u/Western-River1386

So after 30+ years of symptoms, 1.5 years of subluxated rib, torn ACL from walking, getting sent back and forth through the K*iser system… today, my PCP (who previously refused to diagnose me because she “isn’t comfortable” due to the complexity) finally agreed to diagnose me with Hypermobility Disorder, “pending genetic testing for EDS”. I had to explain to her that hEDS does not, in fact, have a genetic marker, and that I actually already did genetic testing and it’s in my file, but ultimately I told her I don’t care about whether it’s HSD or hEDS at this point, because the Rheumatologist working on my MCAS diagnosis implied that he wants my PCP to make this diagnosis before we jump into confirming MCAS as the source of some of my issues and treating it.

At this point, I really think I need a specialist, but I haven’t been able to find one in my area that’s taking patients, so I’m kind of just begging for scraps at this point. Wondering if I should call the K*iser overlords and beg them to find me a provider that is more comfortable working with….. this *waves hands at self*

Does it matter whether it’s HSD or hEDS? Am I going to be taken more seriously either way? I know the answer is no there. But will it affect my treatment plan? Either way it seems all I’m being recommended is physical therapy (MCAS stuff aside). Which…. I can’t get scheduled because healthcare system broked.

Also, I remember reading a report from the EDS society that seemed to imply that HSD and hEDS might be consolidated in terms of diagnoses, so does it EVEN FUCKING MATTER 😭😭

I did not sign up to play this shit on hard mode

i went on a date with a trans woman and didn’t kiss her out of respect but then she asked if it was because my breath was bad.

misandry is real

Friends. Comrades. Countrypeople. Lend me your ears.

Today was intense, and we want to address how the earlier mod post was handled. The response made it clear that the original post was not as clear or careful as it needed to be. It created confusion, distress, and unnecessary conflict around gender, misogyny, misandry, trans men, and transmasculine people. We apologize for that.

Thank you all for engaging with our subreddit, even though today's threads were often overwhelming and probably a bit disruptive to your schedules. We apologize for any displacement of your routines or triggering content that you saw on the subreddit today. We just want to say, as a mod team and a collective, that this space has been known to the community as one that values inclusion, justice, and fairness, but we also know that those are words that have different definitions based on your lived experience. The last thing we want to do is to make this environment feel like one where people aren't allowed to participate in discussion.

To be absolutely, 100% clear.... people of all gender identities and experiences are welcome here, and gender discourse should not be used to invalidate, misgender, or dismiss others. In particular, this has recently affected the transmasculine people and trans men in our community, and that's why we have been putting an emphasis on their experience.

This community should be a place where difficult conversations can happen, but not a place where bigotry, misgendering, bio-essentialism, misogyny, transphobia, or dehumanizing gender discourse are treated as acceptable debate. People can have different lived experiences without dismissing or invalidating one another. This is a place where diversity of experience and opinion are welcome. It is not a place where we will tolerate bigotry or perspectives that perpetuate harm against other people. Discussions around identity are often extremely political, and no one person holds enough experience to be able to discredit the experience of another.

Please remember that all the people attached to a keyboard here are human beings, capable of saying things incorrectly, saying things they don't mean, and reacting emotionally. We try to remove comments only for explicit rule violations, and issue bans only when it serves the best interest of the community. Sometimes those decisions might not make overt sense to you, but I promise, we are trying to be as objective as possible when making these decisions. We are also autistic, too; that doesn't mean we're incapable of making mistakes, but we ask that you give us the kind of grace you would appreciate when you don't show up in the way you hoped you would.

Going forward, major moderator posts and stickied community statements will be reviewed and approved by the mod team before being posted. Individual moderators will still moderate threads as needed, but posts that represent the subreddit’s broader stance, rules, or values will be handled collectively.

We will also communicate more clearly with each other internally so that users are not left trying to figure out whether one mod’s wording represents the whole team.

Thank you to everyone who raised concerns, explained their perspective, or gave feedback today. We will not get everything right every time, but we are taking this seriously and want this community to remain inclusive, fair, and actively moderated.

From the bottom of our evil little hearts,
u/Western-River1386 (they/he)
u/Reaniro (they/them)
u/Altruistic_Fox5036 (she/they)
u/dwarf_bulborb (she/her)
u/SirBananaOrngeCumber (he/him)
u/CrimsonVixenPixie (they/she)