You're Going to Get It Wrong (And That's Not the Whole Story)
Here is something nobody tells the people on the other side of chronic illness: this is hard for you too, and you're allowed to say so. Not louder than the person who's unwell. Not as a competition. Just… yes. This is also hard.
Dug this one out of the archives. It's about a woman I adored and the time I forgot to lock her wheelchair. She was down the road before I even turned around.
Sometimes loving someone and getting it catastrophically wrong happen in the same two minutes. That felt about right for today's post. 🧡
You watch someone you love navigate something you can't fix, and the helplessness of that is its own particular kind of exhausting. You Google things at midnight. You rearrange plans without being asked. You try to read the room… is today a day they want distraction, or quiet, or practical help, or just someone sitting nearby not making it weird? You get it wrong sometimes. You say the thing that lands badly. You push when they needed space, or give space when they needed you closer.
And then you feel guilty about getting it wrong, on top of everything else.
There are different ways to be on this side of it. Some of you are in the room, partners and housemates absorbing the day-to-day weight of it, learning a person's body almost as well as they know it themselves, carrying a kind of vigilance that doesn't really switch off. Some of you are further away, on the end of a phone, in another city, another country, loving someone hard across a distance and feeling the frustration of not being able to just do something. Some of you are friends, hovering carefully, not wanting to overstep, sending the occasional message and hoping it lands right, wondering if you're doing enough, worried that asking too often is its own kind of pressure.
All of you are trying. That matters more than you know.
Here's the thing about getting it wrong: the people you love who are unwell, they are not keeping score. They're not tallying your missteps against your good days. They know you don't have a roadmap for this. There isn't one. You are both figuring it out in real time, in the middle of something neither of you chose.
Getting it wrong occasionally is not evidence that you're a bad supporter. It's evidence that you're a human one.
What actually helps, and this is different for everyone (which is part of what makes it so hard) is usually less about grand gestures and more about consistency. Showing up in small ways over a long time. Not disappearing when things get hard or boring or repetitive. Asking what would actually help right now instead of assuming. And sometimes, just being willing to sit in the uncertainty of not being able to fix it or the person you’re supporting actually not knowing what it is they need today.
You don't have to get it perfect. You just have to keep showing up.
That's enough. You're enough.
A few things worth knowing if you love someone with an invisible illness
"Let me know if you need anything" is kind but easy to ignore. Specific offers are easier to say yes to, can I drop food over, can I sit with you, do you want me to come to the appointment?
Their bad day is not a reflection of how much your support means. Sometimes it's just a bad day.
It's okay to tell them you're finding it hard too, gently, at the right moment. Pretending you're fine when you're not creates distance.
Distance is not the same as absence. If you're far away, you can still matter enormously.
You are allowed to have needs. Supporting someone well long-term means you also have to not run yourself into the ground.
Getting it wrong and trying again is the whole job. Nobody does this perfectly.
The Quiet Support Project | thequietsupportproject.com
