How to deal with people who DON’T UNDERSTAND your CHRONIC ILLNESS My experience with CHRONIC FATIGUE
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- เผยแพร่เมื่อ 1 ต.ค. 2024
- In this video I discuss how to deal with people that do not understand your chronic illness and therefore expect unreasonable things from you or treat you unfairly because of a chronic illness. I also share experiences I’ve had where people actively make my life difficult because of their inability to understand or believe in my illness.
My name is Elinor, I am a 21-year-old sociology student who has been living with ME/CFS for 5 years and has recently started making TH-cam Videos about my experience!
This video does not necessarily reflect everyone's experience with ME/CFS because we are all different and have different experiences. This is because ME/CFS can be different than I have experienced and also each person’s situation will be different and therefore each person’s story will be different!
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This really broke my heart hearing this.
I'm currently going through a very similar thing. And nobody knows how hard I'm pushing.
You got this! Remember to rest and be kind to yourself!
We know babes. Although nobody has the same experience, I promise you there are so many people in the CI/Medical community that feel the same way.
Truth is, the hardest thing to accept is that a life of CI is a life full of ups and downs. The cheesiest thing for me to say is that you’ll appreciate the ups more because of the downs, but it’s so true.
I may not know you, but I see you and I know you’re in a constant battle with your body. I know as someone with my own illness that it can feel so lonely and rough sometimes but I promise you’re not as alone as you think you are ❤ sending love stranger :)
It's quite difficult being a young man in his mid twenties who does not look ill.. but very much is. I've had "friends" tell me I'm lazy and want to live off the system. I've had people try to tell me my main problem is my attitude that started before my illness (it's genetic. Born with it. Always been there).
I've had people mock my fatigue. Compare me to some guy at their job who has cancer but keeps working! Oh and he's 62!.. Yeah whatever. Go on about how I could have been trained this whole time and should at least be working from home. People don't get it, and they don't care to. Their legs work fine. They can stand up without passing out. They aren't in pain 24/7. Yet still, I hope they never do understand because I would not wish this on anyone.
You get to a point where you just don't want to talk with people anymore.
Do you sometimes feel guilty when you hear about those 62 yr olds with cancer, ppl say this stuff all the time and I start to think I'm. Weak and I'm choosing to miss months of Uni and having to catch up. And do extra work in less time whilst being in constant pain. With less help then everyone else. It's like people are gaslighting me into underestimating my own pain
@@AbduRahman02yes!! I do this all the time. I question myself so much. I think Maybe I can do just as much as everyone else. I wonder if they all have pain and issues like me but they just go on and don’t say anything. I hear other stories of people worse than me doing more than me and feel like I’m just being lazy. It’s hard. I wish we could switch bodies sometimes just to see how each other actually feels.
@@anitaratliff2779 Honestly I can't shake that feeling off no matter how hard I try, the truth is I see alot of non chronic pain people who do less than me so why must I feel so bad, at end of the day the general ease most normal people feel every day at all times is something we don't have so we have to be a bit kind to ourselves. Simply waking up and going to the library for 5 hours is something I could never do and those people you say have it worse then you, that might be true for some but I suspect alot of the time that isn't true, there pain could sound worse but actually be alot more manageable and someones pain could sound mild but in reality be so bad
@@anitaratliff2779 at the end of the day Anita there are probably alot who you work harder than, who are not in chronic pain so don't focus on the minority only and hate yourself for it. And you truly don't know what pain there in to conclude there simply stronger than you. Are you actually lazy or are you just overwhelmed by your pain?
The fact that you feel guilty is proof you wanna work hard but it's harder for us. this comment is just as much me talking to myself as it is talking to you.
As someone who lives with Chronic pain myself, do any of you know about Chronic Pain peer support groups? This is a great community to find and be a part of. Also, there is a free conference called PTPT (Putting the Pieces Together) hosted by an organization here in Canada. They have discussions around different topics. You can find past videos on TH-cam: Pain Canada. Coming up November 2024. There is also free resources available on the Power Over Pain Portal.
I grew up chronically fatigued and tired all the time… I was told it just hormones growing up as a teen, I was told it’s a phase… I was called lazy and was picked on allot, I stopped talking to people and isolated myself threw the years. It made me cold. Worst of all I hated myself and was mean to myself. I didn’t even know what chronic fatigue was for such a long time… Iv been dismissed all my life and treated unfairly n even now I’m judged… It’s caused me allot of damage over the years
Sending you gentle hugs 🤗 It sucks, people are so judgmental, especially nowadays. Some people are committed to misunderstanding you, protect your peace more than anything.
"I have chronic fatigue too, it's called a full time job" 😪
Yes, it definitely can be a full time Job !! 😬😍
What do you do when your parents and family are the ones who don't understand, all of your friends abandoned you becaues of your illness, my spouse left me because I got sick...so....I really don't have anyone that can support me in the way that I need when I desperately need help - and I never ask unless I am absolutely desperate for help....
It's a visibilty issue. If one were to break an arm and have it in a splint, most people would naturally help with opening heavy doors, carrying shopping bags, etc. With an invisible illness, asking for help usually only invites refusal and scathing comments.
I can't help with most groceries either. It was annoying once a store was shutting down and my mom's boyfriend started getting all the can food. I was like why gosh I am not going to be able to help with any of that.
omg this video was so amazing and really helped me a lot!! Dealing with people who cannot relate or understand to my chronic illness is a quite lonely feeling. However those who do understand and connect with you is the complete opposite, it’s like you’ve found $1M dollars on the ground. I’ve had so many times where people dismiss my issues or claim that it’s because “im not active” or “why did you stop doing xyz? My friend with abc condition can do it so why can’t you?” doesn’t feel like genuine affection or care, rather ignorance full scale.
I wish I had someone to advocate for me... Here's my story with CFS. I have abusive parents, so I also have PTSD. Throughout my life, my parents have accused me of not doing anything and being useless. The only other relationship I had the energy to maintain was with my ex boyfriend. But he made me feel like I was the biggest burden and like I was selfish for not doing normal things eg. half of the housework and not contributing more to the relationship. I hate when people make you feel like a nuisance for something you don't have control over. Like, if I could be completely independent and not have to ask for anything, I would. He told me on numerous occasions, "I didn't sign up to be your carer." And I get it, it's hard to support someone to the extent that I require, but then do you truly care about me? Here's the real kicker: when I expressed that I don't want to live anymore because of all this, he accused me of blackmailing and manipulating him. So, you don't want to support me properly, but me becoming suicidal because of the lack of support is blackmail?
Your mum sounds really supportive and like such a lovely lady. I'm glad that you're doing well. Thank you for making this video :)
I hear you.... much love n care 💙🙏
They will only understand when they have it themselves. I have had Chronic head pain and disability for 22 years, I don’t expect it now.
I know this old but ive never had anyone fighting my corner. Thank you for sharing. People dismiss my disease and it winds me up. Even after lots of education. I have alot of people who in ny life who also says the right things when they people are watching but they dont actually support me. I have to advocate for myself constantly and when your disease has become active again the battle gets tougher, some days just want to roll over and give up but you dont
Attendance requirements are such a massive disability issue, I missed a good chunk of school and it was still so much less than what would’ve been safe for me. I was dying and I am permanently more disabled as a result but all the school cared about was their attendance scores to get funding.
My parents do not understand at all and they still think I am making it up and say oh everyone gets tired whenever I bring it up.
Oh no!! that must suck!! I'm sorry that must be really difficult!! HOpe your doing ok, and have people who you can talk to!!
I haven't watch the video yet only a few seconds, but I just wanted to say this combination of the pink eye shadow + certain parts of the hair + natural color (I'm guessing?) eyebrows + top hair is killing it.
35 years of M.E. and being either disbelieved, brushed off and when someone asked how I was at a church thing I answered that I was exhausted and out of energy, telling the truth and this person said "people don't want to know about your problems " I tell you all, how I managed not to cry I don't know. I was fuming inside. I try to avoid that person, she was one of the youth leaders in the 1980's at that church, her attitude is 'oh well you've got to keep going '. Not an ounce of understanding. I'm sorry for anyone being treated like this 😔 ❤xx
That’s awful! When I was healthier I always understood that everyone has their own life experiences and I respected that. Don’t take people like her seriously. Your suffering is valid.
@@bobbybero7452 thank you. I try to focus on my art and crafts as and when I can, which helps to distract my mind from unhelpful people 😊🧶🦋
What hurt me the most, was my best friend, who has battled with chronic fatigue for years, but is doing better now, said to me that I was never meant to stay home all the time.... I don't care what strangers think or say, but those close to me... ouch
Even with my dr giving an authorized note they still say I'm lazy and they don't care
I loved this video! I struggle so much because my parents just don’t understand. I’m often having to use crutches just to get around the house now tho so hopefully they’ll see it and it’ll click
Thankyou so much !! 💕 im so sorry they dont understand, hopefully they will soon 💕 if you ever need to talk to someone you can always message me on Instagram 💕
My mom is the same I thought she understood because she is the parent that I live with and not get my pain and fatigue.
I have a NDIS worker who does this. Told me, everyone has their own health issues. And walks around the house singing loudly when I'm laying in bed with vertigo and a migraine.
She also was trying to make me not have the aircon on because she had a sniffle in the car when driving me to my appointment. I'm heat intolerant and this can make me sick for days being in a hot car. It can affect my walking. She is so very self centred and says she understands but her actions are the complete opposite.
Thank you for this video.
No one understands and if you hv no one to advocate for you it's so much harder so I agree with all you said....
My strategy has been to be persistent to a point where you see there's no point and then give up coz it takes energy to keep repeating over and over and over;(
Having someone to advocate for you definitely makes it a lot easier!! But I'm sure your doing great anyway!! you're right there's no point arguing with people who are determined not to understand!!
From watching this video it's made.me.think deeply about who it is I can get to fight my corner when something goes wrong!!
You're such an inspiring young lady! I know exactly what you mean! I hade a brain tumor 4 years ago that caused a stroke! It affected my left side and to this day I still can't walk 100%! I have to take chemo meds to control my cancer I'm always fatigued and tired and I hate it! I get depressed a lot and I had someone I thought was close to me tell me everyone is going through depression now! That really hurt me! That was saying to me my depression didn't matter because everyone has it! Not everyone with depression is living with cancer! Love your videos you inspire me!
My fatigue makes me feel heavy, and i can't be on the run all day, no matter how much there is to do.
It's not that they don't understand - it's that they block you questioning you WHY - making their care conditional to their understanding.
PASSIVE AGGRESSIVE
Disguised by compassion.
But they block you - even by making promises and wasting your time waiting never intending to help.
Should've said no to begin with.
It's disrespectful and insulting.
Love love love!
❤
This really broke my heart hearing this honestly it made me think what kind of teachers did you have at the time
Recently I had to cancel an appointment with someone a second time due to being sick and he wasn't believing me, like I did it on purpose which I certainly did not.
He doesn't know my condition as good as me, so he didn't believe me. I tried to explain, what's happening, he said he'd believe me, but I'm not convinced. If he doesn't believe me, he should just say so, but he doesn't. I hate that
I have fibromyalgia and I’m gonna have to quit working soon. I feel so guilty but I didn’t ask to be chronically ill
You’re 100% and it does affect other mentally knowing others don’t believe so I rather be alone.
I promise there are people out there that get it, but you’re right it can be really hard to find them! hope you’re doing ok
Loved this my lovely!
Shannon Emelia Thankyou !! That means a lot to me !! 💕💕
2 GREAT LADIES! 🤗🤗💝💖
Heather Hartman Thankyou 💕💖
Thank you for sharing! Sometimes people will send me a text and say, I hope you’re feeling better, or get better soon, I used to write, I have a chronic illness, I’m not going to get better. Now, I just let it go.
“I sit on a man’s back, choking him and making him carry me, and yet assure myself and others that I am very sorry for him and wish to ease his lot by all possible means - Except by getting off his back.”
- Leo Tolstoy: ‘What is to be done?’ (1886)
Honestly this video is beautiful, I'm still searching for a diagnosis for the last two or three years by myself, been to two rheumatologist they say fibromyalgia, but I believe its lupus cuz like two years ago they did lupus blood work that shows it and everyone ignored it and on top of that I've got multiple discs in my neck and lower spine that are out of place and causes a lot of neurological problems which interferes with me trying to make food and eat
sucks being tired all the time no matter you do
why did you still go to school at all? sounds like too much effort
Don't have an advocate. It"s hard.