u/slamdancetexopolis

One thing that comes up often when I've been reading about OCPD is that there's a sense of "coldness" that can happen. It seems some agree this can be perceived as such when it really isn't, or isn't intentionally, it's just, y'know, part of the way it is, - does this seem fairly universally applicable to y'all or is this something that has shades of nuance? This diagnosis is VERY nuanced so I'm trying to really understand that aspect.

Secondly, I was told by my therapist that one of the more digestible major factors between OCPD and, for example, OCD+Autism, was that OCPD behaviors may more often than not involve controlling others to try and control the situation/environment/problem/etc and/or due to the individual's perfectionist tendencies.... whereas OCD is FAR less likely to exhibit this behavior, even with the complicating factor of autism (which could look like this, when involving others)... although I am starting to get the impression that while this can and does happen, I'm wondering how many people with OCPD do not do this? IE: or is it something that, if one is aware of the social constraints and is like "yeah I know I can't just make people, or tell people what to do, etc" that this may come out in more subtle ways, or can be held back or repressed, even if it's stressful and might cause some psychic tension internally, lol.

I am certainly OCPD questioning but have a TON of pertinent related diagnoses genuinely, but I'm not seeking advice on me or anyone else's "do I have," xyz, more so, I'm trying to get clarity on how these traits present and want to hear y'alls LIVED experiences because I'm finding a lot of literature to be overly dry and lacking of nuance (shout out to Dr Neff though for having a lot of nuance and intriguing things that resonated with me).

Is that a mistake? I'm just kind of baffled by this. It's literally pharmacology.

I saw a reel from a person with clEDS who talks about different ways that different subtypes can effect different body parts, etc. It was super informative! I found myself aligning with some of the clEDS symptoms. I am diagnosed with hEDS and had genetic testing to rule out other stuff (although I DID learn on another sub by accident that Invitae doesn't test for one of the genes that indicates clEDS and apparently some people with hEDS has this mutation too? I know hEDS doesn't have a genetic marker, but that some folks with hEDS have this variation or something).

(Be nice, I'm not the most educated but I'm also pretty informed)

Anyways, I started reading about how some people do have symptoms of other subtypes despite not having the genetic implications or full on criteria met etc, but how often do people with hEDS have symptoms of other subtypes?

For example, I have edema in my left foot since I was 3 (I'm 31 now), some swelling in the ankles in both sides but worse in the left. We've never figured out what it was, and I have "joint effusion" in that foot for some reason. It was worse when I was a kid but the edema never quite went away and does not improve with elevation, etc. No pain, no heart issues. We suspect it COULD be veinous insufficiency, however, when I saw this video discussing edema in clEDS, it piqued my interest. I saw elsewhere that some folks with hEDS report having this issue as well although it isn't as common. I have NEVER met or seen anyone else with this particular issue, and every single doctor I've ever met (even in two different countries lol) knew why it was happening, although nobody was worried (and obviously not a blood clot thing b/c I'd be dead otherwise). I don't believe it's nutcracker or May Turner syndrome etc.

Another one I saw on this video was about clinodactyly - I have this and had NO idea actually until I went to a hand physical therapist who specializes in hypermobility issues. I see that it can be genetic and not inherently due to EDS, but that it's more common in clEDS.

So again, not necessarily hugely defining features, I had my genetic test (which I now have questions about), I don't have stretchy skin (that's one of the features I don't have), so I'm not trying to say I secretly have clEDS, but it is weird to learn I can in fact have symptoms of another subtype! This wasn't something I've been able to discuss yet with my doctor.

Thoughts?

Spoiler bc idk I'm feeling real weird and bad right now

Edit: for some reason I can't view the comments, I'm getting notifications but it won't let me see them :(

>!&#x200B;!<

>!I've been dealing with POTS for a long time, but wasn't diagnosed until I was 29. I'm 31 now, and on my birthday last year-ish, I quit my job, because I got in touch with vocational rehab,... I thought it could or would change my life.... except there's a waitlist now and it's not moving due to some kind of funding freeze which I only learned about through another VR person (who I got in touch with through a group called WorkSource here, not sure if this is in every state or not, but it's like a state funded thing). WorkSource got me a certification for a job, but didn't really acknowledge my stated disabilities, and the job I was certified for often requires people to drive (like, REALLY requires), and finding a place that doesn't do this is hard, but I'm still trying. My entire family is dead except for my half-sister many states away. I have a small amount of inheritance from our father who passed, almost half of which is now gone. I've been trying to offset the cost of living by staying in school and making sure to get financial aid, but it's still a drag.!<

>!I was holding out to really start looking now, because I was going to have top surgery, and I did, and I'm now almost 6 weeks out. A few weeks before surgery, my long term partner of almost 8 years broke up with me. We still live together, because we can't really move out or separate right now. Her life isn't easy and she deals with a lot of her own problems, but she has family support and a car and two part time jobs and a closer (physically) group of friends (and does not have POTS or hEDS).!<

>!We get along, and she helped take care of me during surgery, but there's some things that still go on that feel really unfair. I do all the cleaning and always kind of have for the most part, the laundry, the dishes, and I can't really keep the house clean because she doesn't clean up behind herself most of the time and her stuff is everywhere. She tries to medicate for ADHD and stuff but isn't tolerating meds, so I have a LOT of empathy, but at the same time, it just keeps happening. We also aren't together anymore, so it just feels.... idk. Like I love her and we are still very close but I'm tired of making excuses internally to justify her behavior, because we can't really have a conversation a lot of the times and I don't really feel safe having one at times.!<

>!My goal is to try and find a viable work from home or hybrid part time work situation while in school so I can have some income and try to hopefully move out or figure something out and/or get a car. I really don't want to move, but I live in a two bed and it would be ridiculous to pay for it all myself, if I even could (lol, I would be working to basically cover rent and then still using savings to pay my bills, it wouldn't be a viable long term solution). I don't want to upend my life again after moving so often....!<

>!I have a therapist and so on, but I just feel really fucked. It's hurtful because she goes on trips with her friends last minute and doesn't tell me until she's leaving, and I try to be happy for her, but it sucks when I'm stuck inside and am never invited, can't go anyways (this time due to a weirdly freak incident thing that I didn't think would happen to me), and recently had a bad depressive episode and made it clear that I was feeling unacknowledged and uncared about... it was really really bad (apparently surgery can trigger fuckin' periods and I haven't had one in 3.5 years until now?!?!)!<

>!She said she felt kinda bad this morning, but it's like, idk, then do anything else about it? Like, I don't want to stop her from doing things, but living with someone who knows I don't have a lot of options, and who sort of doesn't do a lot and then goes out and has fun whenever they want while I have to stay at home is.... honestly just hurtful at this point. It's hard to imagine she doesn't know that it's happening or that its hurtful because she does, and it's weird because she's not a mean or hurtful person at all. She's not trying to be hurtful, it's just really tone deaf.!<

>!I don't know how to stop "letting it happen" because I'm not making money, I don't have a car, I don't have family support, and I'm slowly trying to figure out how to get out of this situation, but I just...don't know how. I have a lot of psychiatric issues myself that are ... manageable enough sometimes, but it's just making it worse and worse lately because I already feel like, exhausted by the fact that I have to walk everywhere or bus or plan the hours of time it's going to take or physicality to get around, I already feel excluded and alone in so many ways, but I'm also a grown ass adult and I don't know how to help myself and it feels infantilizing and fucked up. It keeps compounding on the same traumas and wounds about money and abandonment and everything else that I'm worried it will just get worse and worse until I just don't have any self-esteem left. I'm so tired of my life being so fucking isolating and hard and weird and watching everyone else's life happen while mine doesn't.!<

>!I used to have dreams and now even dreaming of doing basic shit everyone else does (and has been doing much younger than me) is just painful.!<

Whoa has anyone ever had a period about 5 weeks after surgery? I haven't menstruated in years since being on T and have been having a lot of mood swings and had a VERY bad one the other night and was crying uncontrollably and it seemed really extra, and then today I had a light (?) period ...???? I'm shocked to be honest, and am def gonna reach out to my Dr as my t levels have always been normal but I'm wondering if this is a Thing That Happens after top surgery????

Marked NSFW to prevent others from seeing this necessarily.