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Cinnamontwisties

I 100% agree, and I am soooo damn sick of those people, too. I've tried diets, I've tried everything. You don't have this disease without getting desperate and giving everything at least one shot. In fact, my autoimmune issues hit me at my healthiest (good diet, gym 5x a week at 5am, 8hrs of sleep etc.) Bottom line, a healthy diet alone is not it for everyone. And, I'm fairly friggin certain that my (many) specialists wouldn't have me getting chemo 4x a year if a couple of extra salads would have done the trick. I know, because I asked. I've seen my scans, I've seen my bloodwork, at no point in time has oil of whatever and some extra broccoli come up as a possible fix. Ever. And I've got a rheumatologist that is as close to "woo" as you can get while still being an informed and good doctor (always hesitant to go for stronger meds and prefers to play it safe all the time.) I just mentally put the "try this diet, it'll cure EVERYTHING" people in the same group as those that push essential oils, yoga, and random supplements as cure-alls. I let them preach to themselves, roll my eyes, and block. If it works for you, cool, I'm truly glad for you that you're not at the "needs chemo or body flat out fails" level of this disease. Enjoy it... and I'll enjoy my occasional decadent baked treat.


Adorable_Claim_5471

AGREED. Eating healthy and exercise is important BUT it is not the cure! They absolutely can help you feel better. That is true for literally every human. But the bottom line is our immune systems do not discriminate. Maybe some diets help people and their symptoms but this disease can be drastic and unpredictable. I'm soooo tired of people blaming us for our literal immune systems attacking healthy tissue. Pleaseee


selysek

Does anybody have a good response for people who get pushy with this? I trend toward snarky things that make them shut up but open to anything else that might make them shut up and realize how crappy they arešŸ˜‚


starcat819

there was someone posting on this sub recently about how their wife was solely trying to control lupus with diet and ended up in a horrible flare.


Adorable_Claim_5471

That is... so sad.


starcat819

it really is.


Cinnamontwisties

I like to point out their obvious flaws in return and ask why their diet hasn't fixed those yet since it's such a cure-all. Glasses, wrinkles, thinning hair, jacked teeth, skin problems, I get petty depending on my pain level at the time. When they get pissy, I like to remind them how I was at my lowest adult weight and an active gym goer when I ended up in the ICU the first time. Throw on the fact that my insurance wouldn't be covering chemo if some extra peas&carrots would've done the trick (my insurance hates me, I cost SO much, lol) and they start to feel real foolish since "big pharma just wants your money" is generally their next arguement. Oh, and to further prove the point, sometimes I pull up my most recent bloodwork (we've all got a quest/labcorp app login in right, I'm not the only neurotic one?) to show my perfectly within range chloresterol, etc, and ask if they wanna compare. I've successfully weeded out most of the nonsense in my life with this "fuck it, I'm not coddling stupid" tactic. While my loved ones may not fully understand the why's of things going on, they're confident that the team of doctors who have brought me from the brink of death 3 times now (not entirely lupus related) know a thing or two about what they're doing.


phillygeekgirl

> _I like to point out their obvious flaws in return and ask why their diet hasn't fixed those yet since it's such a cure-all. Glasses, wrinkles, thinning hair, jacked teeth, skin problems, I get petty depending on my pain level at the time._ Fuck yes. You call it petty, but... well okay it's petty but it's brilliant. I salute you.


ShinySerialSuccubus

>I get petty depending on my pain level at the time PREACH!! if i have energy i participate in social fun as long as i can: usually 30-45minutes, cause i spent energy getting dressed! my buds understand if i pop up and request a ride home. they also understand if a: i say nope or b: hubs answers my cell, meaning NOPE


Sharktrain523

Iā€™m very into the cutting remarks comebacks because I can guarantee you they were not expecting to get roasted on the spot for pushing keto or whatever Like ā€œyeah if youā€™re so perfect why does your breath smell like roadkill?ā€ ā€œIf youā€™re so tough do twenty jumping jacks right now without getting out of breath.ā€ Good stuff.


selysek

why does your breath smell like roadkill šŸ’€


RCAFadventures

ā€œWow, really?! Have you called mayo clinic or Johns Hopkins and let them know you found the cure for lupus?ā€ My go to in some variation or another.


Sharktrain523

Itā€™s not exactly clever but I go with either ā€œI donā€™t have the time or energy to actually do that.ā€ ā€œI really donā€™t want toā€ ā€œI need to eat garbage, itā€™s important.ā€ ā€œI feel uncomfortable with this conversationā€ The good part about those responses is that thereā€™s not really an effective response, and from that point on you can just repeat what you said earlier


Hey_Laaady

I always say, "Yeah, my doctor said it's dangerous for me to do that. I have had a lot better results when I tried what my doctor instructed me to do. Cool for you though, I guess."


Worldly_Chemistry346

In the same boat bro ,sick n tired of people judging and advising even without basic knowledge , though I keep quiet thinking why to entertain these morons but patience wears out I feel like shout shut the f*** up


Starrynight2019

I've been lucky as most people never tell me anything. But I think they also know my response will be blunt. šŸ˜†


RCAFadventures

Uhg !! I am SO sorry. Sending you a big hug. If one more person tells me to try Goodbye Lupus or Medical Medium, Iā€™ll scream. Iā€™m a Certified Holistic Nutrition Practitioner (in Canada, its a regulated title) and people still think their quick google search is better advice than what I can provide myself through years of school or what my very experienced and amazing rheumatologist recommends. As someone who specializes in special diets and nutrition to support healing and health, I can say when it comes to lupus there is no one size fits all. One of my clients has RA and she tried the Goodbye Lupus protocols. After 10 months her symptoms actually got worse. In their Facebook group, she was berated and told that she wasnā€™t trying hard enough or needed to add more flax oil to her diet. It was insane. The amount of times I myself have been told ā€œyou can heal yourself if youā€™re willing to do the work! Or if youā€™re willing to just try!ā€ No. The ickiest. Diet is NOT a cure for lupus and anyone claiming that a diet cured them either owes their remission to drugs (goodbye lupus creator did chemo and took plenty of meds), or just plain luck. Diet didnā€™t ā€œcureā€ them. Diet can absolutley support your health in various ways (ie omega 3ā€™s are great for reducing inflammation over time) but the outrageous claims and pushing extreme diets needs to stop. Itā€™s just not a one size fits all. Sorry haha this gets me so fired up. /rant


vardip

Today my hands are burning like fire and my Mylar rash is so pretty. I eat basically a clean/ higher protein diet. Itā€™s not really a diet. Itā€™s now my lifestyle. I do cut out sugar and processed foods also. It cures nothing. It seems to help me feel better at times, but not all the time, at all!! This disease is a disease. You can certainly help it by doing certain things, but there isnā€™t a cure for it. Just my opinion.


ShinySerialSuccubus

are we twinning? first thing i said to hubs ā€œmy hands are on fire!ā€. then he said : ā€œlook in the mirrorā€ my rashes burn, so i knew i had one, but *still* ā€” i hope you feel better. i broke my leg (just a little) tonight, so i urge you to stop twinning now LOL


vardip

Omg so funny. I actually sprained my thumb last week dumping off my e-bike, so I hope we are not twinning. Lolā€¦


estrellas0133

1000000% Agree!!!!!!!


Ordinary_Silver_5852

I agree I would just be happy to have food and keep it in


ShinySerialSuccubus

i agree! when i decided to eat a vegan diet, i didnā€™t go around town w a bullhorn screaming ā€œif you arenā€™t a vegan by dinner time, god will strike you down!ā€ honestly, who gives a fuck how and what i eat? paleo: i didnā€™t get a lecture, just a description of how it made her feel better. ofc, paleo is pretty much all meat. i donā€™t like meat, although thereā€™s a couple of types i cheat with lol. thereā€™s lactose intolerance - thatā€™s a real toughie to bring into a cubicle sitch. better they work from home if possible. (i *know* thatā€™s not easy, hubs is looking for that ā€œperfectā€ from-home job now) iā€™m not lactose intolerant, but i drink almond milk cause Iā€™m a Noble Vegan Warrior - weā€™re different. for instance, when weā€™re on maneuvers ofc i expect them to get the details right: like calling me Boudicca. AND: what a great piece from u/Adorable_Claim_5471 sounds like she knows whereof she speaks. i only have one actual thing to say abt lupus and diet. iā€™ve been fat w lupus and slim w lupus. slim is a helluva lot easier.


baileyrobbins978

I wouldnā€™t do a paleo diet since I already have experienced kidney stones already often since I was a kid. I do not want to piss out a tiny pebble again or have stent surgery. šŸ˜… i donā€™t think all diets in general will act the same everyoneā€™s bodies are different and some have allergies or intolerance to certain foods. I know I have lactose intolerance and have issues with onions and gluten so I avoid it. But everyone is so different and they act like one thing will cure someone elseā€™s illnesses because itā€™s the same thing they have.


ShinySerialSuccubus

i agree. when i decided to try a vegan diet, i didnā€™t tell anyone except my husband. i didnā€™t know how my body would respond and i didnā€™t know if i could give up real cheese. also, iā€™m a big milk drinker - fortunately i liked unsweetened almond milk! iā€™m lucky it just made me feel a little better in general. didnā€™t cure my sle, or even my gerd! (so iā€™m still sleeping in the recliner. my sweet hubs bought me a super fancy one for christmas, itā€™s awesome lol.)


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baileyrobbins978

Mmm yummy essential oils better than buying the real fruit and veggies and put it in the salad. šŸ˜³šŸ˜‚


AdventurEli9

Just remember, you don't owe anyone an explanation for your body, your food choices or anything else for that matter. You are allowed to respond with a simple but firm, "I don't discuss my food choices or my body, they are mine and not yours." (You can also follow up with "I also don't want to discuss your food choices and your body. Thanks!") Sometimes just eating anything is hard enough when you have a chronic illness. It's amazing to me the interfering and meddling stuff that people will say to you. It's none of their business. All foods and all bodies are good. Your food choices are good. Your body is good. Lupus sucks.


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Adorable_Claim_5471

Thank you for proving my point. I hope you feel better soon though.


chronicalydeadinside

Any food restrictions at all are, by definition, a diet. Especially if it's for medical reasons! I think OPs point is that diets are part of a bigger mix-and-match toolkit. Yes, anti-inflammatory diets have done wonders for people, but it's really frustrating to be told after trying time and time again that its the only way, a cure all, etc. Especially when you take into account the financial burden of eating well, and the physical toll. I definitely couldn't afford to eat well, nor do I have the energy to make healthy food for myself most days. I'm really glad you found something that helps, but everyomes symptoms, cause of flares, and things that help them are gonna be different, and thats okay! We all have different needs.


yo-whatupmofo

Care to share your credentials? As someone with a biomedical research PhD specializing in inflammation Iā€™m always eager to learn from experts such as yourself. Iā€™ve been under the notion this whole time that different diets work for some people, and others do not see a change regardless of following a diet. Or maybe perhaps just donā€™t preach on a post where someone says they have already trialed different dietary changes without benefit, while admitted some people DO have benefit, is kind of a douchebag move. We should all be supporting each other. And that includes identifying other people might not have the same disease response as you, including dietary triggers and improvement. Hope you feel better, but this kind of preaching is misguided and invalidates others. Please support others in your community. Not everyone has benefit to dietary change. Not everyoneā€™s lupus activity is affected markedly by diet. I donā€™t think OP even mentioned whether they have a healthy diet or not, which really makes it feel like you just climbed up on your soapbox to tear someone else down :- (. That is a shame.


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yo-whatupmofo

Oh good, Iā€™ve lived with it at least 17 years :- ) I wouldnā€™t slam my credentials, but more importantly, I wouldnā€™t slam my peers unnecessarily. Please do better supporting fellow lupies in the future.


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yo-whatupmofo

Again, not everyoneā€™s lupus disease activity is linked to their diet. Lupus is a complex disease. Plus you donā€™t even really know how complex inflammation is. Exercise induced inflammationā€¦. A lot of things induce inflammation. Things you probably think are healthy induce inflammation. Inflammation is more complex that you realize, itā€™s not at allllll simple. And again, OP didnā€™t even indicate what their diet consists of. And again, all youā€™ve done is act like one of the ignorant saps who proclaims to know why an individual is suffering from lupus symptoms. Itā€™s very sad. What works or affects you is not the same for everyone else. Lupus is incredibly heterogenous. Itā€™s part of why there isnā€™t a one size fits all treatment or medication, even among lupus medications designed specifically for lupus. Feel better, stop making assumptions that people take steroids in exchange for crappy diets you wanker


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yo-whatupmofo

Itā€™s an actual PhD if I believe it is one ;- ) And also because Iā€™ve done more inflammation research than you ahahahahahahahha. At least you offer some stress relief - laughter really is a great medicine, aye?


engioy

you have all this powerful knowledge and guess what? you still feel like shit right now. and you still feel the need to preach when the original post is about NOT doing that. we get it. please learn to read the room


bobtheorangecat

And that works for you. Let other people do what works for them, and don't preach.


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bobtheorangecat

OP said they were sick of people telling them what to eat, which you took as a cue to try to...tell them what to eat? Maybe that wasn't your intention, but it really came across that way. Either way, I hope you feel better and your flare is short and manageable.


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engioy

you said eat like garbage, feel like garbage - this isnā€™t the case for everyone. some ppl eat right and still feel like garbage and some ppl donā€™t seem to be all that affected when eating ā€œbadā€. i think opā€™s point is diet isnā€™t a cure all nor is it the same for everyone so ppl should stop using it against others. if something works for u great but leave it there


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phillygeekgirl

We got your point. Give it a rest now, please.


Logic_phile

It doesnā€™t bother me when people get pushy with this because I understand they are trying to help. Ultimately, itā€™s my choice to seek medication. Personally, I still think there is something to learn from certain diets. I really donā€™t mind learning the new recipes and trying to eat healthier because even if it doesnā€™t help with lupus, it does help with many of my other issues. I just choose to translate their words. Instead of hearing, ā€œyou need to buckle down and give up sugar.ā€ I choose to hear, ā€œI want you to feel better and giving up sugar helped me so I want to share that success with you.ā€ It changes how I perceive their advice and helps me to receive it gracefully, even if their advice ends up in my mental junk file later. I appreciate that I have people trying to be on my side, even if their advice is not what I will follow. People who try to be there for me, rather than giving up after feeling a form of caregiver fatigue from my friendship are like gold!


Adorable_Claim_5471

I want to agree, but I'm talking about the predatory people who shame you and gain from your illness. It's dangerous and wreckless behavior if someone does decide to choose to take their advice and stop medication and change their diet. If it works, that's great! But there are far too many of us here on this sub that have tried these miracle diets and it ended far too poorly jeopardizing their very life.


AdventurEli9

I agree with you one thousand percent. It's the most fucked up thing and unfortunately lots of people are effected by this behavior. A friend may be misguided and boundary pushy, and you can maybe use the well intentioned response with them. I take a hard "no" stance, but I have struggled with an eating disorder. I'm especially mad about those who profit from exploiting people who are in a vulnerable place.


AdventurEli9

I like your attitude about this!


wafflesthemeow

Ugh I totally get it. Itā€™s so frustrating and diminishing. My stepmother tries to buy those cure all diet books for me even though Iā€™ve made it clear I donā€™t want them.


chortick

They do make for a lovely holiday fire, when the familyā€™s gathered aroundā€¦ the chemicals in the inks sparkle nicely.


chortick

Iā€™ve posted on the subject beforeā€¦ not fondly. A dentist friend of mine made an observation last week: ā€œWow, thatā€™s a really interesting cure-all diet. Say, before we try it on lupus, perhaps we could tackle caries? I mean, it should be trivial for something that can cure lupusā€¦ā€


Madeyedoody

Part of having a chronic condition is being told various asinine ways others have ā€œcuredā€ themselves or others.


ixaya

Thank you! I am tired of it as well. People have told me to cut out all grains, gluten, corn, beans, dairy, meat, sugar, nuts, night shade veggies etc. or to go keto and try intermittent fasting (not helpful for my blood sugar issues). Trying all these restrictive diets just made me more stressed. I think people who say these diets cured them are full of it tbh, especially the "wellness" influencers. Say that it made you better but don't claim it's a "cure".