⭐️5 Things NOT to say to people with M.E./CFS part 2⭐️
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- Опубликовано: 5 сен 2024
- M.E./CFS is a complex illness. It can be hard to navigate. This videos is for people who have someone in their life with ME and you may be looking to learn how to better communicate with people.
I’ve had ME/CFS since 1990 and have heard every annoying comment imaginable. From church members telling me to just forget myself and serve others, to athletic friends insisting increased exercise will cure me. Some people have accused me of faking illness for attention or to shirk adult responsibilities. Or some have probed me psychologically asking me why I “chose” to be sick and what was I “getting from it.” Others criticized my self care attempts, claiming that by predicting that an activity would put me into a flare I was “ setting myself up” to feel sick.
There has been literally nothing I could do or say to gain understanding or support.
It’s indeed been a very solitary
road.
Finding videos now like this one that are raising understanding and awareness are fantastic.
Thank you so very much. You provide desperately needed support and education. Bless you!
So sorry for this I can identify with all you say its so much worse when it's from people who attend church so little compassion
Our lives seem to be parallels, except I've basically withdrawn from people. I haven't the energy anymore to deal with all the well-meaning but judgmental comments anymore.
Hi there, I relate 100%. Please read Dr St Amands book about fibro. It's the same disease. It's caused by phosphate retention and can be reversed. Dr St Amand saved my life. Feel free to reach out ❤
I don't have energy to be angry or upset anymore. It's weird but I almost like this new me. When people say to me: "Aren't you better yet?" like I have flu or something, or compare how much they do to how much I do in a day, I have to stop myself mid-angry-thought and remember that there was a time when I didn't understand either.
This happened to me lately. I don't have the energy to explain or recover relationships. No energy
Housebound alot of the time and this is the reaction,From a nurse:"I know someone with that,they go marathon running" From a GP:"I recommend exercise" From a person learning i have this:"Lucky you being in bed most of the time"From a taxi driver bringing me back with my shopping and finding out i have M.E and the longest without being well enough to go outside was for 3 months:"That can't be healthy staying in for 3 months.Why don't you get a bus pass and you can ride around on the bus all day?" The last one actually had me in hysterics when i got home and i was crying from laughing so much.The stupidity of some people is overwhelming!😨😊🇬🇧
Sorry to say I can well relate to this being told "well atleast it's not MS and your not in a wheelchair "
@@janettrobinson7072 Yes Janett , Also," You haven't got M.S" and I've been told in a condescending, belittling tone," Well it could be worse, you could have Cancer." Can't think of another illness where you are spoken down too and made to feel that this illness is less than.Personally i think we are all warriors with this illness as not only do we have to fight IT but also other people's ignorance.Peace🕊
I should do that with my bus pass 🤣🤣🤣 unreal
This is my fave..."Other people have it so much worse than you."
OMG that is so true!
I have M.E. and long Covid and ITP and anaemia and when someone says they can relate or they say yes I know how it feels to feel tired, it breaks me. Something inside me bubbles and I try to suppress it. There’s a difference between adrenal fatigue, exhaustion from life and the sheer fatigue that means you don’t have the energy to use your brain or breath. When every once of your being is being used to focus on keeping you alive, that’s not being tired. That’s living in hell. Thank you for raising this and helping to make it easier for people to understand that this illness dictates and ruins all your future plans, changes your life and everything you once knew it was. Thank you for realising we have to grieve for the loss of our lives. All who are suffering with this you are not alone and my heart is with you all xoxo
It makes me very upset and angry when people tell me that they know exactly how I feel or that they must have the same thing because they, too are tired. And you see them working full time, doing sports, going to parties, enjoying family time, drinking and eating what they want, travelling, going on holidays.... and all of that is completely unavailable to you. But they know how you feel of course.
I used to get mad, now I just realize its often sheer ignorance. They don't mean to be hurtful...Then you have the A holes who are doing it to be mean.
truth
I read a medical article explaining ME and brain inflammation. I gave to my military father so he could understand my hidden sickness. He read it and looked at me and said,"You dont have this." I was always running, biking,swimming in my younger years. Eventually he acknowledged I was right.
“I know how you feel” is for me one of the worst comments I get, it feels so dismissive. Trying to relate is one thing, but nobody would say those words to a person fighting cancer, MS, cardiac issues or pretty much any other health issue. When I hear those words, I just quietly answer “no you don’t”, without sounding angry or upset. The shocked looks I get from my reply gives me hope that they will better understand that it was an inappropriate and insensitive comment.
And the comments “you should just…” are victim blaming. That it’s our fault because we’re choosing not to push through, or to exercise , or to eat better, etc. I’ve tried them all, I would do anything to get better. Eating better, other than cutting out all the new food allergies that I’ve developed, has not helped me at all. And pushing through, more exercise and those types of things are what made me as sick as I am today.
I’ve never encountered the ”get a man” comment, thank heavens. I don’t think I’d respond politely to that one, lol.
My thoughts exactly! We are just a I’ll as people fighting MS or types of cancer, but we are treated with ridicule. And then when we stand up for ourselves, they act like we are being rude, and have some nerve to stand up for ourselves🙄.
You did leave out one thing. Being kind and not saying those things to yourself. I was so angry at what I lost, called myself lazy and worthless, still try to push through sometimes but I'm getting a little better at accepting what have become my limits.
I was told I am so depressing because I mention my illness and symptoms. I am miserable alot especially when I relapse, it is near impossible to be happy. Mother in law told me to exercise more. Was told for years to push myself to carry on with life when I was struggling so much nearly fainting when I went out and crying to strangers. People are so ignorant, sick to death explaineing it after 6 years.
"You don't look sick to me."
I was dx in 1990. But I did not understand the disease until I saw “ Unrested”’in 2022. Oh, yes that is exactly what I have had for since 1985! So now I can easily claim a membership, since I recognize all the effects of the disease. Personally, unless someone has viewed the film, how could they understand. ( Especially the part where” Every time I see you, you seem fine.” And the times you do not see me? )Watch “ Unrested”.
Hi I can't thank you enough for the timing of this video I have severe CFS I am bed bound along with severe pain and other things that have come along with having this horrible condition. I have done everything to try to get better there's nothing I haven't done holistically non-holistically but doctors don't do anything cuz there's nothing really you can do for it but I've tried everything. I've spent thousands and thousands and thousands of dollars trying to get well. And I've heard everything you shared today. And I told myself, that's the worst part everything you said today not giving myself a break and just being way more compassionate when I'm crashing. Recently I got into something called neuroplasticity or mind body healing and there's a channel on RUclips called pain free you. And the guy it's insidious because it sounds so great like you can get better, this is not real, this is coming from the brain not the body. And I started dealing with some of his let's call them mental exercises or processes and I'm really glad something told me that something was not right about this because I found out I have a tumor on my thyroid and he says that all symptoms All symptoms he says are perceived Danger and then the brain creates symptoms. I stopped listening as of today because when I heard this video it reminded me that this is real what I'm going through it is not in my head. Thank you so much you don't know what you've done for me today and on. Happy New Year
Are you taking supplements to help your ATP cycle, like acetyl-carnitine? This the one that got me on my feet a bit. Look at supplements on Amazon or have someone help you. The one above that I take is very good. Taken 3 times a day, 750 mg, after about 2 weeks something felt better and it increased. If you do this, please be very self protective and spend hour energy carefully. The doctors in the CFS clinic at Stanford are recommending this.
@@anitahaviland3036 hi Annie. Thank you so much for your awesome reply what is ATP stand for I've never heard of that can you please let me know and I'll check into what you were talking about thank you
0:24 “Just work out!”
1:34 “You just need a spouse”
3:08 “Just eat better”
4:22 “I get that too! I know how you feel”
6:11 “Just push through!”
I suspect “You just need a spouse” may be related to “You need to get laid” treatments for hysteria
Yeah, a lot of women have been told that. Its absurd.
@@fight4me747 yes! I was specifically referring to hysterical paroxysm (orgasm) as a treatment to patients by their doctors, or if there was a husband they may have been advised by the doctors? (Also shows how good can be salvaged from dark histories: the only good thing out of hysteria is the invention of the vibrator😅)
“Sir, it is medically necessary that you bring your wife to climax or she will need to be institutionalized.” 🙃💀🙄
You forgot 'do you have a therapist?'
I agree with number 4. I know that people are just trying to empathize but it can come off as them not actually understanding what you are going through. They might be comparing their fatigue from a long week of work to your crippling fatigue that results in you not being able to eat a meal without help/adaptations. I think this is good advice when talking to anyone with a chronic illness. IMO there is a way where you can use shared experience to create empathy. For example my best friend had a drug reaction where she experienced some of the symptoms I have ever day. She told me that she had a tiny taste of what I go through and it was very scary. She said she could not imagine having to cope with that all the time and that I am a strong person. I felt understood in that moment.
Your so helpful within our community and for the people who care for us. To be honest I wouldn't have understood people who looked okish but had Chronic illness......how wrong was I. People like yourself, fb groups and linking with sufferers have helped me accept and understand how I am so much. I really don't care anymore what people say, I have lost friends, a great career and my life that I built up through great diversity coming from a difficult childhood. I had it all then I became unwell and other illnesses have added into the mix as the years have gone on like gut issues, auto immune illnesses, Fibromyalgia etc. I have my routine now with my loved ones who care for me and that's my life with little bits of craft hobbies I picked up throughout all this and it suits me just fine. My mental health took a huge dip but now as I say with the help of people like yourself I have changed my mindset and I'm in a happier place and appreciate the little things in life like having a shower, watching the birds eat from my garden, watching my Grandchildren laugh. Some people don't notice these things but we do and that is a gift. Thank you so much for your input my friend. Take care of you. Xxxxxxxx
Yes I get upset when people say “I’m tired too”
I hate when people say that “oh I relate, I’m tired too” because it demonstrates a complete misunderstanding of the severity of even mild me/cfs and it inadvertently downplays our symptoms. Unless a person has been SERIOUSLY ill, they’ve never felt most of these symptoms before. People need to understand that they really can’t get this. They can still be compassionate while realizing that what we’re experiencing is like nothing they’ve ever felt
I hear this all the time from my evil sister Just keep treating your family like this and pushing everybody away and one day nobody's going to want anything to do with you you will be totally left alone in this world. I want to say to her I'm already alone.
It sounds like we have similar sisters.
Wow,How caring and considerate! Do you know anything about Narcissism?Not saying that is definitely what you are dealing with but The Little Shamen and Dr Ramani etc on RUclips and The Crappy Childhood Fairy may prove insightful.I've had abuse all my life and I'm certain that is why i have M.E/Fibromyalgia etc.Just wondering about you.Pamela,you deserve better.Had to say that and comment.❤🕊
People don’t understand why I isolate either 😔 my family used to get mad at me until they finally started understanding from listening to me better that I’m truly sick
When people try to relate to me it’s extremely upsetting.I often get really angry. 😂 I’m okay if someone who has another illness such as MS or a type of cancer tries to relate, but when a perfectly healthy person says they get being in pain and exhausted 24/7, I feel your belittling me.
Probably because I’m young…I get a lot of belittling. I got CFS from a buildup of many different types of bacteria that have been building since I was a toddler. My doctor has been naturally killing the bacteria, and when I tell people this they say, “well you know you have good bacteria you shouldn’t kill that.” Im not five,I’m old enough to be in college. I’m not stupid.😂 People love to treat me like I’m a little kid, and act like I have no idea what’s going on. They think because I’m young, they can tell me what I need to do to get better, and are often very disrespectful. The best thing you could say to me is OKAY. Yes I understand you have this illness.I believe you, and Im going to treat you with respect.Just say okay, and speak to me like you would any other adult.
Another great video!❤️
I felt like that when I was young too, but sadly, people continue behaving that way even when you're older. The belittling and doubt continue. That being said, as awareness grows, its getting better. Hopefully by the time you're my age its no longer a thing.
One item that was asked of me by a family member was don’t you have any friends you could talk to? I couldn’t answer. In my head I was thinking, I thought you were my friend. So I don’t feel comfortable reaching out to that person anymore. Having these videos helps me feel not so alone and isolated. Thank you.
I am very lucky. I never had any of this kind of comment. I can't imagine how much difficulty this can add.
Guess I can stop looking for Prince Charming then!!
Joking aside, I was prescribed GET by my (then) paediatrician. I followed the programme and developed many debilitating symptoms, hypotension (70/38) and bradycardia (40bpm).
Im sorry that you were harmed by GET. Many people have had that experience. PS: You will find Prince Charming eventually. =)
A colleague said to me the other day “we all get brain fog”
I’m happy for him that he has absolutely no clue but I’ll be staying away from him in future.
I had a spouse. He railed at me for being sick all the time - like it was a life style choice. His (and my former best friend's as well) attitude and lack of support only made me feel worse. Having him out of my life has helped me emotionally at the very least but financially it was devastating. I cut ties to the former BF. My GP told me to exercise more which flattened me. I've been ill for decades, just retired five years ago. The battle doesn't get easier but I don't have to force myself out the door to teach all day at the other end of the county. I can stay put and take care.
This is a great channel!
Thanks Julie.
Severely disabled and ill for 15 + years in ME/CFs, POTS, h-EDS, neck instability, Chiari, mast cells problems etc. (Dignosed.)
Everyday incl. nights are a real never ending battle with constant torture in brain, skull, body. I have better days - that doesn’t mean they are neutral and I am fine those days (it’s just less torture).
Every time I have those “better” days I want to and need to do things that otherwise pile up, so I might look like I’m doing much better those days. My mother always takes that as I’m recovering and saying things like “Isn’t it nice that you are so much better and getting better?!”, “Doesn’t it feel good to be able to do things?”
I know she wants to encourage me and see things on the bright side and focus on the positive. It’s just that she doesn’t seem to understand that it literally feels like I’m dying in several ways when I do things (it’s just a day that I’m actually able to push myself through the torture without the system being completely crashed. It hurts to try to think and force the brain to try to d
Brain stop can’t finish sentence
I have been battling this and also fibromyalgia around 30 years, add sickly children, sleep deprivation due to many nights up caring for them on my own. I have done everthing possable to manage this i feel like crying. Used to be a social person, enjoyed singing dancing gardening, now i cant do any of this and due to noise sensitivity and issues with bowel abd bladder is not nice to deal with out in public. I have lost everthing i Used to enjoy. Now its affecting my throat and talking is a strian. 😕 even gentle walks cause flares. Its definitely a lonely existence.
Its been a long journey but my M.E. is possible MS. I have just had a bunch of tests to rule out other stuff but now going in for an MS brain scan.
I hope it goes well.
How do they find it in the brain???
“Well, you look fine” is one of my faves. 😆 how do you respond to that? Uh, thanks?
Pretty much my response lol
Last time a lady said it to me I looked her dead in the eye and said "hummm, u don't LOOK stupid, but looks can be deceiving".
Years ago when I first began having problems I went to doctors and they said everyone of these things to me (two different doctors) and I almost thought if I said I had PMS they'd tell me they had that too. I got tired of being looked at like I was crazy or just trying to get drugs so I don't go to doctors anymore.
Thank you so much for doing this! All I can do is share on my FB. And I do.
I think the worst one for me was being among older women complaining about minor ailments and saying to me 'you are young and energetic, you don't understand how it is to live in a body with problems'. I WISH I didn't know. I'm 26 and feel middleaged most of the time. On top of that there were at least two of the women that knew about my fatigue problems.
The only time #4 is appropriate is if the person saying it has ME/CFS (or something similar like fibro or MS). Then it’s supportive and comforting.
I do actually train, as I’ve been an athlete and have trained for 28yrs. I’m not giving that up without a fight and that’s entirely my choice, even though I’ve been told that it’s controversial as is the fact that I’ve got ME through burnout. My tenacity can work against me, especially with TypeA personality;But I’m still learning day by day and consider myself lucky in many ways, but gosh the level of ignorance with this condition is quite incredulous + it isn’t one size fits all. More than anything, I hate being told that I’m tired. Fatigue is bone aching exhaustion, not tiredness. Forgive the rant. Thank you from the UK for your videos 🙏
Whenever we push through we push ourselves into a crash and end up in bed for days and sometimes weeks. I’ve heard it all before from dr’s too. Exersise more. I need to have my hips replaced and the orthopedic dr wants me to strengthen the muscles around my hips in preparation for surgery. I have a very kind and caring physical therapist who gives me exercises i can do in bed when i can do them. Don’t judge us until you’ve been in our shoes. I don’t say walk a mile cuz we can no longer walk a mile.
this content is awesome. thank you
being told if i 'build my muscles' - when i was actually told by a doctor not to lift weight - BUT the worst : I know how you feel . nope, you don't - i lost my life and i'm hanging around to see the empty spot. no, you don't know what that is like.
Thank you, Thank You, THANK YOU! The more of your videos I watch, the more impressed I am with the information you have collected, and the way you present the information. People are so generous with their sharing. Is there a place where I can sort through videos or search your catalogue?
Hello, thanks for the compliment. Yes, you can go to the videos section of the channel and you will see all 60+ videos. www.youtube.com/@fight4me747/videos
@@fight4me747 I've been using that link and going through them all but I've specifically been looking for references linked to food, nutrition, and diet. You mention it in general but I'm looking for a link or reference that I can study so I can check my diet. And THANK YOU for being so responsive. I'm a bit overwhelmed trying to take in all the information at once and you have so much to offer. I appreciate you humble and supportive manner. You're on a mission and I am thirsty at the well. Your online demeanor very reassuring and I am grateful for the shepherding you are doing. And... do you have (I'm sure you do) an idea on where I should turn for food-nutrition-diet information? You are a missionary into the deepest, most remote village of our unique and isolated tribe. You have no idea of the impact you are making on thousands of lives.
I absolutely worked out and would crash and I got progressively worse - I never recovered. A study in UK proved that people who never recovered had a trauma and didn't rest enough; i found this the hardest to deal with, more than ME because i know I could have been so much bettet.
How about “ but you look great!!!”
Check out part 1 😀
❤❤❤
I know how you feel. No. You. Don’t.
How do you describe ME to someone?
I honestly don't even try to anymore. The circle I keep understands, anyone else I tend not to waste energy on.
Sound quality really bad on this video, for some reason. Almost impossible to hear.
Hello, have you tried turning up the volume within youtube? Works fine on my devices
Is there a link to part 1?
95% of it Stachybotrys mold. The 5% is a bad location. Look up Erik Johnson CFS/ME lake Tahoe 1986
At least you don't have MS. Stop complaining... Heard it all
😯