Hi everyone, I’m relatively new to posting online, so please bear with me if I get any terminology wrong! My girlfriend and I have been together for about a year and a half, and she received her EDS diagnosis just a few months ago. Ever since then, I’ve been trying to do as much research as possible to understand what she’s going through. However, I’ve realized that reading medical articles only gets me so far, and I really want to understand the lived experience beyond what’s written on paper.
Right now, we mostly hang out at her place or mine to ensure she doesn't overexert herself. While I’m happy to do that, I’d love to find ways for us to get out of the house and do different things every now and then, something we could both enjoy. I personally enjoy places like malls and exploring, but I’m very conscious of the fact that walking for hours or standing on hard surfaces can be incredibly taxing or even harmful for her. I’m looking for suggestions on more laid back activities that would allow us to enjoy our time while keeping her comfort and physical safety the top priority, I don't want to cause her any unecessary pain just because I wanted to 'go out and do something different'.
Beyond just activity ideas, I’m also looking for advice on how to be a better support system in general. I consider myself an understanding person, but I often worry about accidentally making her feel frustrated or guilty about her limitations. She always reassures me that it's okay, that I'm doing fine, but sometimes she gets sad about not being able to do much stuff. I want her to feel seen and supported without making her feel like her diagnosis is a limitator or something bad. I’d love to hear from this community about what you find helpful from a partner, or even what things I should be careful to avoid that might not be obvious to someone without the condition. I just want to make sure I’m handling this in a way that makes her feel safe rather than restricted. Thank you all in advance for any insight you can share. ❤️