anons shouting into the NEISVoid @AnonsInTheVoid
place to ask anonymous questions or tell stories for the #NEISVoid - DM and I'll post it | run by @undercafeinated Joined January 2021-
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Much thanks to a redditor for posting this chart in the #fibromyalgia sub. #ChronicFolks - Can you dig it? #NEISvoid #DisablityTwitter #ChronicPain #health #women #autoimmune #spoonies #chronicillness #chronicallyill #LongCovid #longhaulers @AnonsInTheVoid #spoonie #MECFS #pain
@AnonsInTheVoid @bennessb Anyone else in the #NEISvoid fighting with #IntersticialCystitis ? It's a wicked curse. Haven't had a flare this bad in a while, thank God, but OUCH it's a nightmare. Would love to connect with others who suffer & chat ideas/solutions or just vent.
Dear Twitterverse, does anyone in my follower list know of a clinic / geriatric rehab center in the vicinity of Berlin that works with patients suffering from postoperative delirium?
#NEISVoid Everyone please hit me with your PANDAS knowledge. My daughter - 17, autistic, ID, OCD - has wicked high WBCs and platelets. She cycles through intense OCD periods. Her psychiatrist has noticed they're worse following illness and suggested PANDAS.
@AnonsInTheVoid #NEISvoid I just found out my family has a history of lupus and while my “mystery illness” shares almost all of its symptoms, including the face rash, I had a negative ANA screen last year. Is it still worth looking into, or there is absolutely no way I have it?
#NEISVoid one of void-ers has surgery the first week of October, & they could really use help to get their apartment set up by then amazon.com/hz/wishlist/ls…
#NEISVoid any ideas? (QRT so that more people can answer)
#NEISVoid I hope it's obvious for most but here's your reminder that if you're anti-mask/anti-vax/pandemic minimiser or denier you're not welcome here and you will be blocked
Hello fellow #chronicfolks. After yrs of procrastination, I'm finally accepting that I need to wear compression socks. I'm petite (US shoe size 5.5/EU 35/36) but have medium-sized calf. Can you recommend brand that doesn't dig in under the knee & isn't difficult to put on?
@DiaryofaSickGrl Question to fellow @AnonsInTheVoid #NEISvoid If people understood this and instead of suspicion, accusations & judgment we were given understanding and kindness - nothing else; no solutions or tangible support - just empathy, how much would that impact your mental health?
@migrainemeander @MigraineTrust @AnonsInTheVoid @BNightsCRPS #neisvoid #crps Does anyone use Trazadone as rescue med to break intractable migraine? No relief w/Ubrelvy, Tramadol, Nsaids. Any advice so greatly appreciated.
stable finally, getti.. @bennessb
27K Followers 693 Following currently: haunted / unwell & host of No End In Sight, creator of #NEISVoid, a keeper of @RTsFromTheVoid. find me on 🦣: @[email protected] she/her.
Candace D. @DiaryofaSickGrl
12K Followers 1K Following Wife. Mother. Dog mom. Chronic illness advocate. 🥄♥️ #hEDS, #MCAS, #POTS, #foodallergies, #cornallergy, etc.
Joanna No Banana @JoannaNoBanana
31K Followers 21K Following Joanna (she/her) 28 Queen of Allergies 👑 MCAS, POTS, EDS & CCI💛 Autistic, ADHD, OCD. PMDD. Check out @allergybeauty for allergy friendly products!
It'sME(Jaime) @exceedhergrasp1
20K Followers 5K Following Director of Sci & Med Outreach, #MEAction Stanford Med #ME, #EDS, #POTS, #LongCOVID Views my own [email protected]
Beth Morton @beth_morton
6K Followers 2K Following Researcher/advocate/#MigraineChat host 🧠 She/Her/Dr (the PhD kind). Links ⬇️ Header: @/dinosaurcouch.
Zahra Khan (she/her) .. @hellozeik
5K Followers 2K Following Aerospace Engr. Alum: @NASAPersevere @NASA_TESS 🤖 🚗 Interests: patient-centric healthcare, antiwar in STEM. Cofounder @feministfitna blog @SmacksForehead
Dr. Ashley | The Pani.. @PanickedFoodie
9K Followers 4K Following Scientist | Cornell Alum | Food Blogger | #FluidMechanics #HeatTransfer #CovidIsAirborne On TikTok under The Panicked Diaries.
Alex B @AlexDesignsIt
1K Followers 5K Following she/hers • queer • disabled • graphic design • nonprofit • solidarity forever • clEDS • ADHD • C-PTSD • ischemic colitis • cat mom • nature lover • science!
cdc hater @swampflora
3K Followers 829 Following alex. they/them. biracial. autistic. #pwME since 2002, currently #severeME + bedbound. header art by titsay. blocked by the DSA 💅🏽
Trish Orwen @trishorwen
2K Followers 3K Following Toronto Star. Montreal Gazette. retired journalist. national science award winner. Proud mom and grandma. @[email protected] #BringBackMasks
Sofalicious @sofalicious_
47 Followers 139 Following
ellie_danlos @ellie_danlos
1 Followers 46 Following professional rubber band. i blog about hypermobile ehlers-danlos, medical gaslighting, and structural issues within the u.s. healthcare system
Kelsey Navis @klnavis
1 Followers 52 Following Scientist, entrepreneur and advocate. Sharing personal experience & research-based insights for managing #longcovid, #MECFS, and #ebv
Joanne Wisely @poppysweeney
0 Followers 341 Following
Stupid Axolotl @axolotl_stupid
53 Followers 393 Following He/they || New anon acc to public tweet || 23 || Transmasc 🏳️⚧️ || Queer 🏳️🌈 || Jew ✡️🇵🇸 || hEDS ✌🏻|| POTS 🍳 || Depression || Anxiety || Spoonie 🥄
Kimi Dolan @kimidolan
94 Followers 186 Following Designer. Mom. Five foot one. I want to teach what I learn because I wish someone had taught me. #live #love #laugh #art
Hospital Mom @hospmom
254 Followers 1K Following ME Warrior Princess, CHD Mom, Neurodivergent pixie, Fan of cool stuff
Vital Reaction® @h2vitalreaction
790 Followers 5K Following Full Body Rejuvenation! Vital Reaction® is a #health and #wellness company specializing in molecular #hydrogen. #LongCovid #MECFS #CKD #Fatigue #millionsmissing
Gabriel @Mindfull_Ease
17 Followers 301 Following Fighter, survivor & artist. vEDS, POTS, MFS Genetic swiss cheese brain collagen adept. Taking sturdy steps in hope, flexible on nuances & limits.RSO proponent ⚔
daws 🦋 @dawswastaken
736 Followers 5K Following 23 | he/him | 🍑✈️🍊| crunchy joints gang ♿️ | 08.28.19 💛
Caroline Wise @cmwise25
221 Followers 2K Following
Bleachtaire @bleachtaireigin
8 Followers 1K Following
vaginalvoodoo @vaginalvoodoo
598 Followers 3K Following $vaginalvoodoo Red Muff/ Dandruff/ Kitty Fluff - Lust//UnLust
gwyn schneider @gwyns
592 Followers 4K Following i adore my little family... photograph people and stuff...want to build things to help people live better lives... love all things random (she/her)
Breht Warner @BrehtWarner
219 Followers 385 Following
Stickman Communicatio.. @stickmancrips
7K Followers 6K Following Stickman Communications Ltd: Creating understanding of disability related needs and issues. Run by Hannah Ensor. Now also on spoutible.
sooosickofthis @sooosickofthis
34 Followers 164 Following Chronically ill. Disabled. CVST. hEDS. POTS. MCAS. etc. she/her.
Max Fisher, RSci 🧡 @OuchTheMouse
141 Followers 500 Following Scientist | DeafBlind | Disabled | Neurodivergent | Genderqueer | Asexual | They/Them | Non-monogamous | Druid | OBOD| Bookworm | Awesome
Tara Dylann, Esq. ♿.. @TaraDylann
509 Followers 1K Following Attorney ⚖️/ Co-Founder- Nat’l Disabled Legal Professionals Assoc. @NatDisLegal + @NatDLSA / immunocomp & Crohn’s & EDS 🦓/Opinions my own + not legal advice
ilikefondue @plecorbeau
311 Followers 5K Following
ian graba 🍉 @_ianbraga
900 Followers 3K Following 🇵🇭 MD. MBA. WIP. @isdateneans S1katuna. 🤿 🚴🏽 🐕 🐈 📸 ⚕️ 🎮 📖 💜 Born on a Sunday. He/Him. Opinions mine. Rants mostly, feel free to go elsewhere.
New world problems @Newwrldprobs
133 Followers 650 Following I’m not who I want to be, but trying to get there.
Z @smd0421
0 Followers 129 Following
LETS GO DOGGIES ❤�.. @CurvyQueer_
7K Followers 8K Following Tom Hanks, a Big Guy and a Mouse.. Rheumatoid Arthritis, PCOS, IBS, BPD, Fibro, Audhd, Neurofibromatosis, Western bulldogs, Melbourne storm
Amy @ChronicAmy
5 Followers 37 Following
สะบรีนะ.. @sabrina
10K Followers 2K Following staff product designer @shop @shopify ~ ex @github @buzzfeed @venmo ~ baby carat 💎 ~ she/her 🇹🇭🇵🇰🇨🇳🇺🇸
b on wheels♿️ ⸆.. @bendybeee3
108 Followers 317 Following ♿️ queerly shouting aggressively in monotone, into the void. disabled asf. cEDS, ME/CFS, SWIFTIE. needed a place I could bitch & moan✨ they/she
Grandpa Charlie is pr.. @CharlieK1310
467 Followers 2K Following Northerner at heart • Pol + IR grad • 🌱 • Trans🏳️⚧️ • 💉 - 21/01/21 • 🔪 - 08/03/22 • hEDS • POTS • All views are my own
brookie is simply try.. @brookielove44
5K Followers 4K Following 🇵🇷• 31 • lorge hunger games fan🕊️⭐️🐍 • Twitch/Kick Variety Streamer • She/Her/They • https://t.co/kCagfE8t7d
Kellyann Murphy @KellyannM210
211 Followers 510 Following Beloved of the King of Kings. Medical Zebra. Ehlers-Danlos Syndrome MCAS/cPTSD/Autism/AuDHD. Family Scapegoat Survivor. #NEISVOID
greysaddict @greysaddict1
12 Followers 375 Following
Hayden Nickel (he/the.. @haydeninallcaps
63 Followers 297 Following Cake maker, word fountain, sunset chaser.
Cheryl Velasco @rntiggergirl
47 Followers 577 Following
Myrtle Snowball 🐀 .. @alchemicalbird
322 Followers 2K Following cartographic metadata librarian. AuDHD. elder queer. recovering goth. intersectional feminist. antiracist. land back. ↙️↙️↙️ medic. 7 cats on main: @7BrokeCatz.
Empress of Cheer 🌸 @empressofcheer
583 Followers 431 Following An adhd spoonie 🥄 Cheer, not toxic positivity 🌸 Follow me https://t.co/EZngwmrsUm
s @dopaminefi3nd
23 Followers 129 Following 27 | audhd, immunocompromised. i have a lot of opinions about video games and books | currently playing stardew valley again
Raissa Amany (she/her.. @raissamany
524 Followers 1K Following Top 25 Women of Influence | BHSc(c) @uOttawa | ED @THEYCRH | @Our_KidsHealth @CYMHA_ON @KidsHelpPhone | activist, speaker, CI | settler | views = own
lindagdetroit @lindagdetroit
223 Followers 550 Following Dealing with Longhaul Covid/MECFS since the first wave. 4 year anniversary 3/24/2024 'I Create The Space For Good Things To Happen'
sasha @cactus_ghoul
467 Followers 2K Following FREE PALESTINE 🇵🇸 | he/they | sickly | settler studying cancer disparities, medical racism & Indigenous futurisms | poetry @ blanket sea and bottlecap press
C-Bomb @carolyngodden
113 Followers 282 Following
Helena @Helena_Glorybow
26 Followers 409 Following
S @AltrEgoDrvsMini
31 Followers 294 Following
sarah coppola @scoppola9
555 Followers 1K Following she/her/dr. hcd prof. human factors/ergonomics/occupational health researcher. I think I study how people use tech because I'm so bad at it.
stable finally, getti.. @bennessb
27K Followers 693 Following currently: haunted / unwell & host of No End In Sight, creator of #NEISVoid, a keeper of @RTsFromTheVoid. find me on 🦣: @[email protected] she/her.
fibrooooo @fibrofuckboy
2K Followers 260 Following 🎙 No End in Sight 👨🏽💻 @RTsFromTheVoid 🏳️⚧️ 🏳️🌈 🇻🇪 fibro, hEDS, POTS i write poems tips: https://t.co/rN6knwCAD0 gifts: https://t.co/R9j5SbpcrN
(expect RT delays) th.. @RTsFromTheVoid
4K Followers 3 Following delayed daily retweets from #NEISVoid | kept up by @bennessb & @fibrofuckboy | illness / neurodivergence / disability / no dx required / all dx welcome
sam (mostly on hiatus.. @undercafeinated
590 Followers 193 Following queer deaf crip living on coffee • ze/zir • keeper of @AnonsInTheVoidMuch thanks to a redditor for posting this chart in the #fibromyalgia sub. #ChronicFolks - Can you dig it? #NEISvoid #DisablityTwitter #ChronicPain #health #women #autoimmune #spoonies #chronicillness #chronicallyill #LongCovid #longhaulers @AnonsInTheVoid #spoonie #MECFS #pain
@AnonsInTheVoid @bennessb Anyone else in the #NEISvoid fighting with #IntersticialCystitis ? It's a wicked curse. Haven't had a flare this bad in a while, thank God, but OUCH it's a nightmare. Would love to connect with others who suffer & chat ideas/solutions or just vent.
Dear Twitterverse, does anyone in my follower list know of a clinic / geriatric rehab center in the vicinity of Berlin that works with patients suffering from postoperative delirium?
Still on the emotional rollercoaster of being diagnosed with “Lyme”, finding out it was probably a scam, to thinking I may have finally found a real lead, just to find out it’s really unlikely, so I guess I am just needing some hope right now instead of embarrassment. #NEISvoid
@AnonsInTheVoid #NEISvoid I just found out my family has a history of lupus and while my “mystery illness” shares almost all of its symptoms, including the face rash, I had a negative ANA screen last year. Is it still worth looking into, or there is absolutely no way I have it?
People with poorly understood illnesses do not deserve to be labeled as psychosomatic and cast aside. If this is happening to you, you are not alone. /5
I hope reading my story helps others feel less alone in the same way that reading the testimonials of people like @meghanor, @julierehmeyer, @mayadusenbery, and @bennessb helped me. /4
Struggling with the remember-to-show-enough-of-your-pain-that-a-doctor-believes-you-but-not-so-much-pain-that-they-discredit-you-as-a-hypochondriac tightrope? The “you don’t look like what I think ‘sick’ looks like” conundrum? Me too. /3
72 doctor's visits later, I’m starting a blog about navigating chronic illness in a world determined to convince young women like myself that we're overreacting. lemonadelife360.wixsite.com/unremarkable/p… The hardest part of chronic illness shouldn’t be convincing your doctors that it’s real. /2
This is so important and relevant! 🔥🔥🔥 The #DisabilityCommunity is a #bigtent. 🎪 #DisabilityTwitter #NEISvoid @AnonsInTheVoid #disabilities #disabled #disabilityinclusion #chronicillness #chronicpain #chronicfolks #chronic #MECFS #LongCovid #autoimmune #Health #women #sick
For #InternationalWomensDay2022 if you've had -fibroids -migraines -eating disorders -ME/CFS -POTS Or any other condition that you've been told you've imagined. Welcome to the disability community. We've been waiting for you. Our community is stronger for your presence.
@AnonsInTheVoid @bennessb good thread 🧵
i wanted to do a little health update with some ME observations I’ve been noting for the last few months, so #pwME feel free to tune in for a personal update on moving from moderate/severe to moderate/occasionally mild (and hope by speaking it outloud i haven’t jinxed it!) 🧵
@AnonsInTheVoid @bennessb Do you have to stay there? Would AirBNB or something similar be an option? Either way would bring an air purifier if you can; can get a decent room sized one for $45.
@AnonsInTheVoid Do you have the support of a medical professional to add distancing as an accommodation? You can add accommodations later in a college career. The limitation is what gets communicated; how they accommodate (single dorm, virtual presence, etc.) is something they have control over.
Hello fellow #chronicfolks. After yrs of procrastination, I'm finally accepting that I need to wear compression socks. I'm petite (US shoe size 5.5/EU 35/36) but have medium-sized calf. Can you recommend brand that doesn't dig in under the knee & isn't difficult to put on?
@AnonsInTheVoid I would suggest off the bat framing it as a requirement for your attendance, if you're comfortable with that - I know pushing too hard can ostracize you Or perhaps, request a roomie who's willing to test daily, with you Good luck 🤍🍀
@AnonsInTheVoid I would start by stating it exactly as you just did. Hopefully, you will get the correct response immediately without having to escalate up the chain or bring printouts of laws. But don't stop advocating. You need this. It's not a want. Your ability to sleep soundly is critical.
@AnonsInTheVoid I'm so very sorry to hear this. I'm praying!
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