Rare Disease

Join the Conversation on
Rare Disease
231K people
0 stories
18.4K posts
About Rare Disease
Explore Our Newsletters
What's New in Rare Disease
See full photo

Let go

So often we cause ourselves pain by trying to hold onto something that cannot be controlled. But everything that has a beginning, has an end. It is not a tragedy, but a blessing so that we may experience whatever is next in this life. Is anyone having difficulty with this process?

Finally, I'm so grateful for all of you and would love to get to know you all better outside of The Mighty, so if you're on Instagram, feel free to reach out at:


~ Thanks to all. Thanks for all. ~

Speaking of thanks for all, I was hoping we could acknowledge everyone who comments below. I know it seems like a small gesture, but many people here have never opened up to anyone before and being open and honest with strangers can be quite scary. So, if we could show our gratitude by giving their comment a simple reply or heart, I’m sure they would really appreciate your team support. What do you say?

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

73 reactions 14 comments
See full photo

What helps you during a chronic illness flare?

With a condition as complicated — and misunderstood — as migraine, finding something that provides symptom relief might feel like a needle in a haystack. While there is a lot of trial and error involved when it comes to managing any chronic illness, learning what works for others with the same condition may help expedite the process (that’s why The Mighty exists!). Who better to ask for advice than a community of folks who “get it”?

❤️ Want more tips from people who live with migraine? Then check out the most recent episode of Health and (un)Wellness.

🎧 Listen on Spotify: open.spotify.com/episode/3F6F0spdPdbun3Al0AtJnB

🍎 Listen on Apple Podcasts: podcasts.apple.com/us/podcast/tips-hacks-and-tools-for-manag...

📚 Read the transcript: themighty.com/topic/migraine/mighty-with-migraine-podcast-ti...

#Spoonie #Migraine #Disability #ChronicIllness #ChronicPain #RareDisease #Fibromyalgia #Lupus

Tips, Hacks, and Tools for Managing Migraine

In this episode of Health and (un)Wellness, Mighty staffers with migraine share what works (and what doesn't) for managing their symptoms.
6 reactions 3 comments
See full photo

What’s a health goal you set but find it challenging to implement?

Making short-term — or even long-term — health goals can create a roadmap for you to follow when you’re looking to make decisions about your health. It’s not always easy, though, to implement every goal immediately — especially when you’re met with challenges or barriers. This can be anything from health limits and demands, limiting beliefs, finances, your living situation, or even circumstances that are out of your control. What’s a health goal you set but find it challenging to implement?

#RareDisease #Parenting #Caregiving #Achondroplasia #Dwarfism #SleepApnea #ChronicPain

9 reactions 3 comments
See full photo

How does poetry help you tell your health story?

Poetry, like many other forms of creative writing, can help you weave together words and thoughts that are otherwise hard to express. I know in my health journey, poetry has granted me access to express myself in moments where I thought my words were lost or too jumbled to understand.

How does poetry help you tell your story?

⭐ P.S. Need something to read on the topic? Check out how poetry has help @roksi-mcvi in recent Mighty article here: themighty.com/topic/chronic-illness/chronic-illness-mental-h...

#MightyPoets #Journaling #CheckInWithMe #MentalHealth #Depression #Anxiety #Disability #ChronicIllness #RareDisease #ChronicPain

How Poetry Helps Me Tell My Chronic Illness and Mental Health Story

"Maybe, just maybe, this will inspire someone else to grab that floating thought and just let it go."
8 reactions 3 comments
See full photo

I’d like to improve my communication skills by…

Friday has come at last, Mighties! Great job with this week's self-care challenge 👏.

Our final activity will be to reflect and share about how we can improve our own communication skills.

@sparklywartanks would like to improve her communication skills by being more confident in her own voice and speaking up more.

Share how you would like to improve in the comments below 👇

#52SmallThings #CheckInWithMe #Selfcare #MentalHealth #Disability #ChronicIllness #ChronicPain #RareDisease #Anxiety #Depression

110 reactions 36 comments
See full photo

What’s the best piece of advice you’ve ever received about managing your A1AT?

What's a piece of advice about managing your health that has really stuck with you over the years? It could be something small or big, serious or lighthearted. It could be a tip about drinking more water throughout the day. It might be about finding time to practice self-care or focus on your mental health.

If you’re in a sharing mood, tell us in the comments below. And if you’re looking for some new words of wisdom, give the comments a thorough scroll!

#RareDisease #A1TA #ChronicIllness #Caregiving #LiverDisease #LungDisease #ChronicPain

See full photo

Does physical therapy help you?

For some people, like yours truly, physical therapy is an important part of their treatment plan. For others… not so much. Where do you fall on the spectrum?

Back in January, we asked our rare disease community about the types of therapies they’ve tried to treat their rare disease. Physical therapy was the most popular answer with 34% of votes, while geriatric was the least popular answer at 2%.

Have you tried any of these therapies before? If so, share your experience in the comments. If you haven’t tried any of them, let us know what’s getting in the way of this part of your treatment journey.

Wishing you a low-symptom day!

#RareDisease #ChronicIllness #Disability #ChronicPain #EhlersDanlosSyndrome #Injury #PhysicalTherapy #treatment

3 reactions 1 comment
See full photo

How has your sleep been so far this week?

Sleep can play a vital role in your health and well-being. Many of us know firsthand that sleep can impact our health, and our health can impact our sleep. And if you’re not sleeping “well” or not getting enough sleep, it can be difficult to focus on anything else. So if you feel up to it, share how you’ve been sleeping this week in the comments – and if you have any tips to share for better sleep, we’d love to hear them!

Mighty staffer @sav_bach will get us started! Admittedly, her sleep has not been great this week, but she recently switched from using the regular alarm app on her phone to Sleep Cycle, which is an app that allows you to select a 30-minute window in which you’d like to be woken up and analyzes your sleep patterns to wake you up in your lightest sleep phase during that window. So far, the app – including the alarm sound, which starts quiet and builds in volume – has been helping her wake up feeling less groggy.

#MightyMinute #CheckInWithMe #Insomnia #MentalHealth #Anxiety #Depression #ChronicPain #ChronicIllness #Disability #RareDisease #ChronicFatigue #Caregiving

136 reactions 60 comments