My partner thinks I need to get on with it he says I need to focus on something else and can't understand why I'm in pain and calls me a hypercondriac in not so many words and I can see my family thinking the same so how do I get them to understand?
<3 don't worry, even at our darkest moments, we are warrior goddesses
You'll get to the point you'll no longer care what they think.
This is very true it's nice to know I'm not the only person suffering sometimes with this horrid disease it can feel like that x
It's an incredibly individualized disease and journey, at least we have each other when no one else seems to understand
I think that ultimately, others-no matter how close or how much they love you-will never truly understand. I've found three ways to handle this. 1: explain that endo IS a form of cancer-cells are growing where they shouldn't be and wrecking havoc. 2: be honest and don't push yourself too hard just to try and "keep up." Learn your limitations and reinforce your personal boundaries. Someone asks you to do something that'll knock you on your ass? No thanks, the endo won't let me. 3: lose the notion of letting people down because of the endo. It's been diagnosed, you've learned your personal limitations and now all you can do is what is best for you.
If loved ones ('cause really, who has the time/energy to explain all this crap to folks who don't truly matter?) continue to appear unknowing, realize that they can't know what you're going through and don't take on their emotions and feelings as your responsibility. It'll only add undue stress which will only make you feel worse. It's ok if they don't understand, as long as you know that you're living in a way that accommodates your needs.
My husband-who works in an ER and knows all about endo-suggested we drive an hour or more to a museum and walk around for a few hours because it'd be a "low impact activity" for a date day. I nearly laughed in face. His heart was in the right place, but even he just doesn't "get" how cumulative an effect any activity has on me and my pain.
That's why we have this community.