- Aug 21, 2025
Applying for Disability: What to Say & Not Say
How to Talk About Your Illness (Without Getting Screwed)
If you’ve ever tried to explain ME/CFS or Long Covid to a doctor, a disability insurer, or some government bureaucrat who still thinks “fatigue” just means you're tired... you know the drill.
You say too little, they assume you’re fine.
You say too much, they assume you’re faking.
You smile, joke, or show up clean and dressed? Must be healthy.
It’s a system designed for people with castable limbs and clear lab results—not invisible illnesses that fluctuate, crash, and defy logic. So if the whole thing feels like trying to win a rigged game while exhausted and suffering from brain fog... you’re not wrong.
But there are ways to talk about your symptoms that reflect your truth and protect your claim.
Let’s break them down.
Your Words Can and Will Be Used Against You
And while most doctors aren’t out to sabotage you, they may unintentionally downplay your condition—especially if they’re unfamiliar with ME/CFS or Long Covid. It's not malice. It's usually rushed paperwork, vague guidelines, or a misunderstanding of how debilitating this illness really is.
That’s why it’s not enough to “describe how you feel.” You need to translate your experience into functional limitations—the things you can’t do consistently, safely, or predictably.
Because here’s the kicker: even hopeful, normal things like…
“I’m feeling a bit better.”
“I hope to get back to work.”
“Some days I can do more.”
…can be twisted into ammo to deny your claim.
So here’s the shift: You’re not lying. You’re translating. You’re taking the chaos of fluctuating symptoms and turning it into language the system understands.
Use Their Language, Not Yours
The word you need to know? Regular.
Instead of trying to convince someone how sick you feel (which, let’s face it, is almost impossible to measure), describe how inconsistent, unpredictable, and irregular your functioning is.
Try:
“I can’t maintain a regular work schedule due to post-exertional malaise.”
“My symptoms fluctuate daily, making reliable attendance or performance impossible.”
“Even on a ‘good’ day, I can’t sustain cognitive or physical tasks without triggering a crash.”
Good days don’t matter if you can’t repeat them. Disability is about reliability, not intensity.
Avoid the “Future” Trap
Insurers love to ask:
“So, when do you think you’ll be back at work?”
“Are you feeling more optimistic about recovery?”
Don’t take the bait. This is a trap disguised as small talk.
Instead, ground your responses in the present, like:
“My symptoms are too unpredictable to plan ahead right now.”
“I focus on managing each day as it comes—I can’t make long-term predictions.”
You’re not being negative. You’re being accurate.
Don’t Perform Health
This part is brutal, but important.
We’re conditioned, especially as women, to downplay pain, smile through suffering, and not “make a fuss.” But in a disability assessment, that instinct can literally cost you your claim.
Here’s what that looks like:
You say, “I’m managing,” when what you mean is “I’m barely surviving.”
You say, “Yesterday was okay,” but forget to add “...and today I can’t sit upright.”
Context is everything. If you mention a good day, always explain the payback. Post-exertional malaise is real, and you need to connect the dots for them, every time.
Keep It Medical, Not Emotional (Even If It’s Both)
Your doctor may care about your grief, your fear, your isolation. The insurance company does not.
When filling out forms or attending assessments, focus on functional impact:
“I need help preparing meals due to cognitive and physical fatigue.”
“I cannot sustain attention or make decisions consistently due to brain fog.”
“Showering or dressing independently often leads to worsening symptoms.”
This isn’t about how sad or scared you are (even though you are—it’s okay). It’s about what you can’t do reliably, consistently, or safely.
Doctor Forms: Make It Easy for Them to Help You
Doctors are busy. Many are overworked. Some don’t understand ME/CFS or Long Covid at all.
Here’s how to set them up for success:
Bring a brief symptom tracker showing your day-to-day fluctuations.
Write a summary of your functional limitations they can reference while filling out forms.
Use language that aligns with disability criteria (like “unable to perform the regular duties of my occupation” or “unable to sustain consistent cognitive/physical activity”).
If possible, bring research-based handouts (from places like Bateman Horne or Solve ME) that explain PEM and post-viral syndromes.
Don’t assume they know. Help them help you.
Social Media: Assume They’re Watching
It’s gross, but true: insurers hire investigators to scan your social media.
That picture of you smiling at a family BBQ? Could be used to argue you’re “not that sick.”
Context doesn’t matter to them. Optics do.
If you post, keep it real and if in doubt, keep it private.
Record Everything (If Legal Where You Are)
In many places (like Canada), you’re allowed to record your own conversations, including those with adjusters.
Why does this matter?
Because gaslighting happens. Miscommunications happen. And having a record can protect you if someone tries to twist your words or minimize your illness.
Check your local laws and if it’s allowed, record those calls.
Grieve It, Then Fight for It
Let’s be honest: applying for disability isn’t just paperwork. It’s grief.
It’s grief for the job you lost, the independence you once had, the version of yourself who could push through anything. The system forces you to confront all of that in the most clinical way possible—through forms, checkboxes, and sterile medical language.
And yet, grief and paperwork go hand in hand here. Filling out forms forces you to list every single thing you can no longer do, in black and white. It’s like writing an obituary for the old you—line by line, checkbox by checkbox. No wonder so many people cry halfway through.
But here’s what matters: you didn’t “give up.” You got sick. And now, you’re doing what sick people do, you’re asking for help. Not because you want to. Because you have to.
That doesn’t make you a burden. It makes you human. It makes you someone navigating a system that was not built for fluctuating illnesses, and that takes guts most people will never understand.
So yes... grieve it. Let yourself feel the anger and the sadness. And then, when you’re ready, fight for it. Fight for the support that lets you survive. Fight for the recognition that ME/CFS and Long Covid are real, devastating illnesses.
Because you deserve it. Not as charity. As your right.
Final Thoughts
You don’t owe the system your optimism, your good attitude, or your best performance.
You owe it the truth. Your truth, told clearly, consistently, and in the language they can’t ignore.
So take the pressure off. You don’t have to be perfect. You just have to be honest... strategically.
And then? Rest. Because filling out one form with ME/CFS or Long Covid is enough to knock anyone out.
Helpful Links
CANADA
https://www.canada.ca/en/revenue-agency/services/forms-publications/forms/t2201.html
Main US Disability Tax Programs
1. Social Security Disability Benefits (SSD/SSI) https://www.ssa.gov/disability
2. IRS Disability and Tax Benefits https://www.irs.gov/pub/irs-pdf/p3966.pdf