Rare Disease

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When Your Child With a Rare Disease Doesn’t Feel Brave

Have you ever done something that you knew was the right thing to do, but you were scared to do it? Or maybe you did something that looked hard, but you decided to try it. That is courage in action and you probably felt very good about what you did. And you should! Courage shows [...]

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Glenda McCoy

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Rare Disease

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How My Daughter's Rare Disease Opened My Eyes

When my daughter was first (mis)diagnosed with a rare disease in 2013, not only was I utterly devastated by the news that she had a progressive disease, but I was also shocked beyond reason by the realization that such a disease even existed in the first place. That moment was reality-altering. In fact, I remember very little from that day, except [...]

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Thomas Ousterhout PhD

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@thomas_of_copenhagen

Conquer Your Mind 8h

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Today's mental health exercise

Here’s a little experiment to help you quiet the mind: Close your eyes and become very still. Now silently ask yourself, “What will my next thought be?” and just wait. Watch your mind closely, without chasing anything. The goal isn’t to stop your thoughts, but to observe them from a distance. You might notice that, in the waiting, there’s a pause… a moment of stillness. That space is where peace lives.

This is a gentle way to step out of the constant stream of thinking and into the present. Even 30 seconds of this can shift your energy.

Did you try it? What did you feel in that space? Drop a word below to describe your experience.

~ 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

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How Andrew Took Charge of His Indolent Systemic Mastocytosis Journey

May 15, 2025

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Mighty Minute 10h

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TRUE or FALSE: I am OK not being in control.

Our relationship with control is something we manage daily—whether it's with our environment, our relationships with ourselves and others, our futures, or even our health. Control can offer a sense of stability and predictability, giving us the belief that we can shape outcomes and avoid unwanted surprises.

But the reality is, life is full of constant change and moving parts—especially when you're balancing a health condition alongside everyday responsibilities and other factors. As much as we might try, we can't control every detail all the time.

What are your thoughts? How do you feel about control? Are you OK with not being in control, or do you find it difficult to let go?

Share with us in the comments below! ⬇️

#MightyMinute #CheckInWithMe #ChronicPain #ChronicIllness #Disability #RareDisease #MentalHealth #Anxiety #Autism #Parenting #PTSD #BorderlinePersonalityDisorder #BipolarDisorder #ObsessiveCompulsiveDisorder #EatingDisorders #Depression #Fibromyalgia #Lupus #MultipleSclerosis #Migraine #Spoonie

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52 Small Things 11h

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________ would help me feel more calm about my health.

When you live with a physical and/or mental health condition, it can be challenging to manage the demands, needs, and treatment that come with it. Reaching a state of calm and balance may mean taking intentional steps or seeking help if necessary. (Or it may even look like getting answers!)

What would help you feel more calm about your health?

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

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Share a word or phrase that best captures where you are in your health journey.

What makes us a Mighty community is that our health journeys are all unique and personal to each of us, and despite the challenges and uncertainties, we continue to move forward together. 💚

If you could use only one word or phrase to describe where you are in your health journey right now, what would it be?

🗒️ Note: Feel free to use literal or figurative language to express your word or phrase.

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Matthew

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@matthewrausch

Does this count as trauma or am I just being over dramatic? #RareDisease #Adrenoleukodystrophy #PTSD

I often wondered if I have trauma in my life. I have a rare disease I was diagnosed with. When I was a kid. I had an innocent where I got sick and I almost died. Multiple times I got sick and it almost killed me. Years later in my adult years, things are much better. I'm healthy, living life and stable. However sometimes I have flashbacks of when I was in the hospital dying. I still remember bits and pieces of me in that cold hospital room. Some of the despite treatments the doctors did to keep me alive and what have you. It doesn't cause me any distress as I know it's in the past and things are going to be ok. In fact I feel comfort I don't have to go through these again. Despite these flashbacks causing me no distress. Would that still be trauma?

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Thomas Ousterhout PhD

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@thomas_of_copenhagen

Conquer Your Mind 2d

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Feel Stuck in Depression? Here’s the First Step to Climb Out

If depression feels like a mountain too high to climb… start with one step. Just one.

That’s all you need right now.

Not a perfect plan. Not a complete transformation.

Just the first step forward.

Depression wants you to believe there’s no way out.

But that lie only wins if you never take action.

You don’t need to have it all figured out to begin.

✨ Start your healing today—with one small move.

Maybe it’s this video. Maybe it’s a walk. A journal entry. A deep breath. A call.

Whatever it is… take that step.

What’s one small thing that’s helped you in your mental health journey? Let’s build a list of ideas to support each other 👇

📌 Save this post for the days you feel stuck.

🎥 Watch the full video to learn more about how to do this by clicking on one of the links below:

www.instagram.com/thomas_of_copenhagen

www.tiktok.com/@thomas_of_copenhagen

~ Thanks to all. Thanks for all. ~

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52 Small Things Accountability Buddy

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@52smallthingsaccountabilitybuddy

52 Small Things 2d

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Spend a little time outside today. Write about what you see, feel, and smell.

Harmony isn’t just about how we interact with ourselves and others, but also how we interact with the world and our surrounding environments — both natural and man-made — as well. Today, let’s take a mindful moment, get some fresh air, and share what we experience. 🌇

✍️ When you go outdoors take a note of what you see, feel, and smell.

Share with us what you’ve captured in the comments below! 🌟

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Rare Disease

Related Conditions?

When Your Child With a Rare Disease Doesn’t Feel Brave

How My Daughter's Rare Disease Opened My Eyes

Today's mental health exercise

How Andrew Took Charge of His Indolent Systemic Mastocytosis Journey

TRUE or FALSE: I am OK not being in control.

________ would help me feel more calm about my health.

Share a word or phrase that best captures where you are in your health journey.

Does this count as trauma or am I just being over dramatic? #RareDisease #Adrenoleukodystrophy #PTSD

Feel Stuck in Depression? Here’s the First Step to Climb Out

Spend a little time outside today. Write about what you see, feel, and smell.

Feed for Rare Disease