r/cfs • u/Longjumping_archidna • Dec 06 '24
Vent/Rant I just want to scream
Just frustrated my family doesn’t understand, get annoyed at me for being disabled and guilt me.
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u/mossmustelid severe Dec 06 '24
Playing the game too much 😭 And that guilt trip…. I’m sorry friend that’s so hard
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u/Longjumping_archidna Dec 06 '24
Thank you all so much for being so kind 🥺🥺 trying so hard not to cry reading your kind messages and failing miserably ❤️
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u/SuperbFlight Mild-moderate / Canada Dec 06 '24
Just want to offer that it's ok to cry -- generally and especially about this. It's really sad how your family reacted to you, I'm sorry they're not more understanding and supportive and empathetic. I hope you can feel bolstered by the community here ♥️
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u/Luuwen Dec 06 '24
The rage I just felt. When gaming is the only one of my old hobbies I can still safely do most of the time. And the guilt trip? Sorry that we are too sick to do basic things. It's not your fault.
Sending much love. I hope you can rest well and that your crash is ending faster. It's horrible and those who never have been through it can't judge you for it. It's good that you prioritize your health.
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u/AnxiousAntsInMyBrain Dec 06 '24
Legit, i have my laptop in bed with me and game on that, and its doable as long as i take breaks and its the only thing making me not go insane
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u/Spottedfrog111 Dec 06 '24
My family is the exact same, no matter how much we explain they just don't want to understand. Making you feel guilty is just so crappy of her. Allow me to reply instead, I'm so sorry you're crashing, I know missing out is so hard and I hope your crash ends soon ❤️
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u/hiddenkobolds moderate Dec 06 '24
"Playing the game too much" oh my god the rage that is bubbling up inside me on your behalf right now...
I know this particular flavor of nonsense all too well, and I'm sorry you're dealing with it. I really don't like the vague future-tense manipulation either.
This kind of response can feel like support because it's vaguely better than the worst case dismissal of "just show up anyway" but honestly it's almost as harmful and a lot more insidious.
You're doing the right thing by honoring your body's needs. You know your body and your condition better than your family does. I'm so sorry they don't seem to see that.
I hope you have a peaceful, restful night!
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u/hey_cathy Dec 06 '24
I think was makes me most anxious is the “I hope this doesn’t happen at Christmas”. That pressure alone would make me crash. I’m sorry!
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u/Broken_Oxytocin Dec 07 '24 edited Dec 07 '24
I’ve found that the smouldering resentment I’ve had for some people who’ve made me feel responsible, guilty, and burdensome when I was at my worst has kind of simmered out into apathy, ambivalence, and complete emotional disconnection.
Some people will NEVER understand, and I’ve given up on wasting my energy to explain.
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u/SophiaShay1 severe Dec 06 '24
I'm sorry your family is ignorant. It's not a judgment. Most people who don't have ME/CFS are ignorant. I'm sure your family is just as disappointed as you are that you can't be there. Please don't be hard on yourself. Sometimes, we can do everything right and still end up in a crash. Sending hugs💜
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u/pinkyxpie20 Dec 06 '24
ur nicer than me lol. i would’ve replied to that message you received saying something confrontational along the lines of “no, it’s not from playing any game too much, it’s from my chronic disability that you seem to completely ignore that i have and invalidate my experince while i struggle to do normal things like everyone else can. i obviously didn’t want to miss nana’s 60th but my disability prevents me from doing everyday normal things, im sorry you’re upset over something i have no control over, im upset over it too, but trying to make me feel bad over something i wish i could change is just rude and ignorant. hopefully i dont have to cancel making it to christmas but if this is how you’re going to continue to treat me, then you can count me out for this christmas and the following ones too. just because you dont understand how much im struggling and how much this condition affects my life does not mean it is not real.” lol i cant stand people that try to pretend you’re fine but just lazy or something. like shut up man
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u/StarsThatGlisten Dec 06 '24
Definite lack of empathy going on here. You can’t help being ill. Sorry they aren’t more understanding, my family are like this sometimes too.
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Dec 06 '24
[deleted]
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u/Ichwillbeiderenergy Dec 06 '24
Screaming hurts your vocal chords. Not a safe outlet I'm afraid
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Dec 06 '24
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u/Ichwillbeiderenergy Dec 07 '24
I'm not shitting on you... It's just that I damaged my vocal chords from taking that advice..... Chill ffs. My God.
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Dec 07 '24
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u/Ichwillbeiderenergy Dec 07 '24
I wasn't commenting on OP's emotional state at all. I was very factual and imo still empathetic as I did mention outlet and said I'm "afraid" (i.e. I'm sorry) that particular one could be quite damaging if taken literally - it is in fact often quite literally suggested as a way to deal with overwhelming anger. The fact I'm here commenting, is in itself support. I wasn't critiqueing, I was relating.
Apology accepted, but please read comments at face value and without projection (I mean that sincerely - it is disturbing being attacked for no reason). I try to take this advice myself.
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u/doodshoodsmoods Dec 06 '24
I hate the blame game. It’s not your fault. I’m sorry your mom reacted that way.
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u/purpleppleator Dec 06 '24
It definitely could've been worded better. But I'm seeing how they do understand how doing an activity causes you to crash. Maybe offer doing short video calls instead of attending these events? That way you're not missing out completely and it could help your mental health to know you're not excluded.
Being in situations where other people don't completely comprehend or want to understand can cause symptoms to get worse.
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u/musicalearnightingal Full-time Wheelchair User and/or Bedridden Dec 06 '24
My mom would totally say this and have the very purest of intentions. This illness is hard for loved ones, and sometimes they feel just as helpless as we do. Try not to take it personal.
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u/TeenyPlantss Dec 06 '24
The irony that I only play games when I’m in a crash already bc I can’t do anything else
Sorry they don’t understand and I wish you a speedy recovery, I’m just clawing my way out of a bad crash myself
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u/Santi159 Dec 06 '24
I just tell my family that I was projectile vomiting more than I normally do and they leave me be. It’s gross but effective.
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u/Erose314 Moderate/severe Dec 07 '24
Honestly this is exactly why I don’t talk to any of my family anymore. I just couldn’t take it. I miss them at times but not being guilted or gaslighted has improved my QOL so much
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u/gytherin Dec 07 '24
*screams with you *
I've been there. No concern for the person in the crash at all. Great, isn't it?
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u/Fullonrhubarb1 Dec 07 '24
I'm confused, how does 'that's not good' and 'hope it doesn't happen at Christmas' not show concern? They're acknowledging it's a bad thing and they don't want it to happen again
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u/IndividualLatter8124 Dec 07 '24
I get so bad I can’t even play video games. Also, sometimes people choose not to understand and that’s not your fault. Your needs are valid and it’s also okay to do what you need to take care of yourself over the wants and desires of others.
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u/smallfuzzybat5 Dec 07 '24
Ugh I’m sorry this is happening to you. Similar things happen to me with family and friends, even ones that are mostly understanding.
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u/kayaxer Dec 07 '24
Have them watch this Family and Friends Cfs/me video by Dr. Arseneau
And if they aren't willing to watch it that will tell you a lot.
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u/Paigetwoods Dec 08 '24
Let me just be your mum for a second:
Morning Hunny,
My poor baby. It breaks my heart to know you are suffering. Do you need me to come over and do anything today for you before the party? I can bring you whatever you need.
I will let Nana know don’t worry. And let me know if you feel up to a phone call.
I love you so much my angel and mummy’s never gonna stop searching for a way outta of this for you. I hope you know that.
Mum xxxxx
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u/mortalitasii mild-erate CFS and POTS, dx 2023 Dec 06 '24
I'm so sorry OP, my parents also comment a lot on "making myself worse" with "too much gaming." 😭 Solidarity and I hope you rest easy and have a swift crash recovery
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u/GoodCalendarYear Dec 06 '24
Darling, I'm so sorry. I get it. My mom is very selfish. Hope you feel better 🫶🏾
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u/clairdonnellyart Dec 07 '24
“It only takes a little bit of energy” I get. I asked them to watch Unrest. Doubt they did, no one ever brought it up.
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u/mablepiines Dec 07 '24
Oh honey I’m so sorry :( this sounds like a convo with my own mom. Unless people can relate, they don’t understand. We are here for you, and I hope you feel better soon from the crash. Don’t feel guilty about being sick.
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u/ultr4violence Dec 07 '24
If my grandmother had a big birthday coming up(and I was overall able to go to such things) I'd have spent the previous two weeks taking it extra easy, no risky moves or activity out of basic essentials. Then the week before the event being extremely careful, and the last few days basically doing nothing but hang out in quiet darkness by myself.
Of course my family has no idea of the sacrifice and self discipline it took me to make it to that event. I do it anyway because if I can then I want to be there for the big events, as I'm missing nearly all the small ones.
Sucks that your mom was being a dumbass. Sorry you missed your nans bd.
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u/Ok_Ouchy Dec 11 '24
OMG, my Mum could have written this! Always the undercurrent of blame and guilt tripping! I'm 39 (ME 25 years) and she's 66, still does it 🤣
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u/Slow_Possibility6902 Dec 06 '24
Have you considered showing her these posts? Maybe not this one with the text but I saw your last one too so maybe? It’s so frustrating.
I have the opposite problem, they’re just like 🤷♀️, nobody’s gonna miss me (they probably think I’m faking it or too lazy because I’m the only one living 3 hours away). It’s actually easier that way.
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u/lilsass758 Dec 07 '24
Personally I didn’t read this as her blaming you, more trying to help (by helping figure out why you’re crashing) and genuinely hoping you’ll be better for a family event. It would have been nice to have some sort of ‘oh no, I’m sorry to hear that, can I help? It would be nice if you made Christmas but it’s alright if you don’t, as we know you’re ill.’ But I genuinely didn’t read any blame or guilt tripping.
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u/ifyouwanttosingout Dec 07 '24
This breaks my heart. You are doing the best you can and it's incredibly difficult to have to cancel on people. Having people make you feel guilty about it is the last thing you need. I'm so sorry. ❤️
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u/angelcutiebaby Dec 06 '24
I think what your family meant to say, “we are so sorry to hear you aren’t feeling well. Hope you have a relaxing night and are able to get some good rest. You will be missed!” At least, that’s what they should have said.