How to deal with people who DON’T UNDERSTAND your CHRONIC ILLNESS My experience with CHRONIC FATIGUE

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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.

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.

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 have chronic fatigue too, it's called a full time job" 😪

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

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

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.

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.

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

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 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.

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.

Even with my dr giving an authorized note they still say I'm lazy and they don't care

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.

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 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

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;(

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....

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!!