Rare Disease

Whether it was a vacation to a national park, a trip to another state or country, a visit to a local attraction, a family gathering, a scenic drive through the countryside, or simply a stroll or roll around your neighborhood, let's share about our last memorable adventure! ⛰️

Where was the last place you traveled to or visited, no matter how near or far? What did you enjoy most? What made the trip meaningful or worthwhile? What accommodations, tools, or strategies helped make the trip more accessible or manageable for you?

Feel free to share your experience in the comments below or create your own post in this group!

#ChronicIllness #ChronicPain #RareDisease #MentalHealth #Parenting #Travel #DistractMe #AdaptableTravelers

Some of the most meaningful breakthroughs don’t happen in a lab or operating room—they happen when we truly listen. Sitting down, sharing stories, and learning from lived experiences reminds us that every disability journey is unique, and every voice deserves to be heard.

Whether you’re living with a physical disability, chronic illness, neurodivergence, a rare disease, an invisible condition, or you’re a caregiver or healthcare professional, your story matters. Compassion, understanding, and evidence-based care can bridge the gap between medicine and humanity.

Let’s continue building a community where no one feels unseen, unheard, or alone.

What’s one lesson your health journey has taught you? Share it below—I’d love to hear your perspective.

#disabilityawareness #themighty #chronicillness #invisibleillness #RareDisease #neurodiversity #mentalhealth #physicaldisability #accessibility #inclusion #patientadvocate #caregiversupport #healthcare #medicine #medicaleducation #empathyinmedicine #disabilitycommunity #chronicpain #autoimmunedisease #hope #strongertogether #healthjourney #PatientVoices

A new week, a new theme, Mighties! 💪

This week we'll be focusing on joy. 😊

To get us started, let's think of three words or phrases that come to mind when we hear the word joy.

Mighty staffer @sparklywartanks says the three words and phrases that come up for her are "a bright, sunny day," "worry-free," and "love."

What's yours?

#52SmallThings #CheckInWithMe #Selfcare #MentalHealth #Disability #ChronicIllness #ChronicPain #RareDisease #Anxiety #Depression #AutismSpectrumDisorder #Parenting #PTSD #BorderlinePersonalityDisorder #BipolarDisorder #Fibromyalgia #Lupus #MultipleSclerosis #Migraine #Spoonie

As many of you know, I'm the co-founder of Hird, a company developing technology to help people better understand and improve their focus, stress, and mental effort at work.

One of the ways we want to make a difference is by sharing practical, science-backed knowledge that anyone can benefit from. That's why we're launching Hird Mental Fitness Week.

Every first week of the month, we'll be sharing a short video each day exploring practical strategies to help you improve your focus, manage stress, and support your mental wellbeing at work.

This month's theme is Returning Strong.

If you've just come back from your summer holiday and you're wondering why you're already feeling overwhelmed or mentally exhausted, today's video is for you.

Your brain hasn't forgotten how to work. It's simply switching gears.

I'd love to hear from you. What's the biggest challenge you face during your first week back after a vacation?

Also, if you're going through a tough time right now, I want you to know that I post daily mental health videos about how to deal with painful thoughts. So if you or anyone you know is struggling and wants help, click on one of the links below or write me if you have any questions you want me to answer:

www.instagram.com/thomas_of_copenhagen

www.tiktok.com/@thomas_of_copenhagen

~ Thanks to all. Thanks for all. ~

#MentalHealth #MentalHealth #Depression #Anxiety #BipolarDisorder #BorderlinePersonalityDisorder #Addiction #dissociativedisorders #ObsessiveCompulsiveDisorder #ADHD #Fibromyalgia #EhlersDanlosSyndrome #PTSD #Cancer #RareDisease #Disability #Autism #Diabetes #EatingDisorders #ChronicIllness #ChronicPain #RheumatoidArthritis #Suicide #MightyTogether

This week is a little bit busy. Tomorrow at noon we're going to the Henry Ford medical center for labs. Then we were gonna go out with Pauley's mom but I decided I don't want to. We were gonna make pizza. I wants potato.
On Thursday I have a follow up appointment with my pain specialist. I'm gonna schedule nerve ablation for my lumbar and cortisone injections for my hips. I need to talk to my doctor about the fat deposits along my spine. She doesn't know I had spinal epidural lipomatosis and my surgeon removed a huge amount 3 years ago. According to the MRI, the fat deposits grew back and now I've got more stenosis. Fun times for all.
Oh and it's a rare disease. Of course. Because gods forbid I get the sniffles.
#spinalepidurallipomatosis

Happy Friday, Mighties! 💫

As we wrap up the week (and the month!), let's take a moment to share goals we have when it comes to our overall health, a specific symptom, or your treatment plan.

What's something you hope to better understand? What would you like to be more consistent with? What questions or feedback do you have for your doctor or care team? What challenges do you want to overcome or need clarity to approach?

Feel free to share your goals below! 📋

#MightyMinute #CheckInWithMe #ChronicPain #ChronicIllness #Disability #RareDisease #MentalHealth #Anxiety #Autism #Parenting #PTSD #ADHD #BorderlinePersonalityDisorder #BipolarDisorder #ObsessiveCompulsiveDisorder #EatingDisorders #Depression #Fibromyalgia #Lupus #MultipleSclerosis #Migraine #Spoonie

Let’s broaden our horizons this weekend by trying something new or different. This can look like checking out a new restaurant, trying white noise to help you sleep, traversing a new trail, or starting a new art or craft project! Whatever you want to try, give it a go over the next few days.

What do you want to try?

#52SmallThings #CheckInWithMe #Selfcare #MentalHealth #Disability #ChronicIllness #ChronicPain #RareDisease #Anxiety #Depression
#Autism #Parenting #PTSD #BorderlinePersonalityDisorder #BipolarDisorder #Fibromyalgia #Lupus #MultipleSclerosis #Migraine #Spoonie

👍 Pro: Trying new things can put us in positions to learn and grow our perspectives and skills.
👎 Con: It can also be intimidating, especially when we might not know what to expect or when there’s a possibility for setback or failure.

Mighty staffer @sparklywartanks finds that she holds herself back from trying new things because she’s afraid she might not do a good job in learning or understanding what she needs to be good at in the first place.

What do you think holds you back from trying new things? (P.S. Trial and error is a normal part of life, not everyone succeeds at everything!)

#52SmallThings #CheckInWithMe #Selfcare #MentalHealth #Disability #ChronicIllness #ChronicPain #RareDisease #Anxiety #Depression
#Autism #Parenting #PTSD #BorderlinePersonalityDisorder #BipolarDisorder #Fibromyalgia #Lupus #MultipleSclerosis #Migraine #Spoonie