Rare Disease

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

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

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

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

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

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

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

No matter how long you've known someone or been in a situation or circumstance, sometimes it's still super challenging to communicate effectively. No judgment here, we totally get it 🙋.

@sparklywartanks says she struggles to communicate effectively when she feels uncomfortable, anxious, or around someone she hasn't spoken to in a long time.

What about you? In what situations is it challenging for you to communicate effectively?

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