Sometimes, I feel like I’m drowning in other people’s good intentions. Everyone wants to help, to fix, to make things better, and I get it—they care. But it’s overwhelming when every day brings another link to an article, another message about a new medication, another study someone saw on social media. They want me to read everything, to keep up with the latest research, to try every possible solution, and sometimes it feels like they’re trying to push me into this never-ending cycle of managing and “fixing” my Parkinson’s. But all I want is to live in the present, to focus on the life I have right now instead of getting lost in everything I’m “supposed” to be doing.
For people who have someone in their life with a chronic illness, I wish they knew that sometimes the best thing they can do is just be there. Not with advice or research or suggestions, but just be there. Sit with us. Talk with us. Treat us like you always have—normally, without turning every moment into a reminder of what’s wrong. Of course, I need people to be aware of my limits, to understand why I may not want to do a certain thing. But I also need to feel like I’m still me, not just someone defined by an illness.
The best days are the ones where we forget about it altogether, where the focus shifts away from the next appointment, the next medication, the next possibility. Those days, when I’m not reminded of what I’m up against, are the days I feel most alive. And that’s what I wish people understood: the greatest gift you can give someone with a chronic illness isn’t a link to the latest study. It’s your presence, your friendship, your willingness to live in the moment with us—without needing to fix anything, without reminding us of what we already know. Just the simplicity of being together, as we are, is more valuable than any advice ever could be.