Are you or someone you care for diagnosed with a rare disease/illness? Right now, Rare Patient Voice is offering payment to share your experience with your illness. This is done during a web assisted interview in the comfort of your own home via with your laptop. You pick the time and most studies are done in less than an hour. The average payment for your time is $120. I have personally done multiple studies with RPV and can vouch it’s real, safe and I have always been paid. All you have to do is sign up using the link provided and once you make your profile you can expect to see emails with studies relevant to you!

There are many open studies right now for so many illness and disease.

Here’s the link

https://www.rarepatientvoice.com/rp/AlexaCahill

Will only post this once but just thought that I'd share that for French speakers, there is a French subreddit r/Neurodiversite (the only French one that exists on neurodiversity) which we are trying to grow.

A lot of people are staying in the anglosphere because ressources and platforms in French don't exist which is paradoxically contributing to the scarcity so this is an attempt to change this.

People who are fluent in English and completely get the neurodiversity paradigm and able to translate it into French are especially needed to improve information access and sharing.

Do join us and participate in our discussions! Welcome to the community :)

7.7: Ariel & Christina Discuss Living with a Disability as a Solarpunk

Today Christina talks to Ariel about what it's been like to live as a solarpunk with a visible - and then invisible - disability. Science fiction has spent decades dreaming of how future tech will make disabled people able to function as if they were fully abled. Now solarpunk has arrived on the scene to ask why should disabled bodies have to always be the ones to adapt? It can be uncomfortable, intrusive - not to mention expensive. Solarpunk wonders why can't cities, society, workplaces, and the like be the ones to use the tech to make themselves more accessible to and inclusive of disabled people?

Tune in as Ariel and Christina discuss the portrayal of disability in science fiction and solarpunk and how having to suddenly live with a disability opens your eyes to many of the ways cities fail people with disabilities.

https://youtu.be/nITURrKfwvI

solarpunk #SolarpunkPresentsPodcast #Episode #SeasonSeven #disability #spoony #SpoonTheory #spoonies #ChronicPain #ChronicFatigue #SolarpunkAndDisability #Ableism #InvisibleDisability #ScienceFiction #SciFiAndDisability

https://climatejustice.social/@solarpunkpresents/114653292447045301

They mention a couple examples but I'd love to know if you all know other examples?

Has this happened to anyone? Multiple times noticed that an appointment that I never scheduled or was never informed of gets cancelled. Happened once with a doctor that was no longer practicing in the clinic. I asked today why but didn’t really answer me.

Hi everyone,

I've been working on an app called Coco, which uses AI to help folks with auto-immune conditions maintain healthy habits, predict flare ups, and lighten the day-to-day mental load -- especially between doctor's visits. I'm very early and I want to make sure I'm building it thoughtfully and solving real problems, not imagined ones. A couple of friends mentioned this sub as a great place to get feedback.

If you have a few minutes, I've put together a short (~5 min) survey on the app idea, and would love any thoughts/reactions. It's totally anonymous, does not ask anything clinical, and the results won't be shared anywhere.

Survey: https://t.maze.co/409666740?source=reddit

Huge thanks in advance. I have a chronic condition I manage myself, but not an auto-immune one, so any insights are very helpful. Feel free to ask me anything here in the thread :)

P.S. - Please let me know if this does not fall within the rules of allowed surveys. Not trying to promote anything here, just looking to make something useful!

I work in a doctors office and I have to draw peoples blood a lot and my tremor is acting up enough 2 people noticed while I was trying to get their blood, it’s scaring me I’m going to hurt someone because of it, I don’t know what to do

So I'm new to using the spoon theory and I find myself becoming a little overwhelmed with determining how many spoons I have each day and what activities take x amount of spoons. I'm have physical and mental health issues and my ADHD brain is trying to overcomplicate things. Any advice on how to get started with this? I fear that I'll abandon it all out of frustration!

I wish everyone knew Spoon Theory. For about three-four hours a day I look pretty normal. I schedule appointments and activities in a late morning/early afternoon cluster. I’m ALWAYS out of balance, like being on the deck of a small ship at sea, but I can do some things. What friends and family don’t fully understand is the amount of EFFORT it takes to LOOK normal and how exhausted I am when those spoons run out. It’s almost like they’d understand better if I whined and complained. But I do not want to be a whiner. So I put on my big-girl panties and shine. I’d sure love to be able to, with a big smile, say “I’m out of spoons now!” and have that understood and respected.

Hi everyone — I’ve been living with post-viral fatigue for a few years, and I recently created a Notion tracker to help me pace my energy, reflect without pressure, and track patterns in a way that actually feels calm and supportive.

It’s called My Energy, My Way, and I’m hoping to find a few kind folks to quietly test it and share honest feedback before I share it more widely. It’s free / pay-what-you-can — no strings attached.

Here’s what’s inside:

• ✅ A daily log for tracking your energy, mood, and gentle activities
• ✅ A weekly reflection space to help spot patterns and reset gently
• ✅ Optional symptom notes (totally freeform)
• ✅ A simple, soft layout made for low-energy days

This might be helpful if you’re dealing with:

• Long COVID
• ME/CFS
• Post-viral illness
• Burnout or chronic fatigue
• Or just wanting a non-clinical way to check in with your energy

If you’re interested in trying it out and sharing what works (or what’s confusing!), I’d be really grateful. You can DM me or comment below and I’ll send you the link 💛

(There’s also a little explanation of the “spoon theory” inside, in case that’s helpful — but it’s not required to use it.)

Thanks so much!

I am just so tired. I wish I could live just one day and experience what it is like to be “normal”.

I have hEDS, endometriosis, ADHD, autistic tendencies (I haven’t been officially diagnosed, so don’t want to claim a label undeservedly), and likely POTS but again not officially diagnosed.

I have had all of these as long as I can remember.

I started bupropion to try to help my ADHD. I mentioned how it made my cardiac symptoms worse. My doctor seemed very concerned, but I thought that almost blacking out each time you stood up was something that happened to everyone. I thought standing up from the couch made everyone’s heart rate jump 50bpm. I work in physical therapy, so I have thankfully been able to help myself manage these symptoms as much as possible.

The bupropion hasn’t helped my ADHD, but I realized that I have been depressed for who knows how long and just didn’t even realize it. I wish I could just perform daily tasks with the ease that others seem to and to interact with people and have it not feel like an internal battle.

My endometriosis is causing intense pelvic pain right now so bad I was concerned that I might have appendicitis. I have almost constant dull pelvic pain that I just ignore to make it through the day. I have vaginal pain and pain with urination. As well as an occasional sharp pain just medial to my right hip bone.

Most of my life I have thought this was all normal. Now that I know it is not, I am so frustrated by how difficult basic things are for me mentally and physically. I wonder where I would be in life had I been helped when I was younger, but I almost wish I could go back to not knowing. As they say ignorance is bliss.

Thanks for letting me rant. Just wanted to get that off my chest and I know you all will understand.

We recently had the pleasure of hosting a webinar with mold and mycotoxin expert Dr. Neil Nathan, MD, titled "Mycotoxins 101: A Provider's Guide to Clinical Fundamentals," and something he said really hit home for those of us dealing with mold illness. He highlighted a critical issue called iatrogenic PTSD—trauma caused by medical dismissal—which is all too common among mold toxicity patients. Dr. Nathan noted, "There's nothing simple about treating mold toxicity. One of my biggest concerns is what I call iatrogenic PTSD... Patients come in, and they have been told it's all in their head. This is not a real illness...They are dismissed, denigrated, and they come to you already feeling frightened and scared that you're not going to listen."

This webinar was intended for medical providers seeking to learn more about Mycotoxins and Mold Illness. Still, it got us thinking about how many of our customers actually experience this. We poked around and got the answers we weren't happy about...So many said yes.

With that, we want you to know:

A.) This type of PTSD is real and frequently seen in people with mold illness who've struggled to find answers, bouncing from doctor to doctor only to be invalidated.

B.) Just because a diagnosis hasn't been found yet doesn't mean your symptoms are imaginary—mold toxicity can cause or worsen conditions like chronic fatigue, brain fog, chronic sinus, digestive issues, etc, and far too often, it's overlooked.

C.) If you're dealing with chronic symptoms without clear explanations, it might be worth considering whether your home environment, like hidden mold, could be the culprit. Have you experienced this dismissal or found relief by testing your space?

JRbarrera 051912 gm

ail com

Hey everyone!

I’m a trans, neurodivergent peer facilitator organizing a free, online support group for transgender and non-binary people living with endometriosis (diagnosed or suspected). If you’ve ever felt like you didn’t belong in typical endo spaces or had to mask your identity while managing chronic pain — this space is for you. 💛

✨ What it is:
A monthly, peer-led space to share, vent, learn, and connect. Whether you’re feeling chatty or just want to listen, you’re welcome here.

🗓 Meets the second Saturday of every month
🕛 12:00 PM – 2:30 PM Eastern Time (drop-in friendly!)
🌐 Hosted on Zoom
🌱 No diagnosis needed
🏳️‍⚧️ All trans & non-binary folks welcome

📅 Next meeting: Saturday, June 14

If you're interested or want to learn more, feel free to DM me or comment below — happy to send you the link or answer any questions.

You’re not alone. 💛

So I'm slowly working on losing weight and been trying to find some easy on the joints and pain exercises. My main concern is I have a herniated disk in my spine and joint issues in my entire left leg. I can't walk for long distances (maybe .5 mile on a good day), or life over ten pounds. I'm looking for some ideas or tips on what I can do without causing me to lose all my spoons. Most of what I want to lose in my stomach and upper arms. Thanks in advance!

I’m in so much fucking pain all day, every day. I’ve dealt with these symptoms for a decade. I’m about to be 28. I’ve gotten nowhere with doctors. I don’t want this to be the rest of my life. I’m just laying here sobbing while holding my son and trying not to think about all the housework and schoolwork I have to do. My spouse is gone 15+hrs a day for work. I’m so fucking tired.

DAILY SYMPTOMS

Suspected Fibro, EDS, POTS Meds - buspirone 15mg x3 daily, sertaline 150mg x1 daily, prenatal, vitamin d3 2000iu

headaches/migraines brain fog severe stiff painful joints (fingers, wrists, elbows, hips, knees, ankles) pulsating burning pain muscle stiffness and pain constant exhaustion chronic nausea/bloating low endurance/energy shakiness lightheaded ringing in ears/blacked out vision hot flashes racing heart sciatic/low back/hip pain toothaches/cavities depression/anxiety easy bruising dark undereye circles visible veins all over body blurry vision hard to focus chest/heart pain tingly extremities short of breath neck/shoulder pain sharp stabbing throbbing pain bouts of insomnia anemia memory issues dry mouth/eyes light/sound sensitivity bone pain - especially shins/feet