Rare Disease

Create a new post for topic
Join the Conversation on
Rare Disease
237K people
0 stories
11.9K posts
About Rare Disease Show topic details
Explore Our Newsletters
What's New in Rare Disease
All
Stories
Posts
Videos
Latest
Trending
Post
See full photo

Who or what do you feel has too much power in your life?

I was scrolling through topics we've reflected on and shared here in The Mighty, and so many got me thinking, especially the ones my thoughts have shifted on over the years. Power, and regaining my sense of autonomy and control, is one of them.

So many factors shape what power dynamics look like in our lives: in the workplace, in public, in our immediate environments and homes, in socio-economic status and resource awareness, and of course in health care.

For me, it's being the eldest daughter in my family and my perception of that role, as well as being a worker and managing my energy in daily life. So much of how I function comes down to my proximity to others and where I fit in other people's lives, but I want to be my own person, do what I want, and exist on my own terms. It's been a challenging year figuring this out.

How about you?

#CheckInWithMe #MentalHealth #Anxiety #Depression #ChronicPain #ChronicIllness #RareDisease #Disability #Parenting #Undiagnosed

Most common user reactionsMost common user reactions 2 reactions • 2 comments
Post
See full photo

When I share my story, I need _________ from that person or audience.

Sharing your story can make you feel a lot of things — overwhelmed, intimidated, liberated, and/or rewarded depending on where you are in your health or recovery journey. It can also feel like all the adjectives above at once.

Everyone has different levels of comfort and needs in times of vulnerability, and both parties can benefit from the telling or receiving of what you have to say.

When you are sharing your story, what do you need from the person or audience that’s listening to you? What would help you to feel safe and comfortable?

Mighty staffer @sparklywartanks says when she shares her story, she needs the audience to listen quietly and empathetically — and not try to interject. She feels most safe when she has the space to think through what she’s saying and finish sharing her thoughts thoroughly.

#52SmallThings #CheckInWithMe #Selfcare #MentalHealth #Disability #ChronicIllness #ChronicPain #RareDisease #Anxiety #Depression
#Autism #Parenting #PTSD #BorderlinePersonalityDisorder #BipolarDisorder #Fibromyalgia #Lupus #MultipleSclerosis #Migraine #Spoonie

Most common user reactionsMost common user reactions 4 reactions • 3 comments
Post
See full photo

Who could benefit from hearing your story?

We’re going back to our truest roots for this week’s self-care theme — storytelling.

Here on The Mighty, there are so many amazing people who share their experiences daily. We all benefit, resulting in a community for those who may share a diagnosis, have a similar experience, or can simply gain perspective through others’ vulnerability.

One thing we know for sure is that each of our stories are important and worth sharing (yes, yours too!), especially in those moments when we need support and a listening ear. When we share our stories, we not only build community, but we also let others know they are not alone.

Who could benefit from hearing yours?

#52SmallThings #CheckInWithMe #Selfcare #MentalHealth #Disability #ChronicIllness #ChronicPain #RareDisease #Anxiety #Depression
#Autism #Parenting #PTSD #BorderlinePersonalityDisorder #BipolarDisorder #Fibromyalgia #Lupus #MultipleSclerosis #Migraine #Spoonie

Most common user reactionsMost common user reactions 4 reactions • 3 comments
Post
See full photo

What is something you do for comfort when you have a tiring, stressful, or overwhelming day?

Let’s talk positive coping strategies and self-soothing techniques today!

When we’ve had a tiring, stressful, or overwhelming day, knowing how to best practice self-care and comfort ourselves can make all the difference —especially when figuring out the ways that effectively help us unwind and recharge.

Mighty staffer @sparklywartanks likes to lay in silence in her dim-lit room, with all of her pillows surrounding her for comfort. It helps her to reground and re-energize.

How do you comfort yourself at the end of an exhausting day?

#52SmallThings #CheckInWithMe #Selfcare #MentalHealth #Disability #ChronicIllness #ChronicPain #RareDisease #Anxiety #Depression
#Autism #Parenting #PTSD #BorderlinePersonalityDisorder #BipolarDisorder #Fibromyalgia #Lupus #MultipleSclerosis #Migraine #Spoonie

Most common user reactionsMost common user reactions 12 reactions • 8 comments
Post
See full photo

Who do you feel most comfortable sharing your symptoms and health experiences with?

Knowing who you can share your story, symptoms, or health experiences with is an important (and very personal) choice that may take some trial and error, and careful deliberation to come to terms with. And that’s OK.

We all have different levels of comfort and trust when it comes to opening up to others. Perhaps you feel most comfortable sharing your health details with a doctor or other health professional, a parent or sibling, a friend, or even a stranger you meet at a grocery store or in an online community like The Mighty!

Who do you feel most comfortable sharing with?

P.S. Your story is important and you deserve community and support from people who understand. 💌

#52SmallThings #CheckInWithMe #Selfcare #MentalHealth #Disability #ChronicIllness #ChronicPain #RareDisease #Anxiety #Depression
#Autism #Parenting #PTSD #BorderlinePersonalityDisorder #BipolarDisorder #Fibromyalgia #Lupus #MultipleSclerosis #Migraine #Spoonie

Most common user reactionsMost common user reactions 2 reactions • 5 comments
Post
See full photo

One thing I’ve learned is that when negative thoughts appear, they can sound incredibly convincing. A thought can repeat itself enough times that eventually it stops feeling like a thought and starts feeling like a fact. I’m failing. This isn’t going to work. I’m not good enough.

What helps me is noticing the thought before automatically agreeing with it. I don’t have to fight it or force myself to think positively. I can simply create a little space and ask, “Is this actually true, or is this just a thought passing through my mind?” That small distinction has helped me give far less power to thoughts that don’t deserve it.

We all have negative thoughts. The goal isn’t to never have them. It’s to get better at deciding which ones deserve our attention.

What is one thought you’re trying to stop treating as a fact?

Also, if you're going through a tough time right now, I want you to know that I post mental health videos about how to deal with painful thoughts. So if you or anyone you know is struggling and wants help, click on one of the links below or write me if you have any questions you want me to answer:

www.instagram.com/thomas_of_copenhagen

www.tiktok.com/@thomas_of_copenhagen

~ Thanks to all. Thanks for all. ~

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

Most common user reactions 11 reactions • 3 comments
Post
See full photo

Where do you go when you want to feel comfortable and safe?

There is nothing more important than finding spaces where we feel safe and comfortable. Whether its physical or virtual, building community around like-minded people or having a space to call your own can help build stability and maintain mental health.

Where are your safe spaces?

Mighty staffer @sparklywartanks says her safe spaces are her room, the living room with her mom, or over Zoom with her therapist.

💖 P.S. The Mighty is always here to be your safe space if you need it.

#52SmallThings #CheckInWithMe #Selfcare #MentalHealth #Disability #ChronicIllness #ChronicPain #RareDisease #Anxiety #Depression
#Autism #Parenting #PTSD #BorderlinePersonalityDisorder #BipolarDisorder #Fibromyalgia #Lupus #MultipleSclerosis #Migraine #Spoonie

(edited)
Most common user reactionsMost common user reactions 10 reactions • 8 comments
Post
See full photo

One thing I’ve learned is that when I’m overwhelmed, whatever I’m feeling in that moment can suddenly feel like the whole truth. The thought feels urgent. The reaction feels justified. And sometimes all I want is to do something immediately just to make the feeling stop.

That’s why I try to give myself a little space before I react. Not because the emotion isn’t real, but because it is real enough to deserve more than an automatic response. Sometimes that space is just a breath or a few quiet minutes. It gives me a chance to ask myself what I actually need, instead of letting the intensity of the moment decide for me.

I don’t always get it right. But I’ve found that even a small pause can change what happens next.

What helps you slow things down when your emotions feel urgent?

Also, if you're going through a tough time right now, I want you to know that I post mental health videos about how to deal with painful thoughts. So if you or anyone you know is struggling and wants help, click on one of the links below or write me if you have any questions you want me to answer:

www.instagram.com/thomas_of_copenhagen

www.tiktok.com/@thomas_of_copenhagen

~ Thanks to all. Thanks for all. ~

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

Most common user reactionsMost common user reactions 11 reactions • 4 comments