u/Glad_Goose_2890

I have developed a sort of social anxiety. I have zero problems making friends, but when people realize how much heds impacts me, they often don't stick around.

I know it's not me because one of my longtime friends "Sarah" openly admitted to this. She said when my ehlers danlos took a turn after covid, she projected her own discomfort around my illness and told herself I was focusing on it too much and making it my personality. She has since apologized and is glad she reflected on her ableism as to not throw what is a beautiful friendship away.

And the thing is, I know in the US, even normal people are struggling with this. On the two x chromosomes subreddit there is a sea of threads about how we have an epidemic of people only liking the *idea* of friendship, but they often realize they don't want to put the work in and ghost. And given our economy, lack of time off, and general exhaustion, it makes sense to a degree. But not fully.

I'm just so frustrated. It's given me anxiety around opening up to people because I'm now constantly afraid of being too much. I've definitely developed rejection sensitivity because I never know when people will tell me I'm too much and leave.

And as for making friends with other chronically ill people, I find those friendships have their own barriers. Flaring at different times can mean a friend who lives in your building could be someone you don't actually see often. Or you're never sure if excuses are genuine or a nice way of saying they don't want to be friends. Or if they're having a hard time, when do you keep reaching out, and when is it ghosting when the friendship becomes one sided?

I am very extroverted so naturally this is hard on me. Just looking to talk to people that can relate. Also if anyone knows a term for this phenomenon, I am curious if it has a name.

Obligatory "not all men". I don't see this behavior terribly often but, I have seen it a few times now and decided to make a post.

I recently had a disrespectful encounter with a man on this subreddit and had to block him. He replied to a comment about women being disrespected and dismissed in medicine, and replied that men have it equally as bad. I replied that wasn't true, and while his experiences of dismissal are valid, it is not equal. Then I encouraged him to seek validation and community in a group specifically for male experiences, rather than speaking over and interjecting into women's. Then he said I was being divisive and said that everyone on this sub agrees with him except for me (triangulation).

I've seen this happen a few times now, both here and in the pots group, (and anywhere where the condition at hand primarily impacts women) where men perceive not being centered as being left out. When they are encouraged to seek or create a space where their unique experiences *can* be centered, and they can easily find people just like them, they hear "go away".

When the situation is reversed, women do not hesitate to make their own spaces. For example, adhd, autism, where most people diagnosed are male. There are thriving groups for women with these conditions in addition to the main co-ed groups.

I've never really heard this phenomenon discussed before so I thought I'd make a thread.

I also genuinely do not know how to respond to men when they are clearly in desperate need of validation, but are seeking it in unhealthy ways (like talking over and dismissing women's experiences to uplift their own) or if that should even be responded to at all.

Edit: women centered ≠ women exclusive

It's so insane to think that when my pots/mcas was completely out of control, that it was so intense and debilitating that I didn't even notice I was having vestibular migraines. I just thought it was another dose of my body giving me my daily ass beating. So when my PT suggested vestibular migraines I was blown away. It's crazy how it can mimic dysautonomia. So I guess once that was all treated the symptoms stood out more.

I thought people were being dramatic when they talked about how low our quality of life is. I guess not!! Like some people are disabled by migraines alone (which is valid!!) and I didn't even notice with the magnitude of dysfunction I was experiencing. I guess I'm in disbelief. It's amazing what a body can adapt to...

Found out I likely have this and it explains SO much. I definitely have the symptoms (feeling like the floor is collapsing, sinus pain, light/sound sensitivity, head/neck pain, irritablity, dulled emotions, anxiety rooted in nothing, fatigue, lack of appetite, shaking eyes etc).

Has anyone else dealt with this?

I am officially diagnosed and treated with cromolyn and ketotifen. The quality of life improvement I've had on these medications is indescribable.

I'm writing this because I live in a major US city. The last practice that saw us is now, as a group, no longer seeing MCAS patients. I am forced to see someone who doesn't take insurance to get my medicine. I also can't see her frequently as she does this super part time and is in a different part of the state. So she is difficult to reach when things go wrong. But she is all I have.

This is patient abandonment on a systemic level. How is this allowed?