Things I Wish People Knew About Living with Invisible Illnesses

There’s a unique kind of pain that comes with being chronically ill — the kind that no one can see.

Invisible illnesses don’t show up on your skin. They don’t come with casts or crutches. There are no warning labels. No visual proof. Which means people often don’t get it. They see you smiling and think you're fine. They see you standing and assume you're strong. But what they don’t see is what it costs you.

So here are some things I wish more people understood about living in a body that looks “normal” — but fights every single day to function.

1. Just Because You Can’t See It, Doesn’t Mean It’s Not There

Pain isn’t always visible. Neither is exhaustion, nausea, dizziness, brain fog, joint instability, or a racing heart. Most of my symptoms don’t have a look — but they are very real.

I may look fine while I’m grocery shopping, but that trip might wipe me out for two days. I may smile in a photo, but that doesn’t mean I’m not in pain. Living with conditions like EDS, POTS, gastroparesis, and more means constantly balancing my “outside” with my “inside” — and they rarely match.

2. Good Days Don’t Mean I’m Cured

Chronic illness is unpredictable. I might have a day where I can get out of bed and even get a few things done. That doesn’t mean I’m better — it just means my body gave me a little more room to breathe.

Please don’t assume I’m “all better” when you see me up and about. I’m likely paying for it later. A “good day” is usually followed by a flare or crash. It’s not a sign of recovery — it’s a rare window of temporary relief.

3. I’m Not Lazy — I’m Pacing Myself

One of the hardest parts about living with an invisible illness is the constant feeling that you have to prove how sick you are. I wish people understood that I’m not staying in bed because I want to. I’m not turning down plans because I’m antisocial. I’m not skipping out on things because I’m lazy. I’m pacing myself. Because I have to.

Everything I do comes with a cost — and that cost changes daily. Some days it’s standing for five minutes. Other days it’s taking a shower. Sometimes it’s just responding to a message. Everything drains energy, and once it’s gone, it’s gone.

So yes, I rest a lot. I cancel plans. I say no. Not because I don’t care — but because I care about my health more. And every time I choose rest over guilt, it’s an act of self-preservation. A quiet kind of bravery.

Struggling with rest guilt?

I made a free printable set of gentle affirmation cards to remind you that rest isn’t something to earn — it’s something you deserve.

4. The Mental Load Is Just As Heavy

There’s a whole layer of chronic illness that no one talks about enough: the mental weight of carrying it all.

It’s waking up every day wondering which symptoms will hit hardest. It’s having to plan your whole week around one appointment, one errand, one burst of energy. It’s remembering medications, tracking flares, researching treatments, and constantly trying to advocate for yourself in a system that often doesn’t believe you.

And beyond all that? There’s the grief. The isolation. The anxiety that comes with never knowing if today will be the day everything crashes. There’s the guilt for not doing more, being more, showing up more.

It’s exhausting — even before you add physical symptoms to the mix. And when someone acknowledges that weight, even with a simple “I know this must be hard,” it matters more than they know.

5. I Still Want to Be Included — Even If I Can’t Always Join

It hurts when people stop inviting me. I get it — maybe I’ve said no a lot. Maybe I’ve had to cancel last-minute. But that doesn’t mean I don’t want to feel remembered, thought of, included.

Even if I can’t go, I still want to be asked. I want to be part of things in whatever way I can — even if it’s just sending photos, FaceTiming me in, or checking in after.

Connection still matters. A lot.

6. I Am Not My Illness — But It Shapes Everything

I’m still me. I still have dreams and goals and favorite shows and weird little obsessions. I laugh. I make art. I care deeply. My illnesses don’t define me — but they do shape my life in ways I can’t ignore.

They affect how I move, eat, sleep, breathe, socialize, and work. They influence how I make decisions, how I plan my future, and how I navigate each day. I don’t get to take a break from being sick — it’s always there, in the background, influencing everything.

So when I say “I can’t,” I’m not being dramatic. When I ask for flexibility, I’m not making excuses. I’m just trying to live a full life within the limits my body has placed on me — and that takes more strength than most people realize.

What I need most is to be seen as a whole person. Not just someone who’s sick, and not someone who’s pretending they’re not. Just… me. Human. Complicated. Doing my best.

Living with Invisible Illness Is Hard — But I’m Still Here