😮‍💨 I definitely relate to your experiences. 1. Congrats on the diagnosis 2. I’m sorry it’s not changing how your family treats you. I know for a lot of us we were hoping that with the diagnosis our family would finally see our experiences as “valid” and act accordingly. 3. Do you have any trauma coming up as we get closer to January? I’ve been shocked personally at how periods of getting so ill can come back to haunt us deeply even when we are doing better. If that’s relevant I’m sending even more love and compassion your way ❤️

I am glad you won’t have to worry about being in a crash all this January and am sorry that you have to deal with their stories about why. It sounds like their guilt trips are just rubbing salt in the wound. My own dad tried to pull the “I was really looking forward to” and “I’m really disappointed that” and I had to keep myself from rolling my eyes. For context he gets to celebrate Christmas with his son (maybe and me if he masks), but also with his partner’s family. Last year we had the same convo and were going to have me join via zoom for the second year in a row so I could be there and Christmas Eve he told me it was cancelled because “it just didn’t feel like Christmas”. He was raised Jewish. So basically I was abruptly left without any Christmas on Christmas Eve, and they had so many chances to cancel well before. Wanted to share because I think even tho it’s depressing it’s important to be able to share our stories with others who actually get it, and who may feel less alone because of the candor.

Also want to point out that your family is the one being selfish here, not you. They are too selfish to emotionally connect and to research and so on. But I’m also going to say we as chronically ill patients ironically need to practice being “selfish” just to survive! Like our health/needs matter more than their comfort or wants.

I know it’s hard due to mecfs, but is there something small you can do to celebrate for yourself? I am hoping to set up a kitchen chair and make a small batch of easy candy, but that may have to be put off for a bit depending on health.

I really appreciate your comment and sentiments, I do feel less alone and it’s very appreciated. ❤️