Rare Disease

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

I’ve been thinking a lot about the moments when I feel my best. I want to not only cherish those moments more, but also create more opportunities to be that version of myself.

For me, I feel like I’m my most authentic self when I’m home with my family, when I’m being creative or creating something, or when I’m sharing my mental health journey. I feel safe and calm in those moments.

What about you? When or where are you your best self?

#CheerMeOn #CheckInWithMe #MentalHealth #Disability #Anxiety #Depression #RareDisease #ChronicPain #ChronicIllness

When you’re searching for answers or an accurate diagnosis, there may be times when you have to see different types of medical professionals that can help you in your health journey. This can mean having to share your story and symptoms to multiple people — often times, over and over and over again — to find the one that’s right for your specific needs.

Whether it’s writing down detailed notes and questions for your appointments, sharing your medical history aloud, or pointing out specific symptoms that have been especially challenging for you, how do communicate your health concerns to new doctors?

What advice would you give to someone who is also undiagnosed?

#Undiagnosed #CheckInWithMe #ChronicPain #ChronicIllness #RareDisease #MentalHealth #Spoonie

Receiving a diagnosis can be a monumental relief, but what happens when the diagnosis doesn’t seem to match your experiences or expectations? Health care providers are not always right, and they don’t have all the answers (though sometimes they do!).

If you’ve ever been unsure or doubtful of a diagnosis you’ve received from a health care provider, have you seen another provider? What’s been your experience with getting a second opinion? Share your experiences in the comments below.

#Undiagnosed #Misdiagnosed #MightyMinute #CheckInWithMe #MentalHealth #Anxiety #Depression #ChronicPain #ChronicIllness #RareDisease #Disability #BipolarDisorder

Whether it’s with strangers, ourselves, or with people we know, we are constantly communicating with those around us. And, like many things in life, practice, familiarity, trust, and other factors can influence how accustomed and comfortable we are with that communication (some more than others).

Who do you communicate most effectively with in your life?

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