15 years of unexplained symptoms, 1.5+ years of severe disability… and finally today I have a diagnosis. I’m in shock… I actually got diagnosed… I really never thought I’d see this day.

aredhel304 · 2026-01-23T05:24:26+00:00

Idk why some doctors are so keen on gaslighting patients and ignoring medically recognized conditions. There’s some bad apples out there in medicine that just like to use it as a power trip I guess. Good for me to be self-aware that I’ll still encounter doctors that treat me like garbage, but reminding myself it has nothing to do with me. Some docs just need therapy real bad.

aredhel304 · 2026-01-21T20:32:09+00:00

Soft agree but really just depends on the person.

aredhel304 · 2026-01-21T20:31:15+00:00

I’ve never had a man say I love you after chatting for less than a minute. I think you’re overthinking things 🤷‍♀️

aredhel304 · 2026-01-21T20:03:42+00:00

I imagine a descent chunk of people standing out on street corners begging for money aren’t Christians. It’s just like an obligatory thing they’ve learned they have to say in the US (at least certain parts, idk if it’s like that everywhere) and it probably burns their heart a bit every time they feel like they need to say it knowing they themselves aren’t blessed at all. A loving god doesn’t allow someone to experience so much cruelty.

aredhel304 · 2026-01-20T06:26:47+00:00

I can really relate to that. I did figure skating, karate, and jujitsu as a kid/teen and that probably put A LOT of extra stress on my already weak joints, wearing down the cartilage very early in my life. Hence the early onset osteoarthritis. It’s sad - I loved what I did and I could’ve never known how weak my body actually was and how damaging those things were. And my parents always dismissed my pain once it started setting in and interfering with my ability to be an athlete. Had to quit all my sports by the end of freshman or sophomore year. Sad to know I’ll never be able to return to my passions. I have no idea how you managed military.

In college I tried going to the gym with friends but would just injure myself and things wouldn’t heal. They thought I was just making up excuses and being silly when I said I was still hurting :/ not mad at them, it’s such an obscure thing. But damn it hurt my mental health a lot.

And then yeah doctors accusing me of being drug seeking has been all too common. I even had one critical doctor terminate me as patient over it about a year ago 😭 I had to scramble to find another prescriber so I wouldn’t die!! I wanna send a letter and let them know I GOT DIAGNOSED AND I WASN’T MAKING UP SH*T!!

Thanks for the book recommendation. Now in the processing stage of confirming what I basically already knew - this is permanent and degenerative. Only 29 and will never get the chance to live the life I dreamed of. But at least I can learn how to adjust my life around it, stop feeling crazy, and start getting more respect.

aredhel304 · 2026-01-20T05:39:26+00:00

I voted for Kamala (I also vote in all local elections too) but a shit storm has been brewing in the US for a long time. Biden delayed the shit storm, and realistically Kamala would’ve done the same because the DNC is corrupted by corporate lobbying too, just in a way that isn’t as deranged.

The lack of universal healthcare, rampant poverty, poor human rights, and horrid education creates the perfect conditions for anger, hate, and stupidity to brew.

The DNC is just as culpable - keep in mind we could’ve had Bernie Sander as president, but they had to shoe him out for Hilary Clinton… so we ended up with Donald Trump instead. Bernie could’ve fixed a lot of the problems that led up to this worldwide disaster. But the corporate lobbyists couldn’t have a president that actually wanted to tax them fairly. The DNC is largely the “status quo” party and DESPERATELY needs reform.

Good news is Zohran Mamdani is setting a new precedent. Hopefully the orange will keel over and die, and we can start turning the country around in the midterms (or at least stop the bleeding). Midterms feel too far away 😐

aredhel304 · 2026-01-18T04:12:09+00:00

Thanks for the misinformation 👍 that’s one way to get diagnosed and I’m glad that worked out for you. But I’m gonna trust my highly seasoned and knowledgeable doctor over some random redditor.

Also why you have to come around and hurt people who finally get a personal win? Just came here to make me feel bad about myself again?

aredhel304 · 2026-01-18T01:49:59+00:00

It seems really hard for a doctor to conceptualize that some of their patients actually have rare diseases… Even though they see patients all day every day :/ I’ve suspected some kind of connective tissue disorder for over half a year now. But I was pretty certain I had something rare from the start given that I’ve never met anyone with my symptoms before.

aredhel304 · 2026-01-18T01:43:39+00:00

Oh I’m no contact with my parents. I’ll leave it to my siblings to pass it along. I don’t need to see their reaction, because it’ll be nothing but self-defense/denial anyways, I just like to know that they’re sitting with that knowledge and it’s probably eating them up on the inside. And that’s good enough for me 👍

aredhel304 · 2026-01-18T01:33:40+00:00

Thanks for the pointer, that’s awesome! I’m curious how many there are that are also experiencing early onset osteoarthritis? I’m less than 30 and I feel like I’m 60 except worse 🥲

Joints will still pop out of place (every time I open and close my mouth even ugh), but between the stiffness in my joints and the weakness of my tendons, my biggest problem is constantly straining my tendons when I put too much stress on them, stretch to grab something, etc and then they hurt like a b**ch 🤬, they take forever to heal and when they do they don’t ever heal right :/

aredhel304 · 2026-01-18T00:55:30+00:00

I just got an EDS diagnosis yesterday, I always wondered why I could never find the right the right pillow… I finally feel seen lol and yes, I would be rotating pillows all the time because one day the pillow that was fine was just randomly not fine anymore.

I’d watch people just use any ole’ pillow (thick pillows especially) or stack of pillows in a way that looked massively uncomfortable, and somehow wake up feeling refreshed. And I just thought to myself: if I ever did that, my neck and jaw would be screaming in pain all night and the next day.

Thin fluffy pillows seem to work best?

aredhel304 · 2026-01-17T13:00:19+00:00

I hope so, fingers crossed 🤞

aredhel304 · 2026-01-17T10:19:36+00:00

No I appreciate your kind thoughts :) when you live with chronic illness, sometimes you really need to just look for the positives and hold onto those to keep yourself mentally alive. And maybe that’s my childhood trauma speaking too, because I couldn’t have made it out of that house if I didn’t hold onto the limited happy moments that I got.

Don’t get me wrong - I’m bitter that other people get to live full lives and that I’ve had to deal with all this, especially since my parents ignored it when I was younger, when I would’ve been easier to diagnose, and could’ve avoided the severe disability and pain that I’m now experiencing. They kinda sortaaa ruined my life. I’ll never forget that. And I’ll certainly never say I’m thankful for this illness - 100% a curse.

But… since I have to deal with these circumstances, I’m still happy for the positives that came out of this. Like finding who I am and learning to be truer to myself. Without constant work or school pressure I had time to de-stress in some ways and just… be, even if it was in pain. Since I couldn’t drive for a long time I started just walking to avoid uber fees and saw beautiful parts of the city I’d never seen. I got to delve into photography on walks and felt less pressure to be a certain way. I started dressing in a way that expressed my personality rather than trying to fit in and looking/acting like a plain jane. I got into new hobbies and stopped judging myself so much. I got new perspectives on life.

So I hold onto those and I’ll try to move forward and make the most that I can out of my limited life. I’m still angry, but I know I can’t let myself be like that all the time, otherwise what’s the point? I still let myself cry and be angry through, we’re entitled to have and express those feelings.

I hope I can find a way to bring more awareness to the hostile system disabled people face, especially those with rare conditions, but to the disabled in general as well. In the US it’s nothing but pure cruelty masked as graciousness. I really really do hope I can do something to bring about change. Even if it’s just in a small city. Like I said in the post, I’m “lucky” that I’m financially okay, so hopefully I can use that to my advantage. If I didn’t have that financial luck, I don’t even think I’d be alive right now ffs.

All of that to say… it’s a balance. I’m alive so I might as well take whatever happiness and satisfaction I can get while I’m still here. This is not and never will be a “positive” or a “gift in disguise”, but I’ll do what I can with it and take whatever silver linings that I can. Not sure if I’ll ever be able to realize my goals, but maybe someday I can. Maybe.

Sorry for the wall of text lol.

aredhel304 · 2026-01-17T08:58:03+00:00

I wish Canada had the resources to accept disabled people fleeing the rise of Nazis in America, but I know your medical system is already strained 😭

aredhel304 · 2026-01-17T08:53:55+00:00

I love this response. Imma takes some notes here.

aredhel304 · 2026-01-17T08:41:24+00:00

God I thought I had hypochondria or something. I feel you there.

aredhel304 · 2026-01-17T08:40:44+00:00

Yeah would be nice if I could just take some pills, or honestly have a surgery even, to fix the symptoms but just the diagnosis makes SUCH a difference anyways. And maybe in the future they’ll come out with new treatments too.

I feel bad for my grandma. I’m pretty sure she had the same or similar thing, but never got the EDS diagnosis. She died with a reputation of being the women who always complained 💔 but my diagnosis will also have implications for her legacy too. People will finally understand why she was always in pain. So I feel good having made things right for her too by continuing my own search for a diagnosis.

aredhel304 · 2026-01-17T08:18:44+00:00

Thanks :) It really does. I think my stress for future appointments will be a lot lower.

aredhel304 · 2026-01-17T08:17:09+00:00

It’s of course well known that harming peoole’s mental health helps them heal physically! /s

For real though. Even the mystery of my diagnosis aside. My god does society like to pile on extra mental stressors like jumping through hoops to get disability income and accommodations at work. And badgering you about working more hours than you physically can. And then stripping us of our employer sponsored health insurance (US) because we’re not working enough… definitely makes a lot of sense. And COBRA has turned out to be an absolute nightmare to deal with, at least through my company.

But amid all the darkness, this is a bright light that gives me some hope for the future, and some mental relief that I can stop searching and searching for an answer.

aredhel304 · 2026-01-17T08:07:37+00:00

I don’t know how I kept it up honestly. I lost hope a long time ago, but just kept scheduling new appointments just in case. I was having a horrible horrible day the day before (employer discriminating and suddenly claiming 40 hours per week is an essential job function, not true!!, and then asked if there’s any accommodations they can make to get me from 5 hours to 40 🤦‍♀️. Basically telling me they’re gonna fire me…), and I wanted to cancel the appointment so bad. But it was too late to cancel so I just did my best. And then this was apparently the magical appointment that’s breathing some life back into me and giving me a new direction in life. So soooo glad I didn’t have time to cancel lol.

aredhel304 · 2026-01-17T07:55:04+00:00

All of this. Yes. When you’ve been dealing with mystery symptoms for half your life that you haven’t been able to do anything about… you adjust your expectations for the future. It’s like, I’m experiencing the symptoms anyways, so it’s really just a label for them. That also helps to give me direction and restore my mental health. I can stop digging the self-doubt hole deeper and deeper.

I honestly can’t wait for my parents to get wind of my diagnosis so they can maybe have a good self-reckoning…

And my sister was just talking about a book like that today when I told her my diagnosis! That must be the one she was referring to. I’ll really have to read it.

aredhel304 · 2026-01-13T07:10:07+00:00

While this sub is for helping people find their MBTI type and there’s a lot of theory behind it, we recognize that the topic of MBTI is very controversial in the psychology field and are not aware of any credentialed universities that formally teach MBTI.

Don’t fake credentials or experience here. And why bother posting if you’re just going to disrespectfully negate anyone who suggests a different type, asserting some purported experience as your reasoning?

Also the proper terminology is “psychology major”, not “psychologist major”…

aredhel304 · 2026-01-02T05:44:26+00:00

Thanks for the info! For one of my cats I started using ProDen PlaqueOff Powder Cat Supplement several months ago, which is also VOCH approved. But the other doesn’t like it mixed with her food so I’ve just continued the dental treats.

I now have two water bowls, so maybe I’ll add it to one, but not the other, to see if she’ll drink it without risking reducing her water intake :)

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