Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
To become a member, simply click the Register button at the top right.
(this link came in an email from the Unrest team)
I was watching another program on PBS tonight and suddenly I heard Jen's voice! -- A promo for the showing in Prime Time tomorrow night. Stunning!
Sorry for you, but good to know you have experienced the no response as well. In my case, I don't feel like I should try talking to them for fear of pushing them away even further. People who are not related to me seem to have no desire to be bothered with Hearing my problems. I've been told so often that I should just talk about joy. But I have no family who is stuck with me in their lives, I'm not needed by anybody so they do not want to be inconvenienced....people only reach out if they need help. I followed the link above to an interview of Brea, and discovered a congretional hearing on YouTube she was part of. I'm thinking of sending that out. Perhaps people would rather hear something less personal.
That's fantastic you have a sister who does "get it". I had a fleeting thought of sending the link to my ex who literally said "it's all in your head" that I didn't have the energy to do all the driving to live outside the city where she wanted to be near her family. However, I still feel enough pain over that 9 years that I don't want to risk engaging in a dialogue with her! I loved the part in the film though where the husband actually came back to the marriage after realizing it was genuine. Hope they stay together and it was a "gee, you are in a film proving me wrong so it will make me look good to be a hero and remarry you".@Starsister - I agree, it's hard. I too always try to be positive and upbeat when I talk to people but most don't want to hear what's going on anyways, and so I just stop trying. It takes too much energy dealing with non-supportive people. Actually, I tell very few people about ME/CFS (not that I run into a lot of people anyways!), because no one gets it. And I don't really tell anyone how hard it is to live with. I have one sister who does get it. She has rheumatoid arthritis but has told me many times she'd rather have RA than ME/CFS. She believes me and has imagined herself in my shoes, but that's very rare. The whole thing is rather crazy making. This board is a lifesaver because everyone here knows exactly what you are going through.
I think this is why this documentary is huge. It's starting to educate people about the reality of ME/CFS. My ex-husband actually watched it, much to my surprise. When we were together, he basically said it was all in my head. so he's changing (slowly).
I like your idea of a CFS etiquette guide!