u/Glad_Goose_2890

I decided to give this app a try as I am tired of mainstream dating apps, and I haven't seen many people review it.

-People have had concerns about able bodied people coming onto the app for the wrong reasons. I've seen the founders reassure people that there is a vetting process. While yes, I could choose to get verified, there was no process of vetting me before I joined. I encountered many obvious troll accounts and AI slop. There is nothing stopping someone with bad intentions from joining.

-The location feature doesn't work. I put that I only want to see people within 50 miles of my location. However, I was shown people literally all over the world, and it took quite a while to be shown anyone in my actual area.

-When someone "likes" you, there is no way to see where they are unless they disclose it in their profile. They could be in your city, or across the globe.

-I also saw many profiles of what looked to be lovely, well thought out profiles. It's clear this app still has a long way to go and I hope these issues will be resolved at some point. As of now, I feel these issues are too large for me to feel comfortable participating.

When someone is in a lot of pain, it is easy to percieve comments to be negative when they were written in a neutral tone. Also, I've noticed people tend to perceive questions from newbies, or questions looking for more context in a post as backhanded. I've seen autistic groups do tone indicators and it seems to work well.

Now I'm not asking for any formal rules, I just wonder if doing this might help to reduce conflict.

So an example would be:

"Where did you hear that from?" /gen or /genuine

"That treatment is considered experimental at this time"

/neutral

My knees were the only joint to not get points, so I thought they were normal. But no, after getting AFOs I realized my kneecaps are unstable, which isn't really tested for (I still qualified).

I have tried KT tape and it helps but it falls off so quickly. Open to hearing any suggestions if anyone else has dealt with this!

And if so, what do you do about it? I am seriously considering having my friends spray me like I'm Cassandra (moisturize me!!). I am SO CLOSE to being able to do normal exercises, however, I keep overheating because I don't sweat.

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I can't find anything out there about this. My doctor said there aren't any formal interventions at the moment.

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Any and all input welcome!!

Edit: I just lathered my entire body in coconut oil, then sprayed myself with water periodically throughout the workout. It worked! I actually made it through a 15 minute dance video on YouTube

My para had her first daughter as a young adult. Now that child is a teen and my para is an elder. She's literally going to die before her oldest becomes an adult. Feels like a bit of an oversight on their part. Has anyone else encountered this?

I have tried so many things over the years and this + low dose melatonin has been the only thing to ever work. Posting in case someone is looking for something to try!

I am so glad I found this group, it looks like maybe others can relate on here. I have heds, mcas, and have controlled pmdd and adhd. I ended up needing norethindrone to stop my periods because of how violent they were.

Before, the doctors threw every mental health medicine under the sun at me. Nothing worked, and some were so dangerous they put my life at risk. ADHD medicine only made me feel worse. After 15 years, I finally was given cromolyn and ketotifen. It has been life changing. Now not only are my food issues 90% better, but my adhd and pmdd symptoms are gone too. I do still have some rejection sensitivity but, that could be trauma related.

I wonder how many like myself are out there!

Edit: And I finally sleep now too. The doctors used to blame me saying it was bad habits. Now I can fall asleep with my phone in my hand. It was never my fault! My immune system is much stronger now too.

I recently was told I have been having vestibular migraines. Given my mcas/heds/dysautonomia/post concussion combo, I didn't notice because I thought it was just my body being angry at the weather.

My dysautonomia and mcas are well medicated at this point. Without the rain, I live a near-normal life.

I am stressed because I am in the US and am soon to lose my insurance. That means I cannot access anyone to help me with this unless it becomes an emergency until the fall when I get insurance again...or if I can figure something out in the meantime.

On rainy days, it is very debilitating. I usually get an aura first. Lights hurt, sounds hurt, it's hard to read, the pain is intense, nausea, poor appetite, ear/sinus pain, balance issues, feeling cold, exhaustion.

If anyone is also triggered by the rain, I'd love to hear about what helped you. I live in the Midwest so the rain can be very unpredictable.

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?