@moonlit_kit: I got a comment recently saying I was “watering down the meaning of disability” by talking about dynamic disability, and it made me think about how different some people’s perceptions of me and my day-to-day life are from reality. I forget how little of my bad days get seen bc I’m stuck at home and unable to socialize or film. #chronicillness #chronicallyill #chronicillnessawareness #disability #disabilityawareness #flare #flareup
I actually filmed a bad day and it got over a million views and then people all told me that I was faking it..... they literally have something to say no matter what we do
2025-08-10 21:39:36
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clarabelle457 :
After any drs appointment (in person or telehealth) I can go back and read what the dr said about the visit. I hate that 9/10 dr’s comments say “patient presents content, bright eyes, well groomed, very vocal and appears well.” NOOOOOOOOO this was just a mask because I’m petrified of showing how I really am and risk a psych vacation
2025-08-10 00:18:23
135
David :
People don't think I'm introverted because when I AM out, I and sociable, friendly, and talkative, but dont realize that's 0.3% of my day but takes 40% of that day's energy.
2025-08-09 22:28:21
93
Tessa :
"when we are at our worst, we disappear"
2025-08-15 21:31:31
43
Marta 💝 :
The problem is when your lower simptons still being horrible, but we emmascarated trying to be humans... and then when you are at your worst, people say "but I thought you were better" THAT DAY, not always... I usually have to stay lie in my sofa and sleep...
2025-08-09 22:23:53
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BearlyGrizz2020 :
dude there's been days where it literally hurts to blink
2025-08-13 06:48:07
13
gnuledge :
That's part of it, sure. But also they think you've miraculously recovered if you have a good day. So it's just the ableism.
2025-08-10 00:11:02
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Carla Frisinger :
Yeah, you had enough energy to put clothes on and comb your hair. That’s sometimes a good day.😭
2025-08-10 11:20:29
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Womblebats🇦🇺❤️💛🖤🐨 :
Literally. I feel like starting with “I had to stay in bed for The last two days and take a bunch of meds so I could be here today and I will have to do that for the next two days to recover.” It’s why I hate last minutes plans because I need at least 4 days to prep.
2025-08-12 00:33:18
6
Sarah :
and I hide it because I get told I'm being dramatic
2025-08-09 23:59:41
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Dogdays :
I’ve had MS for 20 years and I can honestly say, people do not care what your bad or worst days are like. When they ask how you are, they just sent you to dau “ok” and then they can carry on telling about themselves
2025-08-10 22:31:32
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AReflections :
I hear you. I just showered today after 4 bad days in a row
2025-09-22 23:24:25
3
Peachandpearpie :
I mask a lot then I'm stuck in the house for months and I get severe muscle spasms including right sided paralysis and on diazepam.
2025-08-10 00:45:47
1
🐾Laura 🐾 :
Fighting for disability for four years, my family finally understands that I have more bad days then good. Unfortunately this won't change but it's nice to see they finally understand.
2025-09-27 08:34:25
1
Witch in the Wild :
my neighbours mistook my carer for me for the full 6 months we lived next to each other because the first time they met me was the weekend before I moved out 🤣😅
2025-08-09 23:05:25
7
nowixe :
girl i only see them on my good days and they don’t understand why i cant go out this weekend or why i haven’t met up with them for a while 🙂 “it cant be that bad”
2025-08-25 18:11:04
3
angeleenamarie :
This is so true, no one ever sees me at my worst or even just on my daily battles. They only see me when I’m masking, but if I didn’t mask I’d get roasted for being dramatic or being annoying or something. We can’t win either way
2025-08-11 21:16:44
13
Alicia Earl-Gray :
my husband likes to see where my symptoms tracker symptoms are at night so we can attempt to make a plan to do stuff together. like if I'm having a high symptom day we try to do things like reading and cuddling together and plan to go to the park on lower symptom days and we plan for a plan be of a flair up happens
2025-08-10 16:21:32
6
Di | | chronic lifee outloud🍂 :
All of this✨💕
2025-08-30 21:09:00
2
Valerie Altman :
This is so accurate! It’s so frustrating!!!
2025-08-11 17:45:32
3
frollein.moehre :
i'm typically fake being healthy. like wdym no pain? atp i dort eventuell know who i am without pain
2025-08-10 13:27:26
4
trashpandas___🦩 :
This is very true. On my bad days I can’t eat, sleep, or get out of bed except to use the bathroom
2025-08-10 13:50:56
3
Peaches :
n when u rant, tweet, n post ur low days on social media, u get scolded for it.
2025-10-01 07:09:48
1
🪴Ramona North of Sweden🦥Gen❌ :
Yes, on the really low days I never leave the house at all and many people don’t get it at all 😞💜💜💜💜
2025-08-25 18:23:52
1
Ivy 🌿🌳 🍉 :
so true! the opposite also happens to me. with family and people I've been close to on my high symptom days/flares, they don't believe me on good days when I say I can do something. it feels very infantalizing sometimes (this is different than someone reminding you "hey, this might put you in a flare", that can be helpful to have perspective)
2025-08-11 10:11:56
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