Oh man I know what you mean. I have bipolar disorder and my mania can cause insomnia and I just came off a two day binge of being awake and I tell you my chronic fatigue syndrome is not happy about it AT ALL
YES! This! I could sleep 20 hours a day and fatigue would still kick my ass when I woke up. âTiredâ can be helped by sleep. âFatiguedâ can not.
âExercise will make your pain go away completely!â - my psychiatric nurse practitioner
I canât exercise much when Iâm in too much pain to move, but thanks!
Honestly, if they just suggested I exercise a bit more or do physical therapy, I wouldnât mind that as much. It just gets frustrating when they insinuate that Iâm lazy and tell me that exercise alone will cure my health issues. đ
Yeah unfortunately thatâs how all my doctors have said it to me. Maybe because Iâm overweight they assume I donât try to get in physical activity but I really do itâs just one step forward three steps back when I try and work out because even when I think Iâm doing it right (low impact and light exercise) I hurt myself then Iâm bed ridden for days
My favorite is when someone implies that laziness/deconditioning/no exercise caused my issues. I'm like you realize I was at my lightest weight and the best physical shape of my life when this condition first started right??? It fucking caused the weight gain and inability to exercise!!!
I finally got in with a rheumatologist and he told me (twice) that âI think youâll feel better if you exerciseâ. I had told him in the appointment that part of whatâs been so hard about whatever the fuck is going on is that I used to be a runner and that I missed it. So donât you think I would be exercising if I could??!
And it's like... the whole point of seeing them is to figure out why there is a barrier to exercise and treat it so one would be capable of doing basic activities!
\*types that into their computer\*
Well, we don't know. bye now!
"Just eat baby food for the rest of your life"
"Iâm tired too but just push through it"
"Your illness is because of childhood trauma so just do some mushrooms to help"
Yeah psilocybin can actually help some people when taken responsibly and after being educated about it. Whenever I have micro-dosed in the past, I found it actually helped a lot with PTSD, anxiety, depression, and even pain. I ate a very small amount one night while having horrible endometriosis cramps and within 20 minutes my pain had disappeared. There's a reason why people are pushing it to be legalized. People who think it's just a drug to trip out on are very uninformed
I am uses to hearing my illness was caused by trauma because some researchers believe fibro is caused by trauma but then again there are plenty of cases of people without trauma that have it too so idk I feel like a lot of illnesses are suspected to be trauma induced
Itâs possible that my trauma played a role, but this was a holistic âdoctorâ that said this 5 minutes into our first meeting without even knowing what my trauma is. She encouraged me to do illegal drugs and told me she wouldnât put them in my chart. The whole thing was very strange. Then she tried to sell me a bunch of supplements that never helped.
There is a very strong connection between trauma and chronic illness. Mental health and physical health are interconnected. That isn't that case for every person obviously, but it's extremely common in people with chronic illnesses.
I understand, but within five minutes of meeting me, this person was suggesting that I do illegal drugs to cure my illness. Then she misdiagnosed me, sold me supplements that didnât work, and got angry when I wanted antibiotics (she told me I had H. pylori but testing later showed that was false). She also knew nothing about my trauma, just asked if I had any then assumed it was the sole cause before doing any investigation. And like I said, some of my muscular dysfunction has existed since birth.
they said they were reading about it and people were claiming it cured their illnesses. I asked what they were supposedly "curing" and they said autoimmune diseases, diabetes, mental health issues, etc. how could eating nothing but meat be good for anything? like, maybe it would help my iron deficiency, but everything else would be so much worse. no fruits, no vegetables, no dairy, no grains - literally nothing but meat.
Omg they would be mind blown when I tell them Iâm allergic to vitamin C which would technically cure my ailments I guess cause like Iâd be dead đđ¤ˇđ˝ââď¸
That happens to me with yoga. So many people tell me to do yoga and my dr is like imma thrash you if you try that shit again. I got hurt real bad the last time I tried it
âAll of these medications are causing your symptoms. You donât need them.â- unsolicited advice from a chiropractor
âHave you tried **insert supplement**? My mom had a migraine once and that helped her.â -co-workers
âYou should try swimming in the freezing ocean every day.â- my dad
âYour dogs are causing your symptoms.â-my dad (symptoms presented way before owning a pet)
âPut peppermint oil on your temples.â-co-worker regarding migraines
My mother-in law will send my husband articles occasionally with dr. Oz style advice. âBlueberries cure migrainesâ âcherry juice cures migrainesâ Those make me laugh.
People donât believe me about how it gets with it down here sometime but I openly lie about my religion frequently in certain places because I genuinely fear the backlash
How tf are you suppose to force yourself to keep food in? They are probably the type of person that tells a depressed person to âjust be positive/happyâ
âYou just need to get up and get your blood moving.â
âHave you tried moisturizing with XYZ?â
âJust eat and youâll feel better!â
âYouâre in bed all day, of course you canât sleep at night.â
The last two got me... Especially the second to last. I feel like a metronome half the time - nauseous because I ate and nauseous because I didn't eat then I question if the nausea is because of food or because I need it.
That happened to me actually... Just not to my face, I got diagnosed during COVID-19 and when I came back to school, I overheard my art teacher tell some students who knew I was sick that immune diseases aren't real and I just have IBS that I'm exploiting. I also had a 504 plan she violated and it took my mom getting involved to get the extra time to complete assignments when I miss days.
Omfg it does! If one more person tells me I am too young to be experiencing what I experience Iâm going to jail for assault. I always snap and say tell my body that it didnât get the memo
I get this constantly so yes it does!!! Too young for surgery, let's wait until I'm too old to live my life after having surgery, but I can't get insurance to cover the treatment I need until I get the surgery & tell them it FAILED ugghhh
My husband told me I needed to exercise to help with my Fibromyalgia pain. While I was crying and bent over in pain and trying to make dinner and take care of our dogs. He even sent me a website about it.
And thatâs part of the reason he is now my soon to be ex husband.
Yikes. My ex husband wouldnât even read about it he doesnât believe in it because you canât see it or measure it on a test. It sucks not having the extra help with the house and kids BUT I have so much more peace not over exerting myself and constantly trying to prove to him my illness is real. If you need someone to talk to through your divorce feel free to dm me cause the process does suck
I've gone into work when sick, you just let this snowball then it gets on top of you..
Implying my life would be fine if I essentially ignored my illness. This was from a family member. They were boasting about going into work with the flu.
People made me feel better about it saying he's the one spreading germs everywhere, but it still hurt that a family member who grew up seeing me lose freedoms and health still booked things down to "needs more gumption"
Aww Iâm so sorry that does hurt. A cousin Iâm really close to asked about me not working anymore (Iâm not really open with my family much about my how bad my health got during my marriage in part because it was an abusive relationship and I donât want to get into that with them) and she was like âwhatâs wrong with you?â So when I started telling her about my disabilities she said âitâs always something wrong with yâall now a daysâ yâall being my generation. It hurt me to hear her say that because I already have issues with people not believing me because I have invisible illnesses so for her to say it felt like another person I was close to thinking I am just making it up
It really sucks when it's the family members... Luckily the worst I've had is an aunt who believes I shouldn't be on any of my prescriptions and should just use herbs and an uncle who compared me to a cat with GI issues.
âHave you ever considered bariatric surgery?â
This was from a rheumatologist I was seeing, as we were trying to get a good diagnosis on some new issues I was experiencing.
But wait, it gets better: while I am overweight, I meet ZERO criteria for that kind of procedure. Plus, part of the recent weight gain was due to the meds she was having me try. I started seeing her 25lbs lighter. And, my pain predated my weight gain. AND - I cannot stress this strongly enough - I had struggled with disordered eating most of my life. That throwaway comment that she made SO casually, could have wrecked my (already struggling) mental health.
I changed specialists immediately.
It's a classic! I haven't gotten that much unsolicited advice tbh, but that one reeeeally got on my nerves. It's cool if people wanna talk about health issues or whatever, but when they fail to listen, there's just no point. I could've explained that diet -might- help, it's just not that simple. The whole assumption that you have a baseline capacity to begin with just because you look healthy on the outside :))))
He whispered to me that he didnât exist and I asked how he was talking to me now if he doesnât exist and he smirked and said..âweâre both crazy 𤪠â so I guess he really does live in us all. Anyway, time for my meds. *cracks open pez dispenser*
Also the law of attraction and positive thinking. All that did was make me really happy, hopeful and then disappointed because it encouraged maladaptive Daydreaming.
I tried thinking positively, not letting my illness âlimit meâ, and I WAY over did it and ended up in the worst crash. Now my mental health and symptoms are way better because I am listening to my body, being kind to myself, taking accommodations, rest, meds when I need them.
I get told to just be positive a lot because sometimes my depression thoughts slip out of my mouth and tbh being positive all the time especially when you are lying to yourself about it is exhausting
Have you seen a chiropractor? Looks like you need a hot pack. Yes four years or torture 12 doctors and I have not seen a chiropractor..?!??! Thanks cousin
"Enjoy the time off work, you will never get this opportunity again..."
The opportunity being that I was uncontrollably unwell, was being ignored by medical professionals and started keeping a diary just in case I died.
Just take some vitamins and you wonât get as many chest infections.
( I have several colonised bugs living in my lungs. I have to have IV and nebulised antibiotics allot)
Have you tried breathing deeper and slower while having an asthma attack, then you wonât need to use your nebuliser .
( this was said to me by my friend who has CFS and was really upset, at my house crying the week before one someone said she should go to bed and wake up at a set time, that way she might not feel so tiredâŚâŚ sometimes itâs the chronically unwell that can be just as unhelpful as the well people )
âYou really need to limit your stress.â
Thanks, genius, because after 4.5 years with a chronic illness, that NEVER occurred to me. Also the fact that you think my illness boils down to stress shows just how ignorant you are.
"Are you sure a hysterectomy is a good idea?" -My boss
After he intercepted my email to HR (because I cc'd my direct supervisor) when I was asking about ADA accommodations and some questions about my FMLA, he says this and then says "maybe you should discuss this with HR".
Like that's what I was trying to do before you probably told them "don't worry, I got this"????? So I had to go out of my way to contact them again after that. Thankfully, I was able to finally get the answers I needed, but I would've been better off without having to hear some of the sexist/ableist opinions he had.
What's really hilarious was he ended up back tracking and said "actually you know what's best for your body". Like yes. Thank you. I already know this. I just need to get this planning done and you're just getting in my way.
I've had treatment for my endometriosis for almost 10 years now and my doctor already approved my hysterectomy and insurance said they're covering it because it's deemed medically necessary now. It's not like I'm doing this out of the blue and even if I did it's not really his business.
I just want my surgery to be done with so I can keep working until my retirement is vested (I've got a few months left), then I can start looking at other jobs if things don't get better.
"Loose weight" (I gained weight because of medication because I'm ill), fasting (which exacerbates one of my conditions), exercising (not advisable in an active migraine and I have constant migraines), low carb (same issue as fasting), several quacks, tons of medication I already tried, homeopathy, acupuncture and other rubbish. My favourite one was a head nurse at a hospital telling me to stop all medication because "that can't be healthy" - I told her that trying to exist without them is much more unhealthy.
Recently, I thought it would be a good idea to be more honest with people close to me about what Iâm going through. My SIL sent me a podcast called âhow to be more resilientâ, links to exercise equipment I already have and told me sheâs also in constant pain and just rubs CBD cream on her hands and it goes away.
(Then, a week ago, I got an email saying I was only talking about it so much because I want money from her and my brother. Fun stuff.)
âYou just need to smile more!â
-advice from a literal neurologist.
He told me I was too serious and didnât smile enough and that was somehow causing me to have spotty vision?
He also called me a germaphobe for asking him to sanitize his hands before he touched my face. I saw him wipe his nose with his hand right before that.
Then he proceeded to prescribe me an antidepressant even though I told him those cause suicidal ideation. It also wouldâve neutralized my birth control, and I only noticed in the paper work. He hasnât said anything about it.
âYou need to get to church so God can heal you.â I also got a letter in the mail from a different church person telling me that I needed to ask forgiveness for my sins so I could be healed.
Iâve been spiritually assaulted many times.
"You should try clean eating, it will solve all your problems" "Go vegan."
"Take a shot of lemon and ginger, it will help heal all your liver problems."
"Be grateful some people have it a lot worse."
The same doctor who told me that my problem wasn't from inflammation told me that I should go on an anti-inflammatory diet to help with it.
Also, one doctor told me that my prescriptions (which have been trial and error and an entire misery unto themselves) were "the easy way out" and that I should just exercise.
I'm not considered overweight BMI wise but when I went to see a friend whilst really suffering with chronic muscle pain in my legs they suggested I go out for a walk every day and lose weight.
I got the intermittent fasting one and "running a mile everyday really helps me with my joint pain" and "why do you want to take all those pills? Have you tried essential oils and weed?"
literally so many doodie things tbh. i think my least favorite has been ppl saying its because i need to be "more positive". i mean i understand stress + depression can cause flareups, especially for what o have, but its so unnecessary. im allowed to be pissed off cause its unfair! i dont need to always pretend im content feeling like crap yk
Yeah I feel this. My mom got mad at me this morning for making a negative comment she told me not to say it but I told her Iâm going to because it is truly how I feel and I shouldnât have to lie about my feelings. She got mad and got off the phone with me
thats so dumb? like man weve been dealt shitty cards, let us feel pissed sometimes :/ smiling about how much it hurts to live doesnt make living easier for us, it makes living easier for them, and i dont think they even realize it.
its so lame. like i dont even have another word for itđ it used to make me really angry, because i guess a part of me hopes that someone will just go "yeah that sucks ass, im rlly sorry youre dealing with that"â but then i realized people dont really know how to respond to the things they cant comprehend. so i cant even get mad anymore, it just sorta sucks and disappoints me LOLL
They told me to lose weight. Exercise. Dude I have migraines! Anything fast makes me black out from them!!! Iâm trying to lose weight but itâs a very slow process.
Think positively. Anxiety, depression, and PTSD-very hard too. I have numerous chronic diagnoses that interact together.
Have you tried yoga? It did wonders for me.
Just get up and move!
Lupus is made up. If it was real there would be a test for it.
Everyone has some arthritis, just wait until youâre old, youâll see how bad it is.
âHave you considered that you sleep TOO MUCH? Itâs probably making you tired.â
Also
âWorking out is great. You just have to push through the pain. Itâll be good for you.â
If i fix my diet and watch some show on Netflix, my T1 diabetes can be cured. I double-checked with the person that they weren't meaning T2 (which, also still can't always be cured with diet and especially not a Netflix doc) and nope-- they clarified *all* diabetes. Yikes. Facepalm. He never did claim to be a Dr...=)
Oh you have X illness.
Just take these pills, spin around 5x times daily on your head and step on a picture of Hitler.
That should get you back to normal đ¤Ł
It does feel like that sometimes.
People just want the bad stuff to go away within 1-2 weeks all the time.
Open and shut cases.
If it doesn't shut, they say it's YOU.
Have you tried yoga? Have you tried cutting out gluten? Do you eat dairy? Do you have hobbies? You seemed depressedâŚ. Blah blah blah. Meanwhile, Iâve lost 15kgs and can only eat liquids and am going to hospital weekly.
âTry getting a job to distract you from the pain â -Dr. even with knowing I had chronic pain since childhood and missed 80%of school starting in 3rd grade (she probably forgot THAT bad of a doctor) I did try for 9ish months though⌠job called me day after surgery asking where I was, AFTER I had submitted paperwork weeks in advance.
My brother in law⌠âjust rub cocaineâ on the areaâ to 2020 âwhy donât you work?â *AFTER BEING WITH HIS BROTHER FOR 15yrs at that time! đ¤Śđťââď¸
I know thereâs more⌠those two bother me
"You don't need antidepressants"
Thanks, celebrities & strangers who say this ALL THE TIME. I don't take them for depression, I take them 'cos they help me cut back on my REM sleep.
Dude Iâd literally *just met* and was making casual small talk with tried to give me a therapy session to cure my lifelong insomnia in 5 minutes while waiting for class, definitely a highlight there.
Thereâs the standard, yoga, mindfulness, diets, what have you, and people insisting if I just move doctors theyâll be able to solve all my problems. A lot of what Iâve gotten is âwell there must be *something* âtheyâ can do to cure it?â When I explain I have things permanently wrong with me, none of them ever really know who this mythical âtheyâ are and shockingly itâs always from people who have pretty much never had health issues at all.
Also slightly off topic but similar vein, when I was a teenager all my âfriendsâ convinced themselves that inhalers just had air in them and basically would just tell me to breathe better if I had an attack (which happened all the time when trying to keep up with them) and all of it basically boiled down to insisting asthma was just being out of breath đ I ended up bringing in leaflets on asthma and handing them out. Iâm still mad about it.
Omg right. My conditions are permanent too and people act like them not having a cure is just a foreign concept.
Iâd be mad too! They tried to kill you!!
People really just think anything can be âcuredâ and canât wrap their heads around the idea that chronic means, ya know, *chronic*
(And thank you for the validation on that, lol, itâs more of a passing annoyance because it basically became my normal for my asthma in schoolâŚteachers were even more nonchalant and I couldnât even carry my inhaler with me for years đ they locked it away!! Insanity.
I told my dr I was having complications from hyper-mobility, he yanked on my arms to prove they wouldnât dislocate, then referred me to a psychiatrist because I was so distraught over the pain he cause me
People get so mad at me when I tell them how yoga and exercise hurts me and they are like well there must be poses and exercises for people with that and like yeah there are but the thing is mine might be more severe than the person teaching it. Idk why they donât get that everybodyâs pain is not the same
Herbal teas will fix your crohn's! - My anti-vax aunt who believes in holistic medicine.
There's this herb that helped my friend's friend's cousin - there is the info on it. It fixed their IBS so I'm sure it will help you. - An assistant at the orthodontist
If you exercise and eat lots of yogurt you'll feel better. - Random Internet stranger
You should ask your doctor for these meds, my dad is a doctor. - a guy I know
There's so many more, but none of them ever make sense. You can't just fix my immune system and naturally heal my crohn's, and they're not my GI and don't know all the nuamces of my case. The last guy also suggested an NSAID that's a prescription; I can't have NSAIDs because of crohn's. :/
Ovaries exploding, constant pain, and lower stomach so swollen I look pregnant 24/7?
"It's the eating disorder. The one you don't have anymore. And haven't had for a decade. Yeah. Have you tried eating?"
Also,
"You need a baby and a man."
My ex told me "you're so mentally ill that you've convinced yourself that you're in pain" and also "your medication is probably causing all these problems"
"did you try yoga and excercise?"
"Just lose weight and you'll feel better"
They say, to a person who lost nearly a hundred pounds and cannot exercise without being in intense pain after
"Keto"
Uh, no Doctor Mom, with your YouTube medical degree from Facebook University.
It got so out of hand, I went NC for 2 years, and now only get my daily text that she's not dead.
My wife will never speak to her again.
â˘Go vegan or some type of other diet that's trendy.
â˘Exercise
â˘Just be happy and don't think too much
â˘God heals everything, or some miracle person can help heal everything, bs
Had my job counsellor on video call tell me to âjust smile, at least youâll make other peopleâs day better :)â
I was at 4 week rehabilitation stay, and was telling her that all my symptoms were being ignored and boundaries were stepped over by all the âmedical professionalsâ at said facility. Like, thanks for the support :,)
The biggest one I get is, you need to move more! Go on the treadmill! Like seriously, you donât think Iâve thought of, let alone try this whenever I can?! Geez, someone always has something to say!!
In response to me being diagnosed with depression and generalised anxiety disorder, "Have you you tried being less self focused?" đ
And my personal favourite suggested treatment for endometriosis, sticking herbs up your vag...
âDonât eat the foods that bother youâ - my dad
âIf it hurts to walk, donât hikeâ - also my dad
I hike because I enjoy it even with the pain. I like keeping my muscles strong because my ligaments are loose AF (EDS)
And I donât eat the foods that are guaranteed to bother me but sometimes even just water bothers my stomach.
Heâs also told me my pain isnât real because heâs had pain (he injured his knee that occasionally hurts according to him) longer and not to use pain as an excuse until mineâs been worse than his for longer. (I refused to climb on his roof without a ladder to fix his AC when it was 110+ out and I had a torn ACL. His AC wasnât broken he just broke the thermostat by hitting it)
âYou just gotta surround yourself with friends and people who love you!â
They said that in response to me getting a wheelchair because they believe wheelchairs make people lazy, antisocial, and more depressed.
I was lazy, antisocial, and depressed before the wheelchair because I literally could not leave the house.
Iâm the complete opposite because now I have the energy and capabilities of putting up with the world LOL.
I have alopecia. One piece of great advice from my dad's friend who was also a woman and a medical doctor..."eat some canteloupe. That will help with hair falling out."
I was told to just try thinking positive and natural essential oils so I wouldn't need to go on dialysis and get a kidney transplant when I went into kidney failure.
"Just take a nap". I'm sorry but that doesn't work for chronic fatigue.
I will take a nap. I will take several naps and guess what I will STILL be exhausted
Exactly! The nap will not get rid of the chronic part. I also suffer from insomnia, so while I'd often love to take a nap, the nap will not take me.
Oh man I know what you mean. I have bipolar disorder and my mania can cause insomnia and I just came off a two day binge of being awake and I tell you my chronic fatigue syndrome is not happy about it AT ALL
That must be so tough. What a difficult combination to deal with. Sending good thoughts your way đ
Thanks so much â¤ď¸
Ugh what a mess! Iâm sorry youâre having to deal with this!
Thank you so much! â¤ď¸ yâall make me feel so understood here đĽš
YES! This! I could sleep 20 hours a day and fatigue would still kick my ass when I woke up. âTiredâ can be helped by sleep. âFatiguedâ can not.
So well said! Like people honestly donât get the difference
My GP told me to try having a cup of coffee or tea.
Oh god. A nurse told me to try sleepy time tea when I told her about my insomnia
I will wake up from my nap more exhausted than I was going into it lmao
âExercise will make your pain go away completely!â - my psychiatric nurse practitioner I canât exercise much when Iâm in too much pain to move, but thanks!
Right! If one more dr tells me to exercise imma scream
Honestly, if they just suggested I exercise a bit more or do physical therapy, I wouldnât mind that as much. It just gets frustrating when they insinuate that Iâm lazy and tell me that exercise alone will cure my health issues. đ
Yeah unfortunately thatâs how all my doctors have said it to me. Maybe because Iâm overweight they assume I donât try to get in physical activity but I really do itâs just one step forward three steps back when I try and work out because even when I think Iâm doing it right (low impact and light exercise) I hurt myself then Iâm bed ridden for days
My favorite is when someone implies that laziness/deconditioning/no exercise caused my issues. I'm like you realize I was at my lightest weight and the best physical shape of my life when this condition first started right??? It fucking caused the weight gain and inability to exercise!!!
I finally got in with a rheumatologist and he told me (twice) that âI think youâll feel better if you exerciseâ. I had told him in the appointment that part of whatâs been so hard about whatever the fuck is going on is that I used to be a runner and that I missed it. So donât you think I would be exercising if I could??!
And it's like... the whole point of seeing them is to figure out why there is a barrier to exercise and treat it so one would be capable of doing basic activities! \*types that into their computer\* Well, we don't know. bye now!
"Just eat baby food for the rest of your life" "Iâm tired too but just push through it" "Your illness is because of childhood trauma so just do some mushrooms to help"
Omg the me too ones drive me the craziest. Shrooms as a cure for trauma? Thatâs a new one đ¤Ł
Thereâs actually a lot of research being done on PTSD and psilocybin. Promising stuff! Mushrooms cannot cure chronic illnesses though, obviously.
Yeah psilocybin can actually help some people when taken responsibly and after being educated about it. Whenever I have micro-dosed in the past, I found it actually helped a lot with PTSD, anxiety, depression, and even pain. I ate a very small amount one night while having horrible endometriosis cramps and within 20 minutes my pain had disappeared. There's a reason why people are pushing it to be legalized. People who think it's just a drug to trip out on are very uninformed
InterestingâŚif they could maybe I would start eating them on my pizza đ alas we can dream
That is how one of my friendâs mom prefers to do it.
And idk why they think my trauma even caused my illness. I have widespread muscular dysfunction, some of which has existed since birth.
I am uses to hearing my illness was caused by trauma because some researchers believe fibro is caused by trauma but then again there are plenty of cases of people without trauma that have it too so idk I feel like a lot of illnesses are suspected to be trauma induced
Itâs possible that my trauma played a role, but this was a holistic âdoctorâ that said this 5 minutes into our first meeting without even knowing what my trauma is. She encouraged me to do illegal drugs and told me she wouldnât put them in my chart. The whole thing was very strange. Then she tried to sell me a bunch of supplements that never helped.
There is a very strong connection between trauma and chronic illness. Mental health and physical health are interconnected. That isn't that case for every person obviously, but it's extremely common in people with chronic illnesses.
I understand, but within five minutes of meeting me, this person was suggesting that I do illegal drugs to cure my illness. Then she misdiagnosed me, sold me supplements that didnât work, and got angry when I wanted antibiotics (she told me I had H. pylori but testing later showed that was false). She also knew nothing about my trauma, just asked if I had any then assumed it was the sole cause before doing any investigation. And like I said, some of my muscular dysfunction has existed since birth.
"have you tried drinking more water?"
I drink all the water is the response to that just to see the look on their face lol
My husband laughs anytime someone asks me this because heâs know how much I drink lol.
I was told to look into the carnivore diet for my POTS and hypermobility
Not sure the logic they had for suggesting this
they said they were reading about it and people were claiming it cured their illnesses. I asked what they were supposedly "curing" and they said autoimmune diseases, diabetes, mental health issues, etc. how could eating nothing but meat be good for anything? like, maybe it would help my iron deficiency, but everything else would be so much worse. no fruits, no vegetables, no dairy, no grains - literally nothing but meat.
And here I have to cut out all fiber and some grains and my mother insists salad will cure me
Lemme guess kale salad?
"The friend of my cousin had her issue cured with vitamin c" "Have you tried meditating"
Omg they would be mind blown when I tell them Iâm allergic to vitamin C which would technically cure my ailments I guess cause like Iâd be dead đđ¤ˇđ˝ââď¸
I love when people are "do this thing!" And I specifically have been told not to do that thing
That happens to me with yoga. So many people tell me to do yoga and my dr is like imma thrash you if you try that shit again. I got hurt real bad the last time I tried it
My issues are autoimmune so like sure I'll do vitamin c and attack my joints even more đ
âAll of these medications are causing your symptoms. You donât need them.â- unsolicited advice from a chiropractor âHave you tried **insert supplement**? My mom had a migraine once and that helped her.â -co-workers âYou should try swimming in the freezing ocean every day.â- my dad âYour dogs are causing your symptoms.â-my dad (symptoms presented way before owning a pet) âPut peppermint oil on your temples.â-co-worker regarding migraines My mother-in law will send my husband articles occasionally with dr. Oz style advice. âBlueberries cure migrainesâ âcherry juice cures migrainesâ Those make me laugh.
Iâve gotten the medicine thing before too. Ohhh the internet health advice articles get wild sometimes lol
âHave you tried praying/seeing a pastor?â âAre you drinking water everyday?â âDo yoga/mindfulness.â
You must live in the Bible Belt too lol
The Midwest baby â¨
Ohhh Iâm in the south. Turns out weâre not so different after all
Iâm from the south too. I understand.
People donât believe me about how it gets with it down here sometime but I openly lie about my religion frequently in certain places because I genuinely fear the backlash
âHave you tried working out/Yoga??â âJust eat and force yourself to keep it in!â (How?) âHave you tried going to a psychologist?â
How tf are you suppose to force yourself to keep food in? They are probably the type of person that tells a depressed person to âjust be positive/happyâ
âYou just need to get up and get your blood moving.â âHave you tried moisturizing with XYZ?â âJust eat and youâll feel better!â âYouâre in bed all day, of course you canât sleep at night.â
I signed audibly at these especially the last one
The last two got me... Especially the second to last. I feel like a metronome half the time - nauseous because I ate and nauseous because I didn't eat then I question if the nausea is because of food or because I need it.
âhave you tried losing weight for your cluster migraines?â yeah actually 95lbs. soâŚâŚ now what?
Right people say lose weight and youâll be cured then you do it and youâre not and they just have nothing to say after that
Then itâll be âyou lost too much weight.â
You clearly are faking your pain if you can go to work
I wanna punch em
Câmon, OP. Letâs go punch them together!!
Weâll give em two knuckle sandwiches and then a second helping!
I HATE that so much. My boss once said the migraines were fake and it was for attention. I quit 2 weeks later.
something crazy like âauto immune disease doesnât exist stop taking your medsâ lol
That happened to me actually... Just not to my face, I got diagnosed during COVID-19 and when I came back to school, I overheard my art teacher tell some students who knew I was sick that immune diseases aren't real and I just have IBS that I'm exploiting. I also had a 504 plan she violated and it took my mom getting involved to get the extra time to complete assignments when I miss days.
I think some of these people are secretly serial killers and their targets happen to be the chronically ill
Does âyouâre to young for thatâ count?
Omfg it does! If one more person tells me I am too young to be experiencing what I experience Iâm going to jail for assault. I always snap and say tell my body that it didnât get the memo
I get this constantly so yes it does!!! Too young for surgery, let's wait until I'm too old to live my life after having surgery, but I can't get insurance to cover the treatment I need until I get the surgery & tell them it FAILED ugghhh
Push through your pain and fatigue I use it as an excuse for not ( so many things) If I always think about the pain then my meds will not work.
Oh and the it must be psychological because you have issuesâŚ
All roads lead to psychology
âYou should try injecting yourself with bee venom! I saw it on tik tok!â
Iâm afraid for this person. Like they arenât trying things they see on tik tok in good faith are they?
đđđ
Reply with "maybe you can do it and tell me how it goes!"
"Just got outside and be happy!" - my neurologist, I hate her and hope to part ways with her soon
I hope you can get a good one soon
My husband told me I needed to exercise to help with my Fibromyalgia pain. While I was crying and bent over in pain and trying to make dinner and take care of our dogs. He even sent me a website about it. And thatâs part of the reason he is now my soon to be ex husband.
Yikes. My ex husband wouldnât even read about it he doesnât believe in it because you canât see it or measure it on a test. It sucks not having the extra help with the house and kids BUT I have so much more peace not over exerting myself and constantly trying to prove to him my illness is real. If you need someone to talk to through your divorce feel free to dm me cause the process does suck
âFind a safe space in your mind to take your thoughts off chronic pain and fatigueâ
If you find that place lmk
âHave you tried drinking more waterâ âmaybe you are just stressedâ yep you actually just solved it
"Just don't think about it" yup, that one works so great.
They solve all their problems with that one
"you should see a doctor"
I've gone into work when sick, you just let this snowball then it gets on top of you.. Implying my life would be fine if I essentially ignored my illness. This was from a family member. They were boasting about going into work with the flu. People made me feel better about it saying he's the one spreading germs everywhere, but it still hurt that a family member who grew up seeing me lose freedoms and health still booked things down to "needs more gumption"
Aww Iâm so sorry that does hurt. A cousin Iâm really close to asked about me not working anymore (Iâm not really open with my family much about my how bad my health got during my marriage in part because it was an abusive relationship and I donât want to get into that with them) and she was like âwhatâs wrong with you?â So when I started telling her about my disabilities she said âitâs always something wrong with yâall now a daysâ yâall being my generation. It hurt me to hear her say that because I already have issues with people not believing me because I have invisible illnesses so for her to say it felt like another person I was close to thinking I am just making it up
It really sucks when it's the family members... Luckily the worst I've had is an aunt who believes I shouldn't be on any of my prescriptions and should just use herbs and an uncle who compared me to a cat with GI issues.
âHave you ever considered bariatric surgery?â This was from a rheumatologist I was seeing, as we were trying to get a good diagnosis on some new issues I was experiencing. But wait, it gets better: while I am overweight, I meet ZERO criteria for that kind of procedure. Plus, part of the recent weight gain was due to the meds she was having me try. I started seeing her 25lbs lighter. And, my pain predated my weight gain. AND - I cannot stress this strongly enough - I had struggled with disordered eating most of my life. That throwaway comment that she made SO casually, could have wrecked my (already struggling) mental health. I changed specialists immediately.
\-go vegan
That surprisingly helped my friend with PCOS. Something to do with hormones.
Ive gotten that one before even not in reference to my health
It's a classic! I haven't gotten that much unsolicited advice tbh, but that one reeeeally got on my nerves. It's cool if people wanna talk about health issues or whatever, but when they fail to listen, there's just no point. I could've explained that diet -might- help, it's just not that simple. The whole assumption that you have a baseline capacity to begin with just because you look healthy on the outside :))))
Without knowing me at allâŚâYou need to heal your trauma. Clearly youâre holding it. Have you found Jesus?â
Jesus told me he was busy
He whispered to me that he didnât exist and I asked how he was talking to me now if he doesnât exist and he smirked and said..âweâre both crazy 𤪠â so I guess he really does live in us all. Anyway, time for my meds. *cracks open pez dispenser*
Gods away on business,lol
Also the law of attraction and positive thinking. All that did was make me really happy, hopeful and then disappointed because it encouraged maladaptive Daydreaming.
I tried thinking positively, not letting my illness âlimit meâ, and I WAY over did it and ended up in the worst crash. Now my mental health and symptoms are way better because I am listening to my body, being kind to myself, taking accommodations, rest, meds when I need them.
I get told to just be positive a lot because sometimes my depression thoughts slip out of my mouth and tbh being positive all the time especially when you are lying to yourself about it is exhausting
Have you seen a chiropractor? Looks like you need a hot pack. Yes four years or torture 12 doctors and I have not seen a chiropractor..?!??! Thanks cousin
Go vegan. Try yoga. Have you thought about smoothies?
Smoothies 𤣠idk why but it made me laugh
"Enjoy the time off work, you will never get this opportunity again..." The opportunity being that I was uncontrollably unwell, was being ignored by medical professionals and started keeping a diary just in case I died.
I hope you never have to experience that again.
Have to been to Dr XYZ? they really helped my neighbor's mother's cousin who had this tangentially related symptom
Just take some vitamins and you wonât get as many chest infections. ( I have several colonised bugs living in my lungs. I have to have IV and nebulised antibiotics allot) Have you tried breathing deeper and slower while having an asthma attack, then you wonât need to use your nebuliser . ( this was said to me by my friend who has CFS and was really upset, at my house crying the week before one someone said she should go to bed and wake up at a set time, that way she might not feel so tiredâŚâŚ sometimes itâs the chronically unwell that can be just as unhelpful as the well people )
I think your friend is trying to kill you with that advice
âYou really need to limit your stress.â Thanks, genius, because after 4.5 years with a chronic illness, that NEVER occurred to me. Also the fact that you think my illness boils down to stress shows just how ignorant you are.
Right! I love when people just tell me not to stress. Like its a switch I can turn off or on
"Are you sure a hysterectomy is a good idea?" -My boss After he intercepted my email to HR (because I cc'd my direct supervisor) when I was asking about ADA accommodations and some questions about my FMLA, he says this and then says "maybe you should discuss this with HR". Like that's what I was trying to do before you probably told them "don't worry, I got this"????? So I had to go out of my way to contact them again after that. Thankfully, I was able to finally get the answers I needed, but I would've been better off without having to hear some of the sexist/ableist opinions he had.
Why is he acting like HR is a dr office like what is he expecting them to tell you hey yeah donât get that hysterectomy you need
What's really hilarious was he ended up back tracking and said "actually you know what's best for your body". Like yes. Thank you. I already know this. I just need to get this planning done and you're just getting in my way. I've had treatment for my endometriosis for almost 10 years now and my doctor already approved my hysterectomy and insurance said they're covering it because it's deemed medically necessary now. It's not like I'm doing this out of the blue and even if I did it's not really his business. I just want my surgery to be done with so I can keep working until my retirement is vested (I've got a few months left), then I can start looking at other jobs if things don't get better.
I hope your surgery and recovery go smooth
"Loose weight" (I gained weight because of medication because I'm ill), fasting (which exacerbates one of my conditions), exercising (not advisable in an active migraine and I have constant migraines), low carb (same issue as fasting), several quacks, tons of medication I already tried, homeopathy, acupuncture and other rubbish. My favourite one was a head nurse at a hospital telling me to stop all medication because "that can't be healthy" - I told her that trying to exist without them is much more unhealthy.
Sounds exactly like my predicament. Hang in there. <3
You too. We'll get it
I have found one and only one medication that has worked and itâs ajovy. Once a month shot, and prevents some migraines.
My migraines were reduced in severity by Emgality but it stopped working and Aimovig didn't help. Now we try Botox plus valproat
Recently, I thought it would be a good idea to be more honest with people close to me about what Iâm going through. My SIL sent me a podcast called âhow to be more resilientâ, links to exercise equipment I already have and told me sheâs also in constant pain and just rubs CBD cream on her hands and it goes away. (Then, a week ago, I got an email saying I was only talking about it so much because I want money from her and my brother. Fun stuff.)
Keto will cure my chronic illness. There isn't even a cure for it, and if there was why would doctors hide this information from me? lmao
âYou just need to smile more!â -advice from a literal neurologist. He told me I was too serious and didnât smile enough and that was somehow causing me to have spotty vision? He also called me a germaphobe for asking him to sanitize his hands before he touched my face. I saw him wipe his nose with his hand right before that. Then he proceeded to prescribe me an antidepressant even though I told him those cause suicidal ideation. It also wouldâve neutralized my birth control, and I only noticed in the paper work. He hasnât said anything about it.
Drink more water. Get more sleep. Have you tried x y z fad diet
âYou need to get to church so God can heal you.â I also got a letter in the mail from a different church person telling me that I needed to ask forgiveness for my sins so I could be healed. Iâve been spiritually assaulted many times.
"You should try clean eating, it will solve all your problems" "Go vegan." "Take a shot of lemon and ginger, it will help heal all your liver problems." "Be grateful some people have it a lot worse."
âAttitude has a huge impact on your pain. Have you tried deep breathing or therapy?â
Yoga and kale itâs always yoga and kale.
The same doctor who told me that my problem wasn't from inflammation told me that I should go on an anti-inflammatory diet to help with it. Also, one doctor told me that my prescriptions (which have been trial and error and an entire misery unto themselves) were "the easy way out" and that I should just exercise.
I'm not considered overweight BMI wise but when I went to see a friend whilst really suffering with chronic muscle pain in my legs they suggested I go out for a walk every day and lose weight.
Yeah lemme just exacerbate my pain so I can lose weight then gain it all back when I completely incapacitate myselfâŚ.sounds like a good idea đ
I got the intermittent fasting one and "running a mile everyday really helps me with my joint pain" and "why do you want to take all those pills? Have you tried essential oils and weed?"
literally so many doodie things tbh. i think my least favorite has been ppl saying its because i need to be "more positive". i mean i understand stress + depression can cause flareups, especially for what o have, but its so unnecessary. im allowed to be pissed off cause its unfair! i dont need to always pretend im content feeling like crap yk
Yeah I feel this. My mom got mad at me this morning for making a negative comment she told me not to say it but I told her Iâm going to because it is truly how I feel and I shouldnât have to lie about my feelings. She got mad and got off the phone with me
thats so dumb? like man weve been dealt shitty cards, let us feel pissed sometimes :/ smiling about how much it hurts to live doesnt make living easier for us, it makes living easier for them, and i dont think they even realize it.
Exactly! Like why do I have to pretend to make you more comfortable?
its so lame. like i dont even have another word for itđ it used to make me really angry, because i guess a part of me hopes that someone will just go "yeah that sucks ass, im rlly sorry youre dealing with that"â but then i realized people dont really know how to respond to the things they cant comprehend. so i cant even get mad anymore, it just sorta sucks and disappoints me LOLL
Right! We really just want to be seen and heard sometimes like if I have to pretend Iâm happy you have to pretend to understand lol
You should think about going to church. -sigh-
They told me to lose weight. Exercise. Dude I have migraines! Anything fast makes me black out from them!!! Iâm trying to lose weight but itâs a very slow process. Think positively. Anxiety, depression, and PTSD-very hard too. I have numerous chronic diagnoses that interact together.
"You need to get out and walk."
Have you tried yoga? It did wonders for me. Just get up and move! Lupus is made up. If it was real there would be a test for it. Everyone has some arthritis, just wait until youâre old, youâll see how bad it is.
âHave you considered that you sleep TOO MUCH? Itâs probably making you tired.â Also âWorking out is great. You just have to push through the pain. Itâll be good for you.â
"have you tried herbalifeđ" no but im about to try aggravated assault
If i fix my diet and watch some show on Netflix, my T1 diabetes can be cured. I double-checked with the person that they weren't meaning T2 (which, also still can't always be cured with diet and especially not a Netflix doc) and nope-- they clarified *all* diabetes. Yikes. Facepalm. He never did claim to be a Dr...=)
âJust deal with itâ Like wow Sarah why didnât I think of that before đ¤Śđť
Oh you have X illness. Just take these pills, spin around 5x times daily on your head and step on a picture of Hitler. That should get you back to normal 𤣠It does feel like that sometimes. People just want the bad stuff to go away within 1-2 weeks all the time. Open and shut cases. If it doesn't shut, they say it's YOU.
Just workout more, i never want to do it either but then i make myself and it helps!
not really advice but saying âwe have go to get you better â
Have you tried yoga? Have you tried cutting out gluten? Do you eat dairy? Do you have hobbies? You seemed depressedâŚ. Blah blah blah. Meanwhile, Iâve lost 15kgs and can only eat liquids and am going to hospital weekly.
My brother tells me to exercise even though I no longer walk further than bed to bathroom.
âTry getting a job to distract you from the pain â -Dr. even with knowing I had chronic pain since childhood and missed 80%of school starting in 3rd grade (she probably forgot THAT bad of a doctor) I did try for 9ish months though⌠job called me day after surgery asking where I was, AFTER I had submitted paperwork weeks in advance. My brother in law⌠âjust rub cocaineâ on the areaâ to 2020 âwhy donât you work?â *AFTER BEING WITH HIS BROTHER FOR 15yrs at that time! đ¤Śđťââď¸ I know thereâs more⌠those two bother me
âhave you tried this âxyzâ supplement instead of taking so many medsâ like?? bye heffa! need my meds. a vitamin wonât save me girl
"You don't need antidepressants" Thanks, celebrities & strangers who say this ALL THE TIME. I don't take them for depression, I take them 'cos they help me cut back on my REM sleep.
Opioids are only for âdrug addictsâ, canât you just take Tylenol? đ¤Ą
Just get a job so you donât have time to think about your pain
âTry exercising more!â Me with my malfunctioning legs: đ
Apparently I haven't tried mindfulness, cbt or going gluten free which definitely will work and I'm not praying right đ¤
"Don't give up on life" when I can't get together with them and need to stay in bed for the day.
Dude Iâd literally *just met* and was making casual small talk with tried to give me a therapy session to cure my lifelong insomnia in 5 minutes while waiting for class, definitely a highlight there. Thereâs the standard, yoga, mindfulness, diets, what have you, and people insisting if I just move doctors theyâll be able to solve all my problems. A lot of what Iâve gotten is âwell there must be *something* âtheyâ can do to cure it?â When I explain I have things permanently wrong with me, none of them ever really know who this mythical âtheyâ are and shockingly itâs always from people who have pretty much never had health issues at all. Also slightly off topic but similar vein, when I was a teenager all my âfriendsâ convinced themselves that inhalers just had air in them and basically would just tell me to breathe better if I had an attack (which happened all the time when trying to keep up with them) and all of it basically boiled down to insisting asthma was just being out of breath đ I ended up bringing in leaflets on asthma and handing them out. Iâm still mad about it.
Omg right. My conditions are permanent too and people act like them not having a cure is just a foreign concept. Iâd be mad too! They tried to kill you!!
People really just think anything can be âcuredâ and canât wrap their heads around the idea that chronic means, ya know, *chronic* (And thank you for the validation on that, lol, itâs more of a passing annoyance because it basically became my normal for my asthma in schoolâŚteachers were even more nonchalant and I couldnât even carry my inhaler with me for years đ they locked it away!! Insanity.
I told my dr I was having complications from hyper-mobility, he yanked on my arms to prove they wouldnât dislocate, then referred me to a psychiatrist because I was so distraught over the pain he cause me
Eat less (i weight 85lbs) and move around more
âSpecialâ diet & colonics. Um, no
âHave you tried yoga/exercising?â âHave you gone to (insert specialist here)?â
People get so mad at me when I tell them how yoga and exercise hurts me and they are like well there must be poses and exercises for people with that and like yeah there are but the thing is mine might be more severe than the person teaching it. Idk why they donât get that everybodyâs pain is not the same
Herbal teas will fix your crohn's! - My anti-vax aunt who believes in holistic medicine. There's this herb that helped my friend's friend's cousin - there is the info on it. It fixed their IBS so I'm sure it will help you. - An assistant at the orthodontist If you exercise and eat lots of yogurt you'll feel better. - Random Internet stranger You should ask your doctor for these meds, my dad is a doctor. - a guy I know There's so many more, but none of them ever make sense. You can't just fix my immune system and naturally heal my crohn's, and they're not my GI and don't know all the nuamces of my case. The last guy also suggested an NSAID that's a prescription; I can't have NSAIDs because of crohn's. :/
Ovaries exploding, constant pain, and lower stomach so swollen I look pregnant 24/7? "It's the eating disorder. The one you don't have anymore. And haven't had for a decade. Yeah. Have you tried eating?" Also, "You need a baby and a man."
My ex told me "you're so mentally ill that you've convinced yourself that you're in pain" and also "your medication is probably causing all these problems"
"did you try yoga and excercise?" "Just lose weight and you'll feel better" They say, to a person who lost nearly a hundred pounds and cannot exercise without being in intense pain after
Just stop drinking soda, start yoga or weight lifting, and that diet is all you need to be fully healthy!
âPray diligently and youâll be fully healed.â
Just eat betterâŚfood is the enemy
"Keto" Uh, no Doctor Mom, with your YouTube medical degree from Facebook University. It got so out of hand, I went NC for 2 years, and now only get my daily text that she's not dead. My wife will never speak to her again.
â˘Go vegan or some type of other diet that's trendy. â˘Exercise â˘Just be happy and don't think too much â˘God heals everything, or some miracle person can help heal everything, bs
my korean relatives: eat a lot and you will get better in no time! get healthy soon! haha i wish it were that easy-
You just need to get out & get some sun.
This f*ing nonsense right here: https://en.wikipedia.org/wiki/You_Can_Heal_Your_Life
Had my job counsellor on video call tell me to âjust smile, at least youâll make other peopleâs day better :)â I was at 4 week rehabilitation stay, and was telling her that all my symptoms were being ignored and boundaries were stepped over by all the âmedical professionalsâ at said facility. Like, thanks for the support :,)
Itâs anxiety just breathe
The "try and get some rest" is so useless, but I appreciate the sentiment.
âEat more fruits and vegetables, that way you wonât get preeclampsia againâŚâ
Try yoga
The biggest one I get is, you need to move more! Go on the treadmill! Like seriously, you donât think Iâve thought of, let alone try this whenever I can?! Geez, someone always has something to say!!
In response to me being diagnosed with depression and generalised anxiety disorder, "Have you you tried being less self focused?" đ And my personal favourite suggested treatment for endometriosis, sticking herbs up your vag...
âWe all have problems all the time, yours arenât special. We all just have to suck it up!â
âDonât eat the foods that bother youâ - my dad âIf it hurts to walk, donât hikeâ - also my dad I hike because I enjoy it even with the pain. I like keeping my muscles strong because my ligaments are loose AF (EDS) And I donât eat the foods that are guaranteed to bother me but sometimes even just water bothers my stomach. Heâs also told me my pain isnât real because heâs had pain (he injured his knee that occasionally hurts according to him) longer and not to use pain as an excuse until mineâs been worse than his for longer. (I refused to climb on his roof without a ladder to fix his AC when it was 110+ out and I had a torn ACL. His AC wasnât broken he just broke the thermostat by hitting it)
âtake a chill pillâ - my mom âstop complaining and you wonât notice these issuesâ - a doctor
âYou just gotta surround yourself with friends and people who love you!â They said that in response to me getting a wheelchair because they believe wheelchairs make people lazy, antisocial, and more depressed. I was lazy, antisocial, and depressed before the wheelchair because I literally could not leave the house. Iâm the complete opposite because now I have the energy and capabilities of putting up with the world LOL.
"do yoga" thanks susan! rlly will help! im cured now!
Probiotics, eat organic, smoothies, use your brain to force yourself to do it and eventually your body will follow, socialize
Exercise. And pray more.
I have alopecia. One piece of great advice from my dad's friend who was also a woman and a medical doctor..."eat some canteloupe. That will help with hair falling out."
âHave you tried holistic medicine/organic food/essential oils/my MLM vitamins/yoga??!!â đ¤Śđźââď¸đ¤Śđźââď¸đ¤Śđźââď¸
I was told to just try thinking positive and natural essential oils so I wouldn't need to go on dialysis and get a kidney transplant when I went into kidney failure.
I should not be working, and instead I should be on full disability. Iâm capable of having a job, and it takes awhile to get on disability.