Rare Disease

I have a very firm belief that chronic pain changes the entire landscape of friendship in ways that no one can fathom until they themselves become that chronic pain patient.

In my experience, a condition like migraine inherently makes people like me less reliable and less communicative — but neither has been my choice. I know in my soul that I’m still worthy of connection, of love, of support.

Here are my top three qualities that I’m looking for in a friend these days:

💛 Patience
💖 The ability to sit with harsh truths
❤️ Thoughtfulness

What about you?

🎙️ P.S. A few Mighty staffers sat down with me to explore this concept in this week’s newest Table Talk episode! I hope you give it a listen: anchor.fm/mighty-table-talk/episodes/Getting-to-the-Heart-of...

#mightywithmigraine #Migraine #HemiplegicMigraine #Fibromyalgia #ChronicPain #ChronicIllness #Disability #RareDisease

Whether you use an alarm, a calendar, a daily agenda, or other resources, it can be super helpful to have a system set in place that helps you keep track of your important priorities.

Mighty staffer Nina has a daily schedule/outline with time stamps that help her prioritize for the day.

Do you have anything that helps you keep track of your priorities? If you use a specific app, what's it called?

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

Let’s talk about when we each feel like we’re our best selves throughout the course of a normal day.

When do you thrive? Early morning, later morning, early afternoon, right when the sun is in the center of the sky, or maybe when the sun starts to go down? Perhaps you’re the ultimate night owl who really thrives after midnight.

For me, it’s definitely around 12:30 pm after I’ve completed some of my tasks for the day.

What about you? 🌤️🌖

#MightyMinute #CheckInWithMe #ChronicPain #ChronicIllness #Disability #RareDisease #MentalHealth

#Asthma #Anxiety #AmplifiedMusculoskeletalPainSyndrome thy #JuvenileRheumatoidArthritis #Arthritis #bedbound #ChronicFatigueSyndrome #CheckInWithMe #ChronicPain #ChronicIllness #Depression #DistractMe #EhlersDanlosSyndrome #Endometriosis #DistractMe #GastroesophagealRefluxDisease #Fibromyalgia #HypothyroidismUnderactiveThyroidDisease #Insomnia #GastroesophagealRefluxDisease #Lupus #Lymphedema #MentalHealth #MemoryLoss #MightyTogether #RareDisease A

Primary hyperoxaluria type 1 (PH1) symptoms can severely impact and disrupt your daily life. How do you manage your PH1 symptoms? Maybe you drink lots of water or perhaps you’ve found ways to reduce stress or other triggers that may worsen your symptoms. Let's share and help one another in the comments below. 💌

#PH1 #Caregiving #KidneyDisease #KidneyStones #RareDisease

Myths and misconceptions about achondroplasia can make managing the condition even harder and can leave you feeling isolated and misunderstood. If you’ve struggled with stigma as it relates to your achondroplasia journey, you are not alone.

If you feel comfortable sharing, add your experience in the comments section below or read through others.

#RareDisease #Parenting #Caregiving #Achondroplasia #Dwarfism #SkeletalDysplasia #ChronicPain

Sometimes you just want your doctor to ask how you’re really doing or want them to check-in on something you mentioned to them during your last appointment or start a conversation that you’re afraid or nervous to bring up.

Are there any questions or topics you wish your doctor would discuss with you in your appointments? If you feel comfortable sharing, add your questions in the comments section below or read through others.

#RareDisease #Achondroplasia #Dwarfism #skeletal #Parenting #Caregiving #ChronicPain

Living with a health condition can impact many aspects of your life, and one of those things can be prioritization.

From managing your symptoms and energy levels, to doctor visits, and everything in between, sometimes it’s challenging to balance, negotiate, or even set certain priorities. Everything can change on a dime!

How does your health impact your ability to prioritize? Has it made what you need to focus on crystal clear? Or shattered any kind of a blueprint you’ve drawn out?

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

Wouldn’t it be so easy if every time we had a negative or unhelpful thought, we could just pluck it right out of our brain so it wouldn’t routine our day 😩? I would love that.

The thought I would weed out is that I should be more successful or further along in life by now and I’m not doing a good job. 😣

#MightyMinute #CheckInWithMe #ChronicPain #ChronicIllness #Disability #RareDisease #MentalHealth

Here's a cute visualization of how we see our thoughts flying around in our heads. Does this help externalize thoughts from you so that they hurt less?

~ 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 #Suicide #Anxiety #BipolarDisorder #BorderlinePersonalityDisorder #Addiction #dissociativedisorders #OCD #ADHD #Fibromyalgia #EhlersDanlosSyndrome #POTS #PTSD #Cancer #RareDisease #Disability #Autism #Diabetes #EatingDisorders #ChronicIllness #ChronicPain #RheumatoidArthritis #Schizophrenia