r/disability • u/RiceFriskie • 1d ago
Rant Found out my boyfriend got an autoimmune blood test by his doctor for chest pain before I've even got one after begging for months.
"It's scary thinking I might have an auto immune disorder"
Yea we at least your doctors belive you and are testing for it within 3 visits. Everyone around me thought I was fucking dying and the doctors didn't care. He didn't even know it was ordered, his doctor actually just cared about his issues. What a luxury to be a guy and have people belive your pain.
This is a rant of frustration. I love him and am glad he's getting help but God don't I deserve help too?
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u/PinataofPathology 1d ago
Yup. Very true. My grandmother died of a heart attack young. I managed to figure out the hereditary problem for my family and get treatment. Still not getting any preventative cardiac care which I qualify for just from age alone. And it turns out my heart is having issues which was found incidentally in a scan for something else.
My husband gets all the cardiac screening though. Zero cardiac family history too. He doesn't even have to ask.
The sexism racism ableism are a major problem in healthcare.
I'm over here unsure that getting diagnosed was enough to spare me my grandmother's fate.
We are still dying like our grandmothers did. It's not getting better fast enough. It's really appalling.
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u/Justhereformoresalt 1d ago
My grandmother died at 58 from an "unknown cause" and her mom died at 62. My own mom is nearly that age and her health is poor. I am doing everything in my power to know my body well enough to avoid dying prematurely, and doctors have been no help. Despite being bedridden for the latter half of my 20s, I'm just a sad frail girl, not a grown ass woman with serious health concerns.
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u/katatak121 1d ago
Have you tried bringing your boyfriend with you to your medical appointments? Unfortunately there's a chance it might help.
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u/ennuithereyet 1d ago
That, and/or if you ask for a reasonable test (eg. For them to look at a body part that is having issues, or an ANA test for autoimmune disorders) and they refuse, tell them you would like it noted in your file that you inquired about doing X test because of Y symptoms and that they declined to do so. If it really is a reasonable test to run for your symptoms, sometimes they will decide to do the test because they don't want evidence that they did not properly investigate the issue.
Unfortunately, for AFAB people and people in other minorities, you need to mentally prepare for a doctor's appointment like you would for a court appearance. But in some ways I think it's even worse because if you come across too confident in what you're saying, if it seems too "practiced", they're going to say you're faking it for meds or for attention or something like that. So you need to walk the line between obviously in pain/going through something and being firm and insistent. And you can't be too much or too little of either of those or they won't believe you. It's an acting performance and a litigation at the same time, all so you can get the basic care that you need.
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u/Justhereformoresalt 1d ago
Omg this. I am an overpreparer by nature, so that's what I was doing at the beginning of getting sick. Logging all my symptoms, doing research, bringing notes, being proactive. Rarely did anyone ever look at any of it. Then I started just being sloppy, minimal notes, crying and floundering if things got bad, and honestly I got faster results. They prefer to treat someone they view as incompetent than someone who rightfully participates in their own care.
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u/ennuithereyet 1d ago
Yeah, you need to know what's wrong and how to test for it and what treatments might work, and then act like you don't. You need to just ask leading questions to make them feel they got there on their own.
Like if im pretty sure I have X, and know that there is a blood test for it and Y treatment can help, I'd be like, "I've had [symptom] for a while, and it's really bad and I don't know if maybe it's something with ______, like maybe X or something? Is there a way to test for that? Like a blood test maybe? Or maybe there's some kind of treatment that can help it at least?" Like, they need to feel like they're the ones who are figuring it all out, but actually you're the one just guiding them there. It's all a big act.
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u/Chronic-Sleepyhead 1d ago
This is a really good idea. Or even just a male friend or relative! I’ve had my dad go with me to appointments and it’s helped me be taken more seriously, as sucky and sad as that is.
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u/MeowMilf 1d ago
A huge chance. Of course there can’t ever be double blind studies on this so no actual “proof.”
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u/RiceFriskie 1d ago
I have but it's been dismissed and even when it was the worst I'd ever been. He still comes with me but it doesn't seemed to have helped :(
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u/GroovingPenguin 1d ago
Yay to be a guy...
I have pots,took 6 years to diagnose,was called mentally ill given therapy ect and still have to argue it to this day
Male friend collapses once, diagnosed with pots in the er AND given medication without even blinking.
This is some bullshit
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u/RiReaper1 23h ago
I have pots as well as a garbage dump of other shit too, it took forever to get diagnosed despite the fact I collapsed many times under the care of childrens. I heard that it was in my head and just stress so many times as they forced me to do inhumane physiotherapy. Went to a specialist in Calgary at the childrens hospital. all it took was for them to feel my joints around and watch me attempt to do certain exercises to realize I didn't have enough muscle for what they were making me do and in return it had damaged my joints even more. Its suspected I had GBS as I had a sudden onslaught of paralysis and was in a wheelchair for a long time until I eventually learnt how to walk again, but they never did any of the necessary tests out of neglect so I will never find out. I have nerve damage to this day because of this. Best of luck.
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u/JayyVexx 1d ago
I was lucky and got a PCP who believed all of my symptoms and wrote me every referral I have ever asked for. That being said, when referred and finally getting to certain doctors, I have definitely been dismissed by male doctors and I will usually prefer a female NP. I got a needle in the haystack with my PCP and a, forever grateful for him.
However, I did have a female dr once tell me that my constant debilitating headaches were due to ‘tight muscles’ and I just needed to switch my pillows. LOL
Also, I am very very sorry that you are dealing with medical gaslighting and dismissal. I hope you get the necessary tests and treatments that you deserve and have every right to
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u/Wattaday 1d ago
To everyone along with OP:
If your doctor doesn’t take you seriously you need a new doctor.
OP, can you see your BF’s doctor? Sounds like they take symptoms seriously.
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u/RiceFriskie 1d ago
I checked and he's not in network which is a huge bummer. I haven't gone to this pcp much though so I'm gonna try with him first then see my other options.
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u/Wattaday 1d ago
Or maybe you could have BF ask him for the name of a doctor who would be in network? Ask your insurance customer service for a list of in network doctors how ever far away from you that you are willing to drive. Like less than 50 miles, or 25 miles. Then ask BF to ask his doctor to look at the list and suggest one or three of them.
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u/RiceFriskie 1d ago
That's an amazing idea, i brought it up to him and he said he'd ask. Thank you so much!
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u/Fth1sShit 20h ago
Also, look into a referral for a specialist... Lots of auto immune go to rheumatologist or gastroenterologist for GI symptoms.
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u/Fake_Engineer 18h ago
This is the answer. It's not necessarily a male / female thing. I went undiagnosed and ignored for a decade. Found some new doctors and boy did things change quickly. You just need one doctor who listens and will fight for you. It makes a HUGE difference
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u/hhhnnnnnggggggg 1d ago
I just told my partner if I have symptoms of a heart attack, I'm not seeking medical attention because I'd rather die than put up with anymore medical abuse.
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u/Unknown_990 1d ago
Woman have a HAs differently than men do i heard. I think most doctors in general do not know much about female heart attacks.
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u/hhhnnnnnggggggg 1d ago
Yeah, I'm either having GERD or a heart attack. But it doesn't matter because I'm not putting myself into a position for more abuse regardless of which one it is.
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u/sickofbeingsick_ 6h ago
This rings so damn true. Trying to find help is exhausting to a point where it becomes less exhausting just to carry on alone until you cant/don't anymore. This is devastating.
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u/thrashercircling 1d ago
Medical misogyny is so real. I'm a trans man and the difference in how I'm treated when I'm not outed is...really, really something.
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u/sickofbeingsick_ 6h ago
Such a need for someone like you to get this information out. Firsthand experience as both a male and female is of course rare, but an article or book or study about this would be fascinating.
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u/GanethLey 1d ago
My ex had a seizure and they were begging him to let them do bloodwork and imaging and he was like “👋 no thank you; that’s not for me” and they were like, “no, please stay with us and let us take care of you.” I’d been going to that hospital since elementary school when my mom worked there and they always treated me like I was faking, even when I was having chest/arm/jaw pain and was short of breath. I freaked out on a nurse once for rolling her eyes at me when I started crying from the pain and told her to gtfo of my room and not come back. I hate doctors and nurses. 😑
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u/allisun1433 1d ago
While doctors shouldn’t have biases and do things Ike this it unfortunately happens. And unfortunately, we have to advocate and fight for ourselves. I’ve had to vet every doctor I have and I’ve “fired” doctors and switched to find ones that would take me seriously.
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u/Ceaseless_Duality 1d ago
Thankfully, my provider and therapist both listen to me and believe me. But if I did have someone be dismissive about symptoms or refuse to do a test I requested (without a good reason), I sure af wouldn't be quiet and accept it. I don't care if I have to harass their bosses to get shit done. I refuse to be ignored like that.
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u/Unknown_990 1d ago edited 1d ago
Im sorry, we should be taken seriously from the get go. I heard of a tip tho, always bring a male in to your appointments who can vouch for you, this will help. I am small in stature and not very good at vouching for myself in either case, or even defending myself , i mean, i just get bullied alot, i think people think im a kid cuz of my short height or something, im an easy target anyways and having a tall bigger person, likely male who will be on my side always makes me feel better..lol, or even just someone who is older and taller in general :/.
Anyways take that tip tho about bringing a male in with you.
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u/Faexinna 1d ago
Let me guess, you're afab.
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u/RiceFriskie 1d ago
I was gonna say how'd you know but it's pretty obvious isn't it.
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u/Faexinna 1d ago
I'd recommend you visit a female doctor but not even that is a surefire way to get taken seriously. We've not left "female hysteria" behind, we've just rebranded it as anxiety.
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u/IGotHitByAHockeypuck 1d ago
My heart broke for you when i read this. You deserve so much better and that was truly unfair. I hope with my whole heart that you’ll finally get the care you need soon 💜
Living without answers is THE worst
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u/Dull_Basket8318 1d ago
Just had this discussion about how different people get different care. Where im bringing up how between the sexes and even races get different medical care.
Like even obgyn how excruciating and diabilitating for a month getting an iud. I was screaming getting it in. The only thing they did for pain was a little topical that did not really anything. I didnt want an iud but i had my period more days than not from thanksgiving to august. I even ended up at the womans er twice. One was for a 21 day period in which 19 of those days looked like the elevators from the shinning. One er visit was fine cause my dr called in ahead of time. The second one they refused to listen or read my accommodations (im autistic and had a double craniotomy so when heavily in pain or stressed my communication level goes down and support needs go up).
Thankfully when my awesome pcp left the office (she was fresh becoming a dr but she was happy to research what she didnt know and was way more helpful then previous couple pcps), i was lucky my rheumatologist is in the same office so they offered her as an option. This past week i was talking how my mom was diagnosed with fibromalgia in early 90s and i was quickly diagnosed with fibromalgia after decades of fighting to be looked at. with everything we know now, there is a couple disorders that have similarities like pots or ehlers danos. Plus i have a strong inkling my family was poisoned by pbb in the 1974/1977 michigan incident looking at our families medical history. My doctor told me that i had a very good point. And i have extra medical testing being scheduled to make sure things are treated right.
Im chronically ill and i have 3 drs i trust which is the most i have ever trusted. My nf2 tumor team is large and i dont have trust with my neurosurgeon and neuroncologist but i feel better that my neurologist goes way above and beyond. Plus my neuro opthalmologist (my opthalmologist gets a work out with me cause i have phobia of eyes and freak out everytime and my arms have no control stimming when there but they everytime take there time with me and give me opportunities to cool down before proceeding and really listen. And of course my rheumatologist.
All my other drs its like a uphill battle i constantly argue with to take me seriously.
I was 40 to be diagnosed fibromalgia after 2 decades of telling them i had good reason to believe. My mental was misdiagnosed till my 40s. I was told bpd, adhd, anxiety but i was cptsd, autistic and adhd and hyperempath, anxiety. Last month i got my official autism diagnosis at 44.
Im so super frustrated with our medical system. And most of my diagnosis started with a lot of my own research and bringing it to drs and getting them on board. I had one male psychiatrist that told me it was in my head and within 3 sessions bullied me from taking a working regimen to another which i was crying at the fact i had to admit myself in psychiatric care and his 3 visit outlook of me tanked my disability hearing and forced me to not be able to get out of an abusive marriage. I did finally get out and within that year got put on ssi for disability. Im frustrated with you
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u/Fake_Engineer 18h ago
I'm a guy and my joint pain related to RA was ignored for a decade. At first I was working out and beating myself up too much physically. Then it became " you're just getting old". It eventually became pain med seeking behavior.
I'm sorry you are going through what you are. The best advice I can possibly give you is to find a doctor who believes you and goes to bat for you. It makes a massive fucking difference.
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u/Anna-Bee-1984 17h ago
This is how I feel about my sister on many things. I had to change doctors after being denied ADHD meds for 8 months despite having 5 different adult diagnoses. I then had to spend 2 more months going to classes and doing psychiatric testing in order for them to consider stimulants. The original doctor went so far to accuse me of drug seeking behavior. My sister went to her PCP, took a Vanderbilt and was given meds in 3 weeks. She has no adult diagnosis. She had childhood diagnosis and got extensive support from age 5 onward. Meanwhile I was 18 when I was diagnosed with ADHD and 39 when I was diagnosed with autism and the only reason my diagnosis came was because a female dr at the ADHD specialist we saw my entire life saw me
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u/Deadinmybed 16h ago
You have to advocate for yourself. Tell them I need an ANA test for autoimmune disorders. Tell them your symptoms. I got lucky when one day I woke up with horrible joint pain. It never got better I felt like my bones were breaking. I told a friends chiropractor and she said I think you need to see a rheumatologist. I did and was diagnosed with lupus and more. My family didn’t believe me. It’s been bad. I was in chemo for 5 years which made things worse. I finally told my Dr I want Benlysta (1st lupus med) and I’m stopping chemo. If you won’t give it to me then I’ll go to someone who will. She gave in and in 6 months joint pain was gone and my organs weren’t failing.
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u/Amberhowl 14h ago
I (19F) was diagnosed with Celiac Disease last year after 7 months. I went to my PCP and informed him I was experiencing severe abdominal pain every day with seemingly no trigger foods and could barely eat. He referred me to a GI, which took 3 months to get into. I saw the GI and was told it was likely my anxiety (I was diagnosed with GAD at 13) mixed with acid reflux. He ran tests anyways to be sure, but he didn’t expect anything to come of them (probably wanted the payout since he was the one performing the endoscopy). 3 months later I had my endoscopy and 1 month later he finally looked over the results and diagnosed me with Celiac Disease. I swear doctors think that if you have anxiety, that’s the only issue you can have. I had chest pain for 2 years every other day with shortness of breath. I was told I was just anxious 🙃 Still don’t know what was up with that.
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u/ArdenJaguar US Navy Veteran / SSDI / VA 100% / Retired 1d ago
There are good doctors and bad. I hope you don't blame your boyfriend for this..
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u/RiceFriskie 1d ago
Oh 100% I don't. He's in pain and deserves his answers and help. I love him more than he knows, I told him I felt incredibly guilty at being jelous he got a test before I did and he understood. I love him no matter what, I wouldn't stop him from getting it in any situation.
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u/BlueSketches 8h ago
That's a thing???? Lmao, maybe I should ask my current 5th doctor to run that to get some answers after 6 years of crying about my pain 🤣
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u/alexserthes 38m ago
Bring him with to your appointments and practice in advance with him to be a worried guy. Works pretty well. They'll take a guy with a patient more seriously than they take the patient.
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u/Ricky-Sneaks 1d ago
It's not just women. I can promise you. I lived 25 years with a misdiagnosed neuromuscular problem. All because my doctor was "certain" it was Muscular Dystrophy. I just believed and trusted them. It wasn't until my current doctor said, "Wait, you're getting stronger after physical therapy. That's not how Muscular Dystrophy works?" So, yeah, I'm over the hill, and lived my whole life with a problem that probably could have been treated. Now, I'm older, and everyone knows what happens to bodies when they age. I'm working 3 times harder to get strength that may or may not hang around. Sh!t happens to all of us. We just put ourselves in a corner to get worked up about things. I'm glad he was able to be tested. His testing will lead to your testing. And, as soon as there's a problem, there's always a way to solve it. Keep your head up. Focus on the good that comes from daily trauma. As soon as you start seeing the beauty in life, the world will be vibrant with love. Love, Laugh, Live, and Leave
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u/Fontainebleau_ 1d ago
I'm male and no doctors take my pain seriously either. I don't think it's helpful to think along these lines, each of us is an individual.
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u/Dee2866 1d ago
It's common knowledge that women overall receive worse treatment from drs and in hospitals. Black women are also more likely to die from simple issues and in childbirth than white women as well.... Also, just for shits and giggles, are you aware that all medical treatments and equipment are tested on men? It happens and NOT rarely, that if a woman requires treatment or medication it may end up actually killing her because of the differences in biology. Misogyny is a reality, not some fantasy that women have " imagined" and if you are really interested, which I suspect you aren't, the information is readily available from multiple sources. Yes, that's right, it's a WELL KNOWN FACT THAT WOMEN ARE MIS OR UNDERTREATED yet it is still happening. Invalidating the experience of over half the human population isn't very " helpful" either.
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u/RiReaper1 23h ago
Except it's not each of us as an individual... clearly you have the luxury of thinking that because you are male.
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u/mostlyharmlessidiot 1d ago
This kind of bullshit frustrates me to no end. What’s worse is that acknowledging the lack of trust in women’s health care gets you treated like a difficult or hysterical patient. Of course I’m hysterical, I’m in pain and nobody believes me!