What’s surprised me most through all of this… isn’t the treatment. It’s how much energy goes into carrying things no one else can see.
Not the appointments. Not the side effects. The invisible stuff.
Trying to stay positive for other people. Not wanting to worry family. Filtering what you say… and what you don’t.
You end up managing how others experience your illness… as much as the illness itself.
And that gets heavy.
I didn’t really understand that at the start. I thought being “strong” meant holding it together. Now I’m not so sure.
What’s helped me more is something simpler. Just noticing what I’m actually carrying in a given moment.
Not judging it. Not trying to fix it. Just being honest about it.
Because a lot of the weight isn’t the thing itself… it’s the effort of pretending it’s not there.
For me, that’s been a big part of what I think of as the “other fight”. The internal one that sits alongside everything else.
I ended up writing some of this down over time—trying to make sense of that side of things. It eventually became a book.
Sharing this in case it resonates with anyone else here. You don’t have to carry it all perfectly. Sometimes just being real about it… is enough for that moment.