u/alexcubeddd

Hi ana-buddies :)

So, I was diagnosed with lupus in 2015 (for a second time-- the first being in Florida in 2013 so I had to start from scratch here). It's well documented, from my myChart listing it as one of my health conditions, on top of YEARS of bloodwork with anti-smith and anti-ccp antibodies coming up positive (so SLE & RA). I've always been a frequent flyer at the doctor; not because i want to, obviously.

But I found out the other day that my husband told our stepson that I just "self diagnose" and that I'm not really sick.

This is a man who claims to be Christian, is incredibly conservative, and literally thinks most of medicine/big pharma is a scam. His views on medicine make me sick. (***he was not like this when we met OR bred). The man has never, in a decade, taken the time to even Google what lupus is (or one of the 10 other conditions I've got). He won't touch any books i buy for him, read any articles, listen to any podcasts... so he LITERALLY does not understand what I'm going through in the slightest. And with that comes a complete lack of empathy, unrealistic expectations, and constant fighting and disappointment on both ends.

My question is... has anyone else had a spouse who was like, in denial about your condition(s)?

I dont know what to do at this point -- going to PT twice a week and living at my ortho office is a GIANT burden to him, nevermind when I'm hospitalized and interrupt his work life. I am a burden. That is VERY clear. Even if he doesn't mean it maliciously, the ignorance is detrimental.

How do I get this man to open his eyes, or even want to? Do i? Should i just take my kids and run away to Sweden or?

Haaaaalllllpppp 😭

Hi! I was diagnosed with SLE/fibro when I was 21. Since then, I've developed endometriosis, Rheumatoid arthritis (double dipping, lucky me!), ehlers danlos, bilateral sciatica, migraines, inappropriate sinus tachycardia, scoliosis, a peptic ulcer, and am thiiis close to getting that hyperthyroidism diagnosis. I also have some kind of musculoskeletal issue that causes my bones to break *very* easily, and frequently. At least twice a year.

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I've gone through plaquenal (can't take because it was making me go blind, fast), gabapentin, lamotrigine, NSAIDs to the point of puking, surgeries, physical therapy, topical treatments, short term t3's, steroids (oral steroids are AWFUL to my body&brain), OT, blood transfusions, and am trying to see if my new ortho will give me a steroid injection soon.

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My question is, how do you guys with chronic pain conditions, or lupus in particular, get doctors to take you seriously and actually help you? I get treated like a drug seeker even when I go in to my doctor for a broken rib or wrist. I'm a 32 year old female with three kids -- I don't look like a junkie or anything like that. So why do I constantly get treated like one, despite the laundry list of conditions and treatments I've endured? Has anyone else had this issue and found a way to overcome it?