Rare Disease

Join the Conversation on
Rare Disease
233K people
0 stories
10.7K posts
About Rare Disease
Explore Our Newsletters
What's New in Rare Disease
All
Stories
Posts
Videos
Latest
Trending
Post
See full photo

What’s the easiest thing for you to keep track of when it comes to your health?

We often talk about how hard it is to manage all of the moving pieces when it comes to living with multiple health conditions (Mighty staffer @xokat often feels like she is playing a game of Chutes & Ladders). But we don’t often shout out the parts that we excel at!

Here are some ideas to get you thinking: tracking medications, scheduling appointments, organizing health care costs, sticking to a specific diet, always following through with your therapy or DBT homework.

What comes easily to you?

#MightyMinute #CheckInWithMe #MentalHealth #Anxiety #Depression #ChronicPain #ChronicIllness #RareDisease #Disability #Caregiving #Undiagnosed #Cancer #ADHD

38 reactions 22 comments
Post
See full photo

Need a distraction? Take our 10-15 minute community survey!

I was diagnosed with lupus last summer and it felt like my entire world cracked open. The seemingly disconnected symptoms and hospitalizations of the past decade clicked into place like plastic train tracks. It also made me feel like I spent over 10 years shouting into the void about what I was going through. Finally (finally!) someone listened, but it took far too long.

And that’s all too common in health care these days, where so many decisions are not sourced directly from patients and caregivers — they’re often assumptions spun up in a vacuum by medical professionals, politicians, insurance companies, and more.

At The Mighty, it’s our forever goal to change that dynamic by elevating the patient and caregiver voice. Our 10-15 minute Humanity in Health Care survey is one step closer to helping us do just that. (Here’s a perk: You’ll also be entered to win an Amazon gift card!)

✏️ If you have the energy, here’s the survey link (it’ll be open until March 10, so you have time!): survey.alchemer.com/s3/7726232/9b1b2b4d2add

P.S. Here are a few of the things we learned about Mighties in past surveys:

💰 77% of Mighties have difficulties paying for or covering costs related to managing their health.

💔 90% of us feel isolated from others due to our health condition(s).

🧺 71% of our community members have problems carrying out daily activities.

#CheckInWithMe #MightyTogether #DistractMe #CheerMeOn #MentalHealth #BipolarDisorder #Anxiety #Depression #Migraine #Lupus #RareDisease #Disability #Caregiving #Cancer #ADHD #Autism #Fibromyalgia

The Mighty's Annual Humanity in Health Care Survey

The Mighty's Annual Humanity in Health Care Survey.
25 reactions 8 comments
Post
See full photo

What do you find most challenging about advocating for your health needs?

Advocating for each of our unique health circumstances requires us to put ourselves out there, share, and communicate how we’re REALLY doing with those around us. This isn’t always easy, especially in spaces with lackluster medical professionals, toxic employers, or less supportive family and friends.

What do you find most challenging when it comes to advocating for your health?

#52SmallThings #MentalHealth #Anxiety #Depression #ChronicPain #ChronicIllness #RareDisease #Disability #CheckInWithMe #Cancer #Autism #ADHD #Caregiving #Trauma

84 reactions 39 comments
Post
See full photo

I need someone to #CheckInWithMe because…

Our #CheckInWithMe program was inspired by the friendship between Mighty staffer @xokat and a fellow spoonie. It was born from the very simple idea that one of the most powerful things we can do for each other is check in without pretense. That can look like checking in when we know the other person is struggling or checking in when one of us conquers a fear or celebrates a success.

And even more importantly, #CheckInWithMe trains our minds to recognize the power in asking others for help — it means we’re better understanding our needs, realizing our boundaries, and being aware of when our physical or emotional batteries are running on low.

So today’s #MightyMinute is going to run a little differently. In the comments below, write about what you’re dealing with and after, reply to another Mighty who needs that check-in. We’d love to see the power of reciprocal support (which is something you all do so well!).

#MentalHealth #Anxiety #Depression #ChronicPain #ChronicIllness #Disability #RareDisease #Autism #Caregiving #Grief #Cancer #Trauma

(edited)
187 reactions 91 comments
Post
See full photo

Abuse

If you're anything like me, you've had your fair share of tragedies and dark moments. This led to years of depression and eventually wanting to make my life. And when I look back, it's easy to blame these events, but all that does is remove the fact that I came through. No one gave me the strength to keep on fighting, I had it in me all along. I just didn't see it until I was in a situation where fighting was my only choice. Now that I've made it this far, I know that when further pain comes, having the strength to keep on going will only come from myself. If you're reading this and dealing with pain, I hope you know that you too can create the same internal strength to keep on going. You already have everything you need to overcome whatever obstacle you are facing right now. Is anyone having difficulty remembering how strong they are or how far they've come? What are some things you've done that prove that you are strong?

~ Thanks to all. Thanks for all. ~

Also, 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:

www.instagram.com/thomas_of_copenhagen

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

220 reactions 41 comments
Post
See full photo

Stripes & Stars of Rare Disease by Melanie R. #RareDisease #ChronicFatigue #MitochondrialDisease #IdiopathicIntracranialHypertension #ChronicPain #InsideTheMighty

Stripes & Stars of Rare Disease
By Melanie R.

Our faith as our anchor.
Our hope’s guiding light!

Amidst all the struggle,
we share in our plight.

Bringing awareness;
to comfort and guide.

To face rare disease
locked arms-
side-by-side.

A journey set forth,
uneven terrain.

Traveling on suffering,
forged purpose in pain.

A chorus of voices
uniting in song-
ring out together,
but battles go on…

Our trials and triumphs,
resilience and strength,
brought us all here
on rare disease day!

So join us in chorus,
wear stripes to support-
our healing begins,
it starts in our heart.

For stripes shine like stars,
by stripes we are healed,
Restoral by scars
Our voices they hear.

Remember Rare Disease Day is February 29th, 2024!
We share in the suffering and the glory!
Stay strong and God bless you all in a mighty, mighty way!

#ChronicIllness #ChronicPain #IrritableBowelSyndromeIBS #ComplexRegionalPainSyndrome #AxonalNeuronalNeuropathies #InsideTheMighty #MightyPoets #MightyTogether #christiansonmighty

(edited)
1 reaction