are doing today, I hope you can forget, even briefly, the noise that surrounds chronic illness. The pressure to justify yourself. The need to appear credible, productive, or brave.
You don’t owe anyone a performance.
Rest is not failure.
Needing help is not a weakness.
And being exhausted by all of this is a completely reasonable response.
Be gentle with yourself today.
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Thank you for sharing your experience, Paul. My hearts aches at the unfairness of this process. My hope is that the more awareness we bring, change will come. Sending love and care.
Thank you for sharing this very grim experience. I saw my daughter have to go through similar testing for a different diagnosis and it was awful to watch. All of these tests are designed to "catch" fakers, at the expense of the vast majority of folks who are not faking anything. I'm so sorry you had to go through this.