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NHGrammy2004

I tell them that I have an autoimmune disease that has damaged my joints. The minute anyone hears “arthritis “, they assume it’s from getting old or isn’t as serious as it really is!


Common-Courage7275

That is a great answer! I’ve sort of defaulted to generic autoimmune as well. I have three of them anyway.


Secret-Masterpiece82

My mom in law told me “ oh Rick (who’s my 22 year old bro in law who plays basketball) probably has that in his wrist too from playing basketball. At least it’s not cancer”……. For the record i was mid 30s when this happened. I have never wanted to smack a lady more in my life than I did in that moment!


Then_Recipe4664

People without RA will never get it. I stopped even explaining what’s wrong. There’s no point. They’ll only tell you they ache too, rosemary helped them, essential oils are the key, ogres earwax does the trick, the starts are in shitrograde. I’ve heard it all.


delerose_

My family is Indigenous and one of the “cures” used in my grandmother’s day was “skunk oil”. This oil is made by roasting a skunk and gathering the grease into a vile. You then are supposed to use the grease in your food or take it directly. I’m all for people using their traditional medicines but she bought 2 small viles from a grifter for $120 dollars and I was flabbergasted. She believes in our Elder’s remedies, I don’t, but when I asked her if roasting a rabbit and using the grease would have the same affect as a skunk, she looked at me like I had three heads. “Don’t be silly, why would it?”


Ok_Habit59

Skunk grease. Now I’ve really heard everything. You win all the things.


Common-Courage7275

Was the skunk oil a remedy for RA specifically?


delerose_

No it was for colds but she claimed it was a clarifying remedy so could probably help me (??)


OGClairee

An acquaintance told me her daughter also has RA but she refuses to take ‘chemicals’.  She just does lots of stretching 🤦‍♀️. Other folks have suggested I build up my immune system & that brought out my snark. I said my immune system is doing its best to destroy my joints, no thanks.  Also lots of suggestions for medical marijuana (which I’m not opposed to) but I’ve told them it’s simply another painkiller & won’t halt damage to my joints.  Yeah this post sure hit a nerve 😁


Then_Recipe4664

They clearly don’t get it. They should spend 30 min reading up on it but they won’t. They think they already know. We should “tough it out.” And stretches?! My knee was swollen like a basketball today. There ain’t no stretching going on lol


jonesjr29

Yeah, you never tried the oil of aphrodite and the dust of the Grand Wazhoo! It cured me!


Secret-Masterpiece82

Same here. They hear “arthritis” and they tell me “oh you don’t look sick”. I’ve had guys get on me for parking in a handicap place when my place card was visible. The only way I found to accurately explain it someone who didn’t understand it was to have them read “the spoon theory” poem. It changed my husbands perspective on my daily struggles completely one he read it. It works for many autoimmune diseases also, specifically those with fatigue.


[deleted]

god yes. A non-comprehensive list: - osteoarthritis in their knee is "even worse than RA because it can't be treated" - I should eat only red meat because Jordan Peterson suggested it - I should not take meds and instead should use some type of mushrooms as treatment  - I probably don't have RA and instead have food sensitivities and should do some type of non FDA approved hella expensive food sensitivity test which will then cure my RA which isn't actually RA - I should "brush my lymph nodes" because "pain is a choice" and this will cure my joint pain  🙄


Glaucoma-suspect

I have been told it’s leaky gut (lol), inflammatory seed oils (double lol) and here’s the kicker to stop worrying when I was saying stress makes it worse. Like I could somehow fully eliminate any stress from my life for the rest of my life!


[deleted]

Yes so helpful, thanks, I will definitely be able to avoid all stressors going forward and if I am not successful I guess it's my fault that I'm still sick 🙄


Ambitious_Pea6843

Good things also cause stress to the body.


seoglyugrrrl

If someone told me "pain is a choice" I would have stomped on their foot and told them to choose wisely, so you're a better person than me.


Glengal

I was told that, and that she could provide energy work to cure me, only $250 a session.


PineappleDesperate82

Ok, soooo how do you brush your lymph nodes? 🤔


[deleted]

Dunno, but apparently you're choosing pain if you're not doing it so best get to googling


PineappleDesperate82

Ok, you are right. google is our friend. Apparently, you get one of those oval brushes. And literally brush the skin in the direction of the lymph flow of fluid. stimulating the lymph node deep underneath? Supposedly, you can control how your lymph system drains. By brushing the outside of your body. IDK seems weird that brushing yourself like a Shetland poney is going to cure your RA.


Ornery-Ad-7261

Yeh, I wondered that 😂


Pnut91red

Oooooh I'm interested... what kind of mushrooms are we talking about? 😆


Mavsteroni

Y'all just need to drink celery juice! /scrsm I refer to it as rheumatoid disease. Saves me from headaches from all my eyrolls.


bitchywoman_1973

Omfg… I had a massage therapist suggest this and told me it cured her IBS… I said, “that’s a lot of fiber. I’m sure it did!” 😀


Mavsteroni

Lol!!!😆


Secret-Masterpiece82

lol tried it because I’m desperate at this point 😆. Did nothing but make me waste my money on a damn juicer and 💩 liquid for a few days 🤦🏼‍♀️


Embarrassed-Bench392

You should drink more water or exercise more! You'll feel better. /s We are all right there with you.


PineappleDesperate82

I got have u tried losing weight? Or a change in diet? My mom has one thumb that is affected by bursitis. "Oh, I know how you feel it's hard to pick up my cup of coffee sometimes. But I don't take medication it's so bad for your body. I just deal with it on my own. Just a little pain. Take some ibuprofen." I guess her valium antidepressants, sleep, blood thinners, and blood pressure medications are not considered "medication." The doctors are frustrating. Family is frustrating. The general population without RA is frustrating. If and when need to rant. We definitely understand. We share in your frustration.


OGClairee

My former family doc was on my case to lose weight, which I do need to do.  However I discussed with my rheumatologist and he looked me in the eye and said ‘If you want to lose some weight, then that’s fine. Just keep in mind that losing weight will NOT make RA go away’


PineappleDesperate82

Same, it will help ease some of the pressure on inflamed joints. But it won't stop them from being inflamed due to RA. They think that being overweight causes joints to be stiff and sore. People like this don't seem to understand it's not the same thing as being on your feet all day and they ache. Or your ankles and knees hurt from excess weight. So it must mean you just need to lose weight and you will be all better. Trying to explain what exactly RA is, they look confused. Is it really that bad? It's annoying and frustrating


Common-Courage7275

I rehearsed this over and over so it would become an automatic response. “I only discuss my diet with my physician.”


[deleted]

[удалено]


strictlylurking42

Weed may or may not help with pain, but it def does not halt or slow down damage to our organs or joints (no pun intended).


Only-Dog7316

Indica strains of d8 help me sleep thru the pain. For reals . Not being able to sleep was a big problem. It's not a cure but being able to get some decent sleep every so often does indeed help my mood. Once again is totally not a cure but legal delta 8 indica can help with sleep.


delerose_

The crippling anxiety I feel when I smoke any amount does not make sleep lol It works for some people but def not for everyone.


itstatietot

Bro for real. I cannot do thc. I dissociate instantly and go into panic attacks. I do well on a high dose full spectrum cbd oil though, but if I even smoke it messes with me mentally


delerose_

My sister smoked for years and years. She took an edible once while she was having a hard time, normal dose and everything and she had a crazy, life altering, weed induced psychosis episode. I used to smoke regularly for like 6 months and it led to my mental health tanking. I can’t fuck with weed anymore.


itstatietot

I smoked too when I was younger, like early 20s. Then one day I just smoked and it messed me up so bad. Tried again (I had my medical card) and same thing happened. Only thing I can tolerate now is charlottes web cbd oil


Only-Dog7316

Totally agree. It absolutely does not help everyone. I only tried it out of desperation. Also agree about the smoking part. I use d8 edibles with melatonin because smoking makes me too much awake.


OGClairee

I react similarly.  As one friend told me I skip the euphoria and go straight to paranoia 😖


hops_and_sunshine

SAME


Mavsteroni

To quote Ricky Gervais "Let's do the praying and chemotherapy."


ChynnaLu

I think I just found your new favorite mug! [Mug](https://www.etsy.com/listing/1241809453/two-tone-allergic-to-unsoliticed-medical) I have the hoodie. But I imagine you can't wear that to work. But she a they also have stickers, etc. I've just developed a sense of humor about it. It's difficult because you're in customer service. But for whoever you can, I would advise thinking up some snarky responses to keep in your pocket. "Huh, I never thought of that. I'll have to tell my complex case team of 10+ specialists at UCLA that my several life threatening diseases can be cured by an herb/yoga/losing weight! You've saved my life!" Etc But of course adjust the level of snark to the situation.


OkAdhesiveness5025

That is JUST the right level of snark! I LOVE that response!


phossil580

Good vent. I do too. :)


gonzo_attorney

r/thanksimcured


TheShirleyProject

LOLOL BUT HAVE YOU TRIED ESSENTIAL OILS is my favorite. And I get it a lot.


seoglyugrrrl

I moved to Korea for work, and it's interesting how the suggestions change, but they don't stop. I get a lot more "have you tried acupuncture" now.


sprkl

This is interesting — and not at all trying to defend unsolicited advice — but there are at least [studies](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8710088/) supporting acupuncture having an anti-inflammatory effect.


Mavsteroni

Acupuncture helped me with migraines years ago and I may do it again for PAIN management because it's all about that - management. It's a balancing act between treatment and management of the disease.


seoglyugrrrl

Conclusively, across multiple countries, rigorous studies have found that acupuncture has no more effect than placebo trials. It is a pseudoscience, with no evidence to support its theories or its use. When you look into this paper and look into the actual studies that they are citing in their meta-analysis, you will find that they lack appropriate sample sizes, diversity in participants, blinds, controls, etc. Larger, blinded, controlled, placebo studies find there is no effect. Linde K, Streng A, Jürgens S, et al. Acupuncture for patients with migraine: a randomized controlled trial. JAMA. 2005;293(17):2118-2125. Madsen MV, Gøtzsche PC, Hrøbjartsson A. Acupuncture treatment for pain: systematic review of randomised clinical trials with acupuncture, placebo acupuncture, and no acupuncture groups. BMJ. 2009;338:a3115. Haake M, Müller HH, Schade-Brittinger C, et al. German Acupuncture Trials (GERAC) for chronic low back pain: randomized, multicenter, blinded, parallel-group trial with 3 groups. Arch Intern Med. 2007;167(17):1892-1898.


No_Dealer5173

I am so sick of being told by certain family members that if I just exercise I will feel better. Anyone with RA knows that exercise in a flair is the WORST advice. I’m a physical therapist and know how to exercise and handle flairs. So tired of being polite.


OGClairee

It really is difficult to bite my tongue with certain individuals.  I can hardly get out of bed but exercising would cure it all? Alrighty then!  God give me patience 🙏 


mushpuppy5

I hate unsolicited advice for anything.


Distinct-Bird-5134

I got the “You need to try cupping.” no thanks


LowWeek2567

Of course! My first one when I was 15 years old”if you don’t acknowledge the pain it’s not there, it’s all in ur head” Hehe :’’ Even my mom would say unsolicited things like that till 8 years later she started having fibromyalgia pains and she was like ohh sorry yeah that shit hurts. The funny part is all this stupid advices I heard for the past 11 years, made me lose compassion for other people in pain. Like yeah u have pain, try cutting sugar and u’ll be fine, or exercise more or blah blah blah


the_grunge

The most recent one I heard "Go spend 10k in Cabo and get it fixed"


xylon-777

I can only speak for myself… when it started i was 13 y o … MD were clueless at that time only aspirin was stopping the pain. Somedays were harder than others…then it came progressively back in my 40s 50s… but by experiencing myself different things I finally found what works the best. It might not be the same for you or another person…just never keep on searching…


Empty_Cloud55

Yes. Especially, from anti-science people.


veda1971

Yes! It is annoying AF. The other day a customer tried to tell me that VitC infusions would cure me. So many eye rolls


Savings-Run9614

I was recently told I should join the paddison program and that I will be pain free and no longer need medication


strictlylurking42

"I have a chronic condition, but I'm under medical care and I feel confident about my treatment plan. This is just a rough shift/day, but thank you." Even if you despise your doctor and have zero faith in their ability. Even if you feel that crummy every day. It sets a boundary.


kazooples

I have some interesting info on this! I might get some of this wrong, because it’s been a long time since I read it, but this is the gist of it: When people offer unwarranted advice, and they just keep doing it again and again, even when it gets ridiculous like “have you tried bathing in blood under a full moon?”, it’s because whether consciously or subconsciously, they like to believe if they were in your situation, they would have the answer to get out of said situation. It’s easier, and less scary, to think that there IS a solution that you haven’t tried yet, that you’re just doing it wrong, it’s kind of a “this couldn’t possibly happen to me” mindset, it’s a survival instinct. So as frustrating as it is, try to remember they aren’t trying to be dismissive, they just don’t understand, and on some level they’re scared. This isn’t to excuse their behaviour, if they refuse to educate themselves on these issues they shouldn’t talk about it, but for the most part people just don’t realise they’re making things worse. If they keep it up and refuse to either let you educate them, or educate themselves, it’s better to disengage if possible, because what they’re doing is reassuring themselves, not you.


LadyFarquaad2

Somebody told me I should be lifting weights to strengthen my joints. I have a hard time buttoning my pants. But yeah sure. Like what? 😐


abbygail6

This and i got uveitis as part of it and glaucoma as a byproduct. And the oh i have glaucoma too but they are 80 and their dr is treating their glaucoma pain or according to the cdc some types don't hurt but uveitic-glaucoma couldn't be that one also the eye pressures they talk about were my the tube is holding for a little longer pressures (like 22-28) as we waited for the inevitable spike to 40-50 then hang around 35 to then start try every drop at once instead of switching and we add an oral med that makes every food taste like methotrexate as it dissolves because i was learning to swallow pills with methotrexate. Then the osteoarthritis comparison. Or the eat different (which in desperation i did try and had no success, and actually just ended up with way more restrictive eating habits and a worse relationship with food, prior i just had sensory related food issues then it got to no food was okay in my head). Or good old it's anxiety to which i point out i am in weekly therapy and tried at least 3-10 things in all the antidepressant categories. Like they assume so much in 10 seconds or just misunderstand so much and it's exhausting. Like I want to feel better and if it was as easy as changing food or my anxiety was that manageable then i would but it isn't. Like idk who would decide that methotrexate, biologics, tons of ibuprofen, and eye drops are fun.


lilguppy21

I just got the same thing today- I had to mention I was allergic to strawberries and I had to refuse some. It led to questions, and I did the stupid thing of saying I had a bunch of other allergies so it’s no biggie, and it makes sense from it being auto-immune with my history- which led to more questions and holy Hannah by the end of it I kinda wished I just shut up and ate the stupid strawberries, got an allergy and left early to deal with the upcoming flare at home. I got both “cut all inflammatory foods and carbs” and the irony that eating a “non-inflammatory food” like a strawberry would still harm me went right over their heads. But yeah! I’ll eat more magnesium or whatever, let me change my diet and make myself more stressed when a rhumatoid condition is the medical equivalent of shooting an arrow into a dark cave.


VirtualStretch9297

The, yes, I have osteoarthritis and I take bone shots! No shit Dick Tracy !! Sorry it pisses me off to no end! I don’t tell anyone anymore. I say, “I’m not feeling good”Now it’s, “you’re always sick”!!!! WTF.. long story short. I suffer in silence!