Let's Talk About Invisible Illness
Invisible illness, empathy, and what it means to be seen.
Invisible Illness. I'll admit, before I experienced it firsthand, I didn't know much about it. Honestly, I probably said some of the same dismissive things others say. But once you're in the club, you can't unsee it. And you can't opt out.
Once you're in the Invisible Illness Club, the only way is through.
What Is Invisible Illness?
Invisible illnesses are conditions that don't come with visible scars, casts, or clear lab results. You often can't spot them on an X-ray or recognize them at a glance. On the outside, everything might look "fine." But that doesn't mean it is.
These conditions are very real, and often life-altering. They include things like ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome), fibromyalgia, POTS, dysautonomia, IBS, autoimmune diseases, neurological disorders, and mental health conditions (to name a few).
And now, with the rise of Long COVID, this hidden club is growing fast. Healthy, active people are being blindsided by chronic illnesses 1. I know this firsthand.
I won't get too deep into the data weeds here because that’s not whtat this post is about. But for those who like numbers, current estimates suggest that at least 10% of COVID infections result in Long COVID 2 3 4, and that number increases with reinfections 5. These symptoms can range from inconvenient to completely disabling. And they're invisible to the naked eye.
Invisible Illness Symptoms Are Complex, and Real
Invisible illness doesn't follow one script. It might look like bone-deep exhaustion, brain fog, dizziness, joint pain, GI issues, or intense anxiety and depression. Sometimes it's physical. Sometimes it's emotional. Often, it's both.
Some days are manageable. Other days, getting out of bed feels impossible.
Here's the truth:
If you don't understand invisible illness, be grateful that you don't.
Because if you've never experienced the confusion, the gaslighting, the isolation, and the silent suffering, consider yourself lucky.
And if you don't understand, please accept that you don't.
Unsolicited advice from the outside rarely helps. When you haven't walked the path, trying to "fix" it or question it often does more harm than good.
Backseat quarterbacking someone's lived experience is, at best, dismissive and, at worst, isolating, invalidating, and dehumanizing.
Instead of advice. Ask how you can help. Offer support. Let them know you care. Better yet, take some time to educate yourself on their condition. Don't assume. Don't dismiss. Don't judge.
Because What You Don't See Is a Full-Time Job
The person you're quietly judging or questioning? They've probably spent hundreds, maybe thousands, of hours researching their symptoms, chasing diagnoses, and trying every treatment they can afford. Many have spent tens of thousands of dollars on specialists, labs, supplements, diets, and therapies.
Not because they're weak.
Because they're fighting to get their life back.
Being careful isn't a choice. It's survival.
Every decision, from how to spend their energy to whether it's safe to attend a gathering, carries weight most people never have to think about. They're not overreacting. They're managing risk in a world that often refuses to see it.
Doctors don't always have answers.
Medicine is still catching up to many of these conditions. There are gaps in research. Gaps in training. Gaps in empathy. So no, they're not imagining it, and they have likely tried a myriad of specialists, allopathic and alternative. This is why people with invisible illnesses become their own advocates. They often know more about emerging science than their providers. Not because they want to but because they have to.
There's a special kind of trauma that comes from suffering through something that has no clear name, no confirmed treatment, and no widespread understanding. And it gets worse when the people around you don't believe you, or even worse, think you're the problem.
Of Course, It Affects Mental Health
Living with chronic illness affects your whole being, including your mind. Is it "all in their head"? No. But yes, the head is part of the body. And constantly feeling dismissed, disbelieved, judged, and exhausted takes a toll.
Depression and anxiety are common. Not always as symptoms of illness itself, but as reactions to a life turned upside down, a life lived on pause while the rest of the world moves forward.
Judging someone's reality isn't helpful. And telling them they're "living in fear" completely misses the point.
They're not 'living in fear'. Their fear is their reality.
They're living in a world that doesn't see them.
A world where the lack of empathy makes everyday life feel unsafe.
People With Invisible Illness Are Some of the Strongest People I Know
They live through days most couldn't imagine. They endure while feeling forgotten. They become advocates, researchers, and warriors just to get through daily life. They grieve the life they had while trying to make peace with the one they have now. They lean into the uncertainty their life has become. The same uncertainty so many others have the privilege to ignore.
Because here's the thing: invisible illness is scary. It's uncomfortable.
We humans don't like uncertainty. We want answers. We want fixes. We want control. So, we judge, gossip, or find some other cognitive loophole to distance ourselves from what we don't want to accept.
But for those living in the shadow of invisible illness, uncertainty isn't something to avoid. It's their daily reality.
There's no denying it.
It is their life.
So…
You don't have to understand. You don't even have to help.
But you also don't have to judge.
A little empathy goes a long way. A little listening. A little belief. A little less judgment.
And that small shift in how we respond?
It can mean everything to someone who already feels like they're fighting this battle alone.
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Porter, C. K. et al. Clinical and functional assessment of SARS-CoV-2 sequelae among young marines – a panel study. The Lancet Regional Health – Americas 39, (2024).
Davis, H. E., McCorkell, L., Vogel, J. M. & Topol, E. J. Long COVID: major findings, mechanisms and recommendations. Nat Rev Microbiol 21, 133–146 (2023).
Xu, Z. et al. Excess risks of long COVID symptoms compared with identical symptoms in the general population: A systematic review and meta-analysis of studies with control groups. J Glob Health 14, 05022 (2024).
Peter, R. S. et al. Persistent symptoms and clinical findings in adults with post-acute sequelae of COVID-19/post-COVID-19 syndrome in the second year after acute infection: A population-based, nested case-control study. PLOS Medicine 22, e1004511 (2025).
Nguyen, N. N., Nguyen, Y. N., Hoang, V. T., Million, M. & Gautret, P. SARS-CoV-2 Reinfection and Severity of the Disease: A Systematic Review and Meta-Analysis. Viruses 15, (2023).
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