⚠️ ME/CFS: 5 Things NOT to say to someone with M.E. 🚫

This video dives into 5 things that ME/CFS sufferers do not want to hear.

[@fight4me747]

M.E. is more than Fatigue -20 symptoms people deal with *Must Watch*>>>>kzbin.info/www/bejne/n5qpdIWNmKmZfaM

[@saveyourselves5923]

Telling someone with m.e that they're lazy is like telling a paraplegic that they're not good at running

[@Ann963]

Telling someone with ME that they’re lazy is like telling a paraplegic that they’re lazy.

[@minahana1112]

You forgot one of the most common ones: why don't you try exercising more? have you tried yoga? and so on....explaining to people that taking a shower feels like climbing a mountain is exhausting, too

[@fight4me747]

ya thats a good one. Maybe I will do a part two. There are so many.

[@hdd1977m7]

YES 👏

[@lesliebblack]

Unless you have it or know someone well who has it…people have NO CLUE. I hate the term CFS because we all know fatigue is only a fraction of what this thing is. But THAT’S what people hear: fatigue. ME- Myalgic (muscle pain) Encephalomyelitis (swelling around the brain & spinal cord) is a more descriptive term, IMO.

[@lesliebblack]

When I was 1st diagnosed my best friend made an off hand comment “I’m too busy to get sick!” I think her comment was to illustrate how busy she is with 5 kids and her own business. But I can’t forget those words. I don’t have to tell you all how much this hurt me. And, around the same time, when I wasn’t nearly as ill as I am now, my own mother, a retired nurse, accused me of fabricating all this for attention (and I’m not a typical attention seeker). After 8 years she’s finally come round, but people who don’t take me seriously is more painful than the fibro pain!! 💔

[@abigailmcewan]

It’s depressing having ME/CFS! Of course we have depression. Thank you for highlighting these.

[@anniebalsbaugh2093]

Remember to, these awful hurtful words are said to the caregivers that are doing everything they can to help a loved one with ME, it's horrible

[@piper4352]

Thank you another great video. I know most healthy people don’t know (and how could they?) that developing ME/CFS results in a extended period of grief. Grief of the loss of their life as they knew it, most of their friends, their ability to work, and most importantly, the loss of their very identity. It changes you completely and for me, that was the most devastating loss of all. Being kind to anyone going through something like that should be a given. Another point, the words “I know how you feel” are very frustrating. I just politely and without anger quietly say “no, you don’t”. It helps to make people think about what they say without being confrontational. Like you say, no one tells a person dealing with lung cancer, MS, etc “I know how you feel”.

[@fight4me747]

The grief we deal with is such an underrated part of this illness.

[@KatyatheBlack]

I started to talk with one of my friends more- and they keep saying with good intent, “I know exactly how you feel”, “I feel the same way” “I think about __ all the time too”. It’s making my skin crawl! I don’t want to cut them down but at the same time I want to be like “you have had an active mono/Epstein-Barr infection and post viral fatigue for 3 years too? You have fibromyalgia too? You have Hashimotos too? You also feel bone crushing fatigue that makes you unable to talk, to stand, to work, shower, to do anything fucking normal in your life too? Because frankly, if not, then you have NO IDEA HOW I FEEL. “ But I also don’t want to drive away one of the last friends I have left.

[@ninahatfield]

I wonder sometimes when people say this whether they are very sick too, but with a moment's thought I realize that it's not the same because I'm talking to them between two of the 5-8 activities they do day after day after day.

[@lucysweeney8347]

So Right! Every word you say is true and you put it in such a relatable way.Thank you. Latest advice "You just need to Push Through"! Truly grateful though to the few precious people who DO understand and have taken the trouble to educate themselves.If anyone that is healthy and reading this wants to help someone with ME/CFS a home cooked casserole or favourite home cooked meal could be the very BEST Gift you could give a sufferer.

[@susana5052]

You’re spot on. I was a active, high functional, happy and outgoing person. That’s all gone, including all but 1 friend and my only adult son that has moved. I’m just sick of it all and what people say and I have heard all and more. Although now I won’t be silent anymore and it’s stressful…a bad thing for me. Now I tell them they have no clue and should keep their opinions to themselves and just I don’t LOOK or SOUND ill doesn’t mean I’m not feeling like utter crap. What I’m really sick and tired of his being ignored by the medical field. The only reason why they’re looking in to these illnesses is because of long Covid. They’re trying to cover their butts and just by accident, if we’re lucky, they might study people with CFS. Now after over 26 years the depression has set in. I’m getting worse with every passing day. So I’m thinking about going to Canada for their “policy” and final opinion. I’m not going to rot away or be found dead after a few weeks because the mailman has noticed the mailbox in too stuffed for anymore mail. Thank you for your videos.🙏🏻💖🙏🏻

[@kerryferreira4399]

The line I hate most is: don't worry, you'll get back to your own self soon enough. I was a professional dancer and my colleagues keep telling me I'll be back on the stage and I should be working on choreography for the future. Not only is it tiring, it's frustrating. I can't turn back the clock

[@cherylallis2458]

So many people don't understand that a person with severe ME doesn’t have the ability to prepare healthy food for themselves. I have never had anyone (other than my family caretakers) who says I need to eat healthy offer to prepare meals for me.

[@scotscub76]

After 14 years I just accept everyone has their opinion. The more I care less what people think the more free I feel. It takes practise though. Thanks so much for raising awareness. Love from Scotland.

[@kimbykimbers3750]

Thank You for this, the only person who completely understands is my Husband in my case. He is amazingly supportive and can take one look at me and know I am crashing. This condition has robbed me of who I was. I’m still breathing so that’s a good thing ❤ thank You again x

[@AmbyJeans]

Same!

[@catchappie]

"You just need to get more exercise." Told to me by my PCP who claims he has a loved on with CFS. (Yes, I need a new PCP.) "Your bloodwork is normal. Everything looks good!" Told to me by multiple docs. I just move on someone more helpful.

[@loispow6883]

I have been told my senory issues that come and go are just my anxiety, i used to have anxiety and worked in mental health so I know the difference. I hate being told that i just sleep too much or I just need to get my fitness up or it is all in my diet without knowing what my diet is or I am just depressed, or but you were good the other day like I was cured and now they are dissapointed I am not, or if you just lost wieght you would feel better. Thank you for these videos.

[@Luv2782]

Thank you for making this video! I’ve been asked a couple of times if I am simply unmotivated…real slap in the face. Motivation is partly the problem for me, in being too motivated to want to take things on when I have moments of feeling good, only to crash soon after.

[@alysmarcus7747]

the doctor said , but you walked in here. - ya, and i'll be in bed for a week after my husband fights for a wheel chair for me to get out of this building . Exhaustion - what do you mean 'chew food' - I find that i'm way more saracastic than i like - but it's also the only thing it feels like people hear. Lazy- or you should do yoga or . . . what ever the 'new fix' is. Seriously, i'd put that energy into chewing food. You've mentioned what i have always noticed - The person who works 3 jobs and volunteers - gets ME. I'd love to know if there is a connection.I cold : pneumonia for 4 months. I'm 62 years old and ride my bike in the winter - - so many times i wonder , what could i accomplish if i wasn't sick? I really like your videos , i just found you like yesterday . . . thank you for being straight forward and real.

[@fight4me747]

Some Doctors are the worst.

[@anne-no2ic]

After 35 years of this I only push myself too hard when it is an emergency. I go to the Y 5 days a week and the few hours I do water walking and whatever my body allows do help. I no longer tell myself stop being so lazy We blame ourselves. We forhive others we should not blame ourselves because our brains are oversenditized. The pain is real the profound fatigue when you can not take anothet step and want to drop to the sidewalk and never get up is real pain and exhaustion. It evidently is the hypothalmous. First time I read that is this morning. I researched it when I first got it 35 yrars ago.. I only started to catch up.on new research. Years ago people all thought people were faking or pscho cases imagination, malingering, lazy I am told i am a mighty fine looking specimen and am flattered daily because I look vibrant and curious. Even with brain fog I look very alive to my surroundings. When I do go out daily I am at my strongest for that day. It might only last for an hour. Then I retreat to my bed, I can not keep my head from drooping as if my neck was a puppets. Thank you for talking about what you learned that helped. No one who hasn't experienced it CAN understand.

[@jacobclark6942]

I just don't tell people I'm sick. My family (husband and 3 kids) and I just keep it to ourselves and live our life. We have to carefully balance what we do socially. Mostly we don't spend a lot of time in public and my husband is a saint and helps so much at home and picks up the slack when I need to rest.

[@catchappie]

Please tell us more about food, diet, nutrition. Also, it's not all in anyone's head. If anyone suggests somatization or conversion disorder or hypochondriasis or an overactive imagination, run away and find someone who is compassionate and willing to be supportive. You are not a crazy person because you have this tangled ball of symptoms. It just means that medicine and science have not caught up to reality, especially to our reality. Things for science are moving in the right direction.

[@arlenefisher1164]

Dr. Jarred Younger at the U of Alabama is doing research on ME/CFS. I like his videos.

[@Cruell_aa]

My absolute favourite which is similar to your bonus one… “Mind over matter” 😂

[@briony_rose97]

I have struggled for ten years. Two weeks ago was the first time a Dr has said to me chronic fatigue syndrome. People who are close to me who should be supportive and concerned deem me lazy and "likes to collect badges" because i have many diagnosis. To finally have a name for it is amazing but I still feel like maybe I am just lazy even though I work 8 hours and can then not bush my teeth, eat or wash myself for the rest of the week. People do not understand how hurtful they can be

[@thesmallenglishcountrygard7095]

This is the best video on ME I have ever seen and a very big thank you for making it! As an ME sufferer of 25 years I can certainly say I have experienced all of these comments at one time or another when dealing with invisible symptoms. I wish you all the love in the world and hope you are doing well.

[@fight4me747]

Sorry you have experienced all of these and thanks for your kind words.

[@abigailmcewan]

I absolutely hate when people say ‘just take some vitamin C’ or ‘ just get some acupuncture’.

[@fight4me747]

I've def had people tell me this before lol

[@user-ef6rg3rm5i]

Thank you so much for all that you do! 🙏✨ I’ve just heard from one of my best friends all these points about my condition. People tend to think that they know better what other feel… It sucks! Explaining something after the words like “It’s all in your head” takes much energy, that you already almost don’t have. I prefer not to communicate more with such people, because you can’t trust them anymore, you can’t be relaxed and be yourself in their company. They don’t believe that you feel bad, draw the picture in their head of how to have great time together, go in nightclub and so on. And when you don’t meet their expectations (because you really don’t have energy), they get disappointed with you and sometimes even angry… Yes, you had much energy for parties - but it was many years ago. And it doesn’t mean that you don’t want to have fun, - you just can’t. And if the person just doesn’t want even to hear you - it makes all even worse. I have emotional and mental exhaustions after such “simple” interactions (in addition to physical, of course). Too high price… Thank you very much. You are awesome! 🙌 I feel not alone thanks to you and your work! 🙏😌

[@jazzsjourney-2540]

Hello! I am a 40 year ME/CFS sufferer and I am so happy you are producing these very educational videos! Two of my least favorite comments are "you sure you're not exaggerating?" And, my other top favorite is "do you have any interests or hobbies?" Keep up the fight!!

[@fight4me747]

Thanks for watching! Yes, those are two undesirable comments.

[@cherylallis2458]

When people ask me about my hobby I say - reading medical journals to try to find something that might help me get well. Before I got sick, I didn't have time for hobbies- running my own business, raising 4 kids, etc. (I used to not be able to read- words would swim around on the page, on days when the words stayed still, I would read the beginning of the sentence, and by the time I got to the end of the sentence I would have forgotten what the first part of the sentence said.)

[@jaynebennett8398]

Thank you for speaking out and explaining each one of these so well

[@fight4me747]

My pleasure!

[@sparrow646]

Thank you for making these. It so validating to listen to you

[@Kjersti_]

Great video! Thank you for talking about some of the rude and unkind things people say.

[@janetscully3337]

I've stopped talking about it and mostly I just withdraw to keep my own energy. Ontario Disability failed FM/CFM victims and others with invisible disabilities by only recognizing visible disabilities. Example is extreme loud club music used at my Aquafit classes plus yelling at the end to congratulate each other. Yelling jolts my body like a terror. While I use earplugs and do everything I can to help myself, it's awful to love like this. Cognitive abilities were hit hard. Not just type A but sensitive people who had undiagnosed central nervous system challenges and sleep disorders. It can and will get worse if you don't back off and set serious boundaries. I also stopped talking about it. I've lost family and friends, too. I had to accept the loss and make radical changes to my life. I feel sick every day of my life. Aquafit is my drug of choice as long as I manage the loud noise.

[@raymondgilmour1533]

Exhausted….I say “ Severe debility”

[@Ann963]

I say, “so tired it hurts”

[@hellokittydoll2794]

Thank you for this video! It's so nice to not feel so alone here. I've been so anxious, stressed, and just nervous for my future life and what that will look like. How I'll take care of myself financially and physically in the future. I'm just grateful that some people out there get it.

[@lindaharris1941]

I had a doctor say to my husband that it was all in my head. He couldn't even say it to my face. And people in our church told my husband that I just needed to get out more. Yeah, right.

[@fight4me747]

That sounds like a terrible experience

[@dianafields6475]

Maybe it's just anxiety, or you gotta learn to push through... these are 2 I've heard a lot lately

[@fayelogsdon-heywood2472]

I have had IBS most of my life, so at times pretty intense symptoms. I believe that I have had a gradual onset of ME/CFS. I had so many symptoms. I just had no knowledge of CFS until about 22-weeks ago I started getting really sick, much more gut issues…quite painful. I’ve seen a slew of doctors. One doctor said, I think your weight is most of your problem to are you wearing your pants too tight to you have a somatic disorder. From a family member expressing concern as to how this is negatively effecting your spouse. This brings about feelings of guilt. Life is crazy for me, but I have Jesus as My Savior. He gives me the strength I need to get through each and everyday. Just found your channel today 7/21/23. Looking forward to hearing more of your videos.

[@jennifertehanisarreal]

So grateful I found your channel. Even when it’s through the internet, community and solidarity are so healing in the “normalization” of the experience - we are all in this together. Thank you 🫶🏼

[@fight4me747]

Thanks for your comment. This was my goal, when I started the channel. I remember how lonely it was when I first got sick.

[@andreakeenan6168]

Thank you so much for this video. So very true and so useful. It would be really helpful if you could do a video on explaining to loved ones about Post Exertional Malaise as I think people find it hard to understand how you look fine one day (not understanding the effort it took for you to get there and the pay back the next day). Thanks for all you do.

[@fight4me747]

Hey there, I did an interview with a sports medicine doctor who speaks on PEM. That may help.

[@andreakeenan6168]

@@fight4me747 Thank you so much. I will watch that.

[@seascape1059]

Thank you for your videos, they are super helpful especially having been newly diagnosed.

[@mazeymay960]

When I saw your video on IBS and gut issues, I became depressed… Not because of what you said because it was just a reminder, and I’m in denial and I’m constantly watching my diet. Can you remind me what probiotic you use again? And how do you say stay so goddamn positive?

[@fight4me747]

I take Visbiome. Its strong, so talk to a Doc before taking it. Being positive is not always easy for me. This illness beats me up just like everyone else.

[@susanturner139]

I am so proud of you, Johnny! Another comment I used to get was why don’t you just go out more? You need to do more! Ha ha ha! Wouldn’t I LOVE to! And I’m not talking about going out for doctor appointments, which is all I did before the pandemic! I love that doctor appointments are often on zoom now! Much easier!!!

[@sadielenton8488]

Thank you for your videos, they are so heartfelt and so useful to play to family members when I can't find the right words to explain what it's like. Would you be able to do that 'part 2' please and add in my personally most hated one of "you need to get up earlier"? I feel so rough and in pain in the mornings, I am almost suicidal. I get insomnia regularly and can go without sleeping for 3 or 4 nights. I don't sleep during the day (like my partner does) or have days where I laze in bed all day due to illness, lack of sleep, low mood, or hangover (like my housemate does), yet they both regularly criticise me for not getting up til between 8am and 11am. It is so upsetting! It feels so unfair and they don't understand.

[@fight4me747]

I have really bad insomnia so I can def relate. If I do a part 2, I will add it =)

[@lesliebblack]

Yes, I’ve had family & friends suggest I ‘try’ different sleep schedules. I have no control over when I’m able to sleep or not. I have periods where I am so tired I’m delirious, then periods where I crash & can’t wake up for 36 hrs. My partner feeds me my meds & sips of water, walks me to the bathroom-after which I have no recollection. Another thing my best friend said early on in my illness 10 years ago, when I was trying to explain my illness & grief over having to give up my beloved job as a cancer nurse, among other things…”I’m too busy to get sick!” Now she understands my illness, but I still can’t get those words out of my head. I used to be a very busy woman, wife, mom, nurse, volunteer. 10 yrs later I’m still crushed over losing almost everything in my life I love. I’m blessed to have a devoted partner, 2 adult children who support me, & a handful of friends who are still here for me. I realize I’m luckier than many people with ME/CFS. Great video. I agree a part 2 would be helpful. Thanks.

[@clairejohnson6522]

@@lesliebblack ❤

[@visionvixxen]

I feel likeI have to hide from people after two or three days of them seeing me need several hours to get up after 10… drink tea all day to stay awake and unable to sleep at night. I understand that they do t understand but I wish they understood that I’ve been trying to change all this and hopeless that I can’t.

[@Lyn_Marie_]

I’m SO HAPPY I found your channel !! Today I’ll be binge watching !

[@dianafields6475]

So far this is the only channel I've found I really trust and believe he understands Myalgic Encephalomyelitis. So many are pushing "cures" or other things (I've seen some say just push through or exercise, which I did BEFORE I knew what was wrong, and now I'm moderate instead of mild).

[@danieladanielsen]

I would love to get in touch with other M.E. sufferers

[@chrislester7316]

Just wanted to say thankyou to you for taking time to make this video... My favorite one is what do you have.? Me/cfs!... Oh yes I've heard of that that's that yuppie flu!!! 🙄.

[@fight4me747]

People still call it the yuppie flu? wow

[@chrislester7316]

@@fight4me747 I know right... Like I could imagine this torture all in my head.

[@tashyac4310]

You’re the best at explaining this, thank you

[@mumsow]

I only let people see me after I've battled through to making myself look as ok as I can... maybe that's my mistake? I get so fed up when people say " well, you look ok..." The other day after I'd explained I'd got CFS someone said " yeah I get tired too, you have to make sure you get to bed early" 🤯

[@andeebee2530]

Thank you! I love your videos and am so glad to see you back. Hearing these type of things from people sometimes makes me feel so sad and isolated. I think most people have no idea what it is like to have ME even when it is explained to them. The very few that do try to understand are the gems I keep around me.

[@Fiawordweaver]

Thank you. This is so validating for me with this condition.

[@Zebo262]

I do struggle to sleep at all at times which can mean I totally lose any semblance of a routine or normal day, I get tired much quicker than people usually do...... Anywhere between in the moment of doing something to the end of the same day, the longest I've slept in a day is 20 hours, the longest it's taken to reach anywhere resembling recovering from something is sleeping on and off constantly all day and night for 2-3 weeks, I have months recovery time from illnesses including when I had a virus ontop of the ME/CFS which was bad from pushing to do more than I should have, and that's not including everything else I experience. To say it's difficult (commenting on my own description), just doesn't fully encompass it as an experience, or the huge changes to your normal life and the lifelong changes you have to consider making once you get past all that other stuff. One of the most noticeable things in my experience, is people talking to me about it as though I should know exactly how it works and how to fix it now. If the experts and specialist don't know, how am I supposed to know how to handle this illness I've never known of or experienced before until now. The other most notable thing is being second guessed as to how ill I actually am, because some days (more in the past than currently) I appeared to be doing better, so it can't be as bad as I'm saying. Really frustrating, when you live with something that doesn't have a set pattern of presenting. But despite all of that, I do carry hope that I can reclaim some things back, with every day I'm learning what happens to me and how it works as best I can, and I'm trying to learn how to make progress (just really really gradual and very slowly implemented, which isn't normally how I or my body work so that's been difficult to balance), and I'm learning to be more forward about what I can and cannot do and refusing to be pushed or hurried by others that don't understand. Because "stabilising myself"/ baseline is good for my health and progress, so that has to come first for me to have progressed in the future. Thank you for your awesome video, and all the others you have made 💙💙💙💙

[@mumsow]

Your videos are absolutely brilliant. Thanks so much 💜

[@tawnisboxtalk]

Ya i have a history of depression and anxiety.. i also know the difference. I try meds just to try to quiet people.. after 13 different ones on day 9 or 10 i want to jump in front of a train. Like i say you can't medicate a problem thats not there...

[@askew358]

What is ME?

[@fight4me747]

Myalgic Encephalomyelitis. Chronic Fatigue is a symptom

[@Nightshaders]

Are all people with ME/CFS affected to the level where they can't work, or are there different levels of severity? Can it go into remission?

[@fight4me747]

Check out the community tab, there are poles there about working. But based on what I've seen, the vast majority of people cannot work. And some do go into remission.

[@cherylallis2458]

I was in full remission once for 6 months. Then I relapsed and was much worse than before. 5 years bedridden, dementia, darkened, quiet room required, feeling like I might die and hoping it would happen soon. I have improved since then, but I still fluctuate between bedbound and housebound.

[@brobinson8614]

Can you please make a shorter version as this is too long to send to friends as a lot of waffle (sorry no offence as I agree with what you say) we just need a concise firm to the point version too for those friends that switch off too fast

[@Anchor7]

I think its vital for your friends to hear the reasons why these 5 things shouldn’t be said. At least thats been my experience.

[@brobinson8614]

@@Anchor7 yes I mean that is still needed into a shorter video, just less waffle, if that makes sense. The video was good as explains the issues, unfortunately for sharing purposes, most my friends would drift off. It's the fault of the internet age not the actual video.

[@Anchor7]

@@brobinson8614 i hear ya

[@valzena]

The you need to think positive. You need a hobby. You need to get out. It especially hurts when you have explained over and over again all of what you said in this video.

[@Blubes23]

I have yet to hear someone talking about ME patients hanging out or being friends with other people with ME. I have noticed that just because something works for them they think their sitting on the cure. Or someone has no respect for the others time, and only put her og his own struggles at center when going out or trying to plan something… I struggle a little with this. That it seem to be a contest within the sickness 🥹🥹🙄🙄