Roxie|RISE:FND Warrior Support
Region: US
Thursday 10 September 2026 17:20:28 GMT
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leem1954 :
Well said! I have constantly felt like I have to prove I am sick, with my own family and husband. He seems to think, that having a few good days means I am fine. He denies this, but I can tell from his behavior. However it’s especially heinous to have to prove you’re sick to healthcare professionals! I was have a Myasthenia Gravis exacerbation and the nurses in the ER were horrendous and rude! Ignoring the fact that I struggled with breathing because “my stats look good, so you fine”, or squeeze your hand when I could not because I was so weak… then rolling your eyes! Awful!
2026-09-13 16:05:00
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Change.org :
Hey Roxie! We just reached out about this post — we'd love to collab to drive awareness on this issue ❤️Here's how to find it: 1. Tap your Inbox 2. Top right, tap the crossed-out speech bubble icon (next to the "...") 3. Tap "Filtered requests" 4. That's us — Change.org, blue check ✔️
2026-09-13 19:10:50
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Amanda-Indy’s Fizzin Pixie 🧚 :
Thank you !! Failed back(10/27/25) surgery that caused CRPS just recently diagnosed in April of this year . I always feel like I have to prove myself because people don’t understand what they can’t see . Supposed to be starting trial for spinal cord stimulator on Thursday . Anyways thank you 🙏 for this post . 🧡🧡🧡
2026-09-12 14:11:07
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Saphies :
sadly there are some on tiktok....that just wanted the views with DID, ticks, seizures and more. it was a huge thing. some were true but it made us look like we all faked it.
2026-09-12 22:46:34
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Trish | Zen Between the Chaos :
It's crazy that this is considered cool. I am working on trying to create a new life beyond my chronic illness and it seems to bother people. Like I should either act sick or I'm faking. I don't always want to show the worst parts of my life because it affects my mental health. I need to create boundaries in my own life for myself so I don't live in complete depression and anxiety 24/7. Thanks for this post.
2026-09-13 19:11:35
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jprzgsp❌ :
Ankylosing Spondylitis here. Don’t wish this on anyone bc it’s not just the physical aspect but the mental as well. Just got through RFA procedure that buys about 10-12 month of some pain relief, not to mention monthly medication infusions to slow progression, weekly injections, debilitating fatigue. The list is longer but yeah. It’s not a flex at all.
2026-09-13 01:57:14
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Dave Moore :
Much prayers for you.
2026-09-13 17:27:44
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oilfieldtrash85 :
its not cool at all iv lost my independence
2026-09-11 08:36:29
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Andrea :
I have no idea how it’s true. I have CRPS, Chrons & Gastroparesis. Gastric & colorectal issues and now Esophageal issues have an NG Tube and unable
2026-09-12 18:04:25
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Robin :
if this is cool I don't want to be cool
2026-09-11 00:34:22
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Endowarrior.r.s. :
Maybe out of frustration.... I did. I'm so frustrated about doctors..
2026-09-11 20:36:09
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Roxie|RISE:FND Warrior Support :
Have you ever felt like you had to PROVE your chronic illness or disability was real just to be believed? I’d love to hear your experience. This is exactly why conversations like this matter. We need more understanding, more support, and a lot less judgment. You shouldn’t have to prove your suffering to deserve compassion.
2026-09-10 17:22:16
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Brittany :
ER doctors and nurses get mad at me for having FND and seizures, as if I want to live like this 🤦🏻♀️
2026-09-10 21:57:58
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Bubac82 :
Well I don’t want to be cool anymore…I want off this ride.
2026-09-12 14:09:19
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Bader :
This doesn’t help us! 😑
2026-09-10 23:35:50
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ProjectSweetPea🌈 :
cool, cool? yeah no i cry when I have memories come up on my phone I was living my dreams every single one and I watched them go
2026-09-10 23:09:57
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EpilepticHomesteadMama :
yes this is so frustrating, bc we have to proof everyday that we having rough days and good days etc this is dumb bc for anyone that actually living with chronic illness, we probably wish we didnt have it at all
2026-09-12 19:36:51
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💫💥Jo the Phoenix💥💫 :
so true have you tried ashwagandha
2026-09-11 23:41:00
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bringingbackkaylafnd :
The only time I’ve been considered cool my entire life 😂😂😂 jk no one needs any of this nonsense. FND / Chronic illnesses are enough.
2026-09-10 19:21:16
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Lyla Russell :
I don't want to be trending I want to my boring old self. I would like to shower without having someone sitting there making sure they can catch me if I seize out. and drive my kids around to just feel normal
2026-09-11 19:17:47
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VanTechno :
I’m in this mess because of Covid, so I have FND, dysautonomia, and ME/CFS. But I’ll mention a win from today: my daughter is also disabled now (probably Covid) and saw a cardiologist. The Dr told her he is seeing lots of people like her, and that he can help. My daughter started crying. So at least some medical providers are getting it, even if “opinion writers” are not.
2026-09-10 23:05:06
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htooms26 :
I wouldn’t wish this on anyone.
2026-09-11 01:13:26
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taraedwards1813 :
I wish my illness on no one. Think about living at 10% of your ability everyday... no cool
2026-09-10 20:08:13
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AKgigi Illness🦋Warrior :
This just shows we are finally being heard and seen. I was told to not search or be on social media for it will make things worse. Instead TikTok has given me a voice and a community.
2026-09-12 20:13:02
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evahillman :
Nothing is cool. I would give anything to wake up tomorrow and be able to work again. I worked a year longer than I should have. And I was working 70+ hours a week Ina nursing home. I worked myself into a month’s hospital stay and have spent 2 weeks a month in the hospital. I have been life flighted 3 times from heart problems and chemo I couldn’t handle. I already have serious CTPSD and now I can’t even afford food or rent. I’m sure there are people who want this or take advantage, but chronic illness and incontractable pain are real. And pain management isn’t a thing anymore because hospitals get paid through the opioid stewardship program hospitals get money to not give out pain meds. some days I cry for an hour thinking about getting out of bed to go to the bathroom because of the pain. And lots of people think about dying every day because that’s not a life.
2026-09-10 18:59:19
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