There’s a particular kind of exhaustion that has nothing to do with the joint pain, dysautonomia flares, or GI symptoms. It has everything to do with how you’re expected to present those things to other people, specifically your healthy, able-bodied friends or coworkers or strangers on the street. If you have Ehlers-Danlos syndrome (EDS) or Hypermobility Spectrum Disorder (HSD), you might know it well: the sense that being sick isn’t enough. You also have to be sick correctly.
I’ve started calling this “performing wellness,” and once you recognize it, you realize it sneaks into many areas of your life.
What “Performing Wellness” Actually Means
Performing wellness is the act of hiding, lessening, or downplaying your symptoms and effects from your chronic illness. It’s the hidden, unspoken job of constantly demonstrating to the people around you that:
- you’re trying hard enough
- you can keep up
- you don’t need special treatment
- you’re resilient enough
- you’re improving enough
- you’re not giving up
None of these are neutral facts about your health. They’re performances, evidence you’re expected to keep producing, on demand, for an audience that rarely realizes it’s watching.
Masking to Keep Other People Comfortable
A lot of this performance isn’t really about convincing people you’re well. It’s about managing their discomfort with your illness. You minimize your pain, you don’t mention the sleepless nights, and you definitely don’t talk about the gnarly GI issues you’ve been having. You show up to things you probably should’ve stayed home for instead, because canceling again feels like it costs you something you can’t get back.
This is masking, and it’s exhausting in a specific way: it’s actively producing a more palatable version of yourself.
The Narrow Window of “Acceptably Sick”
There’s a social sweet spot for chronic illness, and it’s narrow. If you appear too well, people question whether you’re exaggerating, whether you really need the accommodation, the modified plans, or if it was truly excusable to miss events. If you appear too sick, people pull away. Being “too sick,” it’s heavy, it’s inconvenient, and most people don’t know how to reply or support someone going through things of that nature.
What survives in that narrow window is the “inspirational warrior”: the version of chronic illness that’s uplifting, that has a redemptive arc, that makes other people feel hopeful rather than helpless. Because in many cases, those stories are presented after the “hard” was dealt with in private. The “now doing better” person is much easier to digest from their perspective.
What doesn’t survive is the actual daily reality of a connective tissue disorder: the boring, repetitive, systemic breakdown of a body that doesn’t hold together the way it’s supposed to. The subluxation that happens reaching for a coffee cup. The fatigue that isn’t the touching-grass-and-getting-more-sleep-will-fix-it kind of fatigue. That version doesn’t inspire anyone. It just is, and is uncomfortable.
So the pressure narrows further: don’t just be sick, be inspirationally sick. Be sick in a way that gives other people something to feel good about. Or, be sick in private, and come out and talk about it when you’re better.
The Cost of the Performance
The toll here is psychological as much as physical. You’re not just managing a body that dislocates, aches, and misfires. You’re managing everyone else’s experience of that body, your body. You’re doing the emotional labor of making your illness understandable and acceptable to people who mean well but are uncomfortable sitting with something that doesn’t resolve.
And because EDS and HSD are often invisible, inconsistent, and poorly understood even by clinicians, you’re already fighting to be believed. Performing wellness on top of that isn’t optional in the way it might sound – it can feel like the price of keeping relationships, keeping a job, keeping people from writing you off as dramatic or fragile.
Recognizing the difference between “I feel resilient right now” and “I have to perform resilience or I’ll lose social capital” is its own kind of relief. It doesn’t fix the joints or the dysautonomia. But it does mean you can stop treating your own exhaustion as a PR problem.
Key Takeaways
- “Performing wellness” is the hidden expectation to constantly prove you’re trying hard enough on top of managing the illness itself.
- Masking symptoms to keep others comfortable is real emotional labor, separate from the physical toll of EDS/HSD.
- There’s a narrow social window for “acceptably sick”: people embrace the inspirational-warrior narrative but withdraw from the daily, unglamorous reality of chronic systemic breakdown.
- This creates a psychological cost, the burden of managing other people’s comfort with your illness, on top of managing the illness itself.
- Recognizing these moments and actively choosing to honor your body is a form of care to yourself.
By Tayler Goectau
clinical research coordinator,
disability advocate
@distaaybled
Sept, 2026
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