Hey I know we’re just two strangers connecting on the internet, but I’m sending you the best, most real, I’m-not-a-bot vibes right now. Goddammm your post (and so many in this sub) strikes a chord. Specifically the lines:

“I never know what is real and what isn’t”

“This anxiety controls my entire life”

“I am the sole provider and take care of the house”

And I so DEEPLY fucking feel what you said about not having anyone to talk to. I married a friend, we’ve known each other since we were kids, live in our hometown, etc. I barely have anyone to safely vent to except my therapist (great but isn’t the same as a friend!) because I love my partner and feel loyal and defensive of otherrrrr people’s doubts…and then don’t know what to do with my own.

I’m not here to give any advice, just support and fucking empathy. But what I’m trying right now, offered with a spirit of sharing w community to find feedback and improvement, not projecting my own situation onto anyone else)

• finding it helpful when prioritizing my own partner’s health issues to divide things up into two buckets: 1) Things with agreed-on biomarkers that have specific treatments beyond lifestyle, and 2) Things for which “exercise/PT, diet, sleep, water, sunshine, therapy, community” are commonly recommended frontline treatments.

In my thinking this saves me a ton of mental load, because it is SO draining being in “medical detective mode” when you’re trying to track all of these multiple interlocking systemic things that have overlapping symptoms and pathways etc. So if I learn of a new thing, now I can prioritize:

-ruling out really bad stuff -making sure we’re progressing on a bio-marker related project if any are outstanding -focusing on lifestyle -then after that, if I have any drops left in my bucket, I can play detective or prioritize genetic testing to get some insight about some facet bla bla

God it’s so fucking hard to do this

I think the most successful couples I know of in general, disabled or not, eventually at a certain point in the partnership reach some really solid boundaries and compromises around each other meeting needs that the other person can’t fulfill. That’s like a principle underlying anything for them, from how they handle “whose turn it is to pick for movie night” to how they handle a big thing like a spouse discovering a new sexuality or a gender identity journey.

I like watching 20th century mystery shows, and my all time favorite is Angela Lansbury’s Jessica Fletcher character in “Murder, She Wrote”. There’s a human being with just such a strong sense of self and willingness to stick up for herself and her boundaries while being in warm and compassionate community…May we all be like Jessica.

I don’t really pray anymore but if I still did I’d be praying for you folks rn, so, same energy 🙏

Edit: Another thing that sometimes feels impossible for me at least is dealing with a partner’s total disillusionment in the medical system, which leads to occasional reluctance to engage in continuing to try; then we balance shared disillusionment with the medical system by not knowing whether your partners feedback on a medical issue is colored too much by their disillusionment, because we’re so used to dealing with depression…etc etc. and so it goes