I wish I could invite people into my body for just one weekend. Not to feel pity, but to understand.

Because on the outside, I look like I’m managing. I can make it to a two-night camping trip with my kids. I can smile around the fire, walk slowly to the lake, laugh when the baby tries to eat pinecones. From the outside, it might even look easy.

But what you don’t see is what it takes to make that possible—and what happens after.

What you don’t see is that just “poking around the campsite” can cost me three full days in bed when we get home. I mean in-bed recovery, barely-moving, body-hurting, emotionally-fragile kind of rest. It’s the price of doing the thing, even gently. And it’s worth it—but it’s a steep price.

You don’t see the calculations I make leading up to every event. The quiet mental math of:

Can I afford this energy-wise? Can I crash tomorrow or the day after without everything else falling apart? What if one of the kids has a meltdown, the weather changes, or my legs buckle?

🌿 Medical Fact Check

A 2020 study published in Health Psychology found that people with invisible chronic illnesses reported significantly more social stigma, isolation, and pressure to prove the legitimacy of their condition than those with visible disabilities.

In other words: people with conditions you can’t see often feel like they need to justify their limitations.

And I feel that in my bones.

You don’t see me cancel something I was genuinely looking forward to—a birthday party, a shower, a family visit.

Not because I didn’t want to go, but because something small spiraled out of my control.

It rained, and my knees locked up.

I tripped on the stairs.

My toddler didn’t sleep.

My pain flared.

That thing I carefully saved energy for? Gone—and I’m the one left holding the guilt.

I don’t cancel because I don’t care.

I cancel because I have to.

And then I carry the heartbreak of knowing someone might think I don’t care.

That’s the hardest part.

Neurodivergence and Sensory Overload

On top of this, I’m the head of a household filled with neurodivergent brains and bodies.

That means we experience the world differently. It means routines are sacred, sensory overload is real, and transitions take effort.

The Autism Research Institute reports that sensory overload is a common issue for people on the autism spectrum, where environmental stimuli—noises, textures, smells—can feel overwhelming and lead to emotional distress.

Even joyful events can be overwhelming for my kids, and sometimes for me too.

We do our best. We really, really do.

But sometimes our “best” doesn’t look the way people expect.

Right now, my heart is aching because someone I love feels hurt by me. And I think—at the root of it—it comes down to misunderstanding. A gap between how things feel on the inside of my life and how they look from the outside.

Invisible illness can be lonely like that.

So I’m writing this not for sympathy, but for clarity.

If you know someone with chronic illness, neurodivergence, or both—please remember:

Just because they didn’t show up doesn’t mean they didn’t want to. Just because they were quiet doesn’t mean they didn’t care. Just because it looked “simple” doesn’t mean it wasn’t hard.

And if you are someone like me:

You are not lazy.

You are not flaky.

You are not failing.

You are living a life that requires constant adjustment—and you’re doing it with love.

Rest when you need. Say no when you must. And know that even when others don’t understand, your experience is valid.

You’re not invisible.

Even when it feels like you are.

🌿❤️ Mimi

Sources & References

American Chronic Pain Association. (n.d.). Living with chronic pain. www.theacpa.org Autism Research Institute. (2021). Sensory overload and autism. www.autism.com Earnshaw, V. A., Quinn, D. M., & Park, C. L. (2020). Stigma and quality of life in people with visible and invisible disabilities. Health Psychology, 39(2), 129–132.