"Panic poops, all day every day.
Solidarity, my IBS-and-anxiety-suffering friend."
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"Before mine was diagnosed, the inflammation started causing serious damage to my brain/nervous system.
Like, bordering on MS symptoms combined with PTSD, but bread-induced. If I had never found out what it was, I could've ended up with gluten encephalopathy or early-onset dementia as a result.
Got gluten-free and I'm genuinely an entirely new person. It's wild."
"Also vestibular migraine and vertigo. It presents differently than regular migraine, and neurologists call vertigo 'benign,' but it's really debilitating. I had BPPV, and even after correcting it, I had chronic migraines, facial pain, and dizziness for eight months after."
"This. It has all the major hallmarks of cancer without actually being cancer. It can spread to the lungs and cause them to collapse. It's even been found in brain and eye tissue. It's a horror show.
And it's dismissed constantly as 'just' painful periods."
"Also, alcohol is fucking everywhere.
Every restaurant has a dedicated menu for it. Every grocery store.
Every meet-up with friends, there's an opportunity. Every celebration, every tribute, every commiseration…. It's at the gas station. It's in your hotel room…"
"Nothing quite like losing interest in literally everything you used to love and having people tell you to just think positive."
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"I had this shit as a side effect of a medication once. Holy shit, the name for this does not do enough to explain how uncomfortable this is.
Ironically, the medication that caused it was one for insomnia. And guess what I'm not doing when I'm resisting the urge to kickbox demons in bed and go for a run all night?"
"I legitimately cannot remember what it is like to not be in pain. But I remember who I was before it. All the things I was able to do. I no longer recognize myself."
"My husband was diagnosed with sleep apnea back in 2021. Before we knew, he would periodically wake up in the middle of the night because he couldn't breathe. His getting a CPAP is a blessing to both his breathing and my ears. Plus he looks like he's ready to blast off in a fighter jet, LOL."
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"Genuinely. It's not just 'a joint disorder.' It's put me in heart, respiratory, and gastrointestinal failure in my 30s."
"You basically have another lifelong full-time job functioning as your pancreas. And for a lot of folks, it's hereditary and not tied to your diet/exercise habits. Plus, in the US, you also have to deal with insurance and the cost of everything. It's infuriating; it's just a misunderstood punchline to too many people."
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"I only recently heard about this. Sounds horrible. Apparently targeted Botox treatment does show some promise, with most patients continuing to burp normally after it wears off, but I doubt it's accessible to everyone who suffers from R-CPD, unfortunately."
"When I started working as an emergency nurse, I was surprised by how many people are affected by this condition. Like, debilitated in some cases. And many of them don't even realize it's a diagnosis; they just live in pain and shame because no one has referred them to a dermatologist and helped them get treatment for it."
Note: Responses have been edited for length/clarity.
The National Alliance on Mental Illness helpline is 1-800-950-6264 (NAMI) and provides information and referral services; GoodTherapy.org is an association of mental health professionals from more than 25 countries who support efforts to reduce harm in therapy.
If you or someone you know is struggling with substance abuse, you can call SAMHSA's National Helpline at 1-800-662-HELP (4357) and find more resources here.
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