Rare Disease

Join the Conversation on
Rare Disease
229K people
0 stories
17.5K posts
  • About Rare Disease
  • Explore Our Newsletters
  • What's New in Rare Disease
    All
    Stories
    Posts
    Videos
    Latest
    Trending
    Post
    See full photo

    In what area of your life are you craving change?

    Some people believe that you can only make changes at certain points in the year — through New Year’s resolutions, when the weather starts to turn, or at the dawn of a new school year. But we think that’s a load of baloney (does anyone say that anymore? 😅).

    So we’re curious… if you could snap your fingers right now and speak a change into existence, what part of your life would you like to see transformed? Switching up health care providers? Shaking up your friendships? Leaving a job or toxic academic environment? Your eating habits or self-care routines?

    Whatever your answer, we are cheering you on! 👏

    #CheckInWithMe #MentalHealth #Anxiety #Depression #MightyMinute #CheerMeOn #ChronicPain #ChronicIllness #Disability #RareDisease #Parenting #ADHD #Trauma

    68 reactions 29 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 #CheckInWithMe #Selfcare #MentalHealth #Disability #ChronicIllness #ChronicPain #RareDisease #Anxiety #Depression

    20 reactions 11 comments
    Post
    See full photo

    TRUE or FALSE: It’s easier for me to advocate for others than for myself.

    Our topic for this week's self-care challenge is self-advocacy.

    When talking about advocacy, we're referring to the skills and understanding to know one's needs and openly and effectively communicate those needs to others, whether that be for ourselves or on behalf of those around us.

    How do you feel about self-advocacy? Do you find it easier to advocate for yourself or for others?

    Share with us in the comments below ⬇️.

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

    75 reactions 53 comments
    Post

    Discrimination against people with a rare disease

    I have hEDS, a difficult diagnosis which took 41 years to get.
    Now I am in University hospital, one of the most up-spaced hospitals in the country. Due to an epileptic seizure.
    I arrived by ambulance after I did not react when a friend rang my doorbell.
    I was desorientated after the seizure. Of course.
    Now I had MRI which was normal, they take my blood pressure 3x per day (what for? I dont have problems with Blood pressure) and found out that the dose of my epileptic medication was too low. What to do? No answer. So I got myself in contact with my neurologist in another friendlier private hospital to ask for advise.
    As I was obviously in a crisis when I arrived.
    Well who wonders.
    I was desorientated.
    My glasses were at home and I have high miopia so that didnt help either to get orientation. I often entered the wrong room because numbers are written in very small letters.
    So now here I am and they want to send me to psychiatric county hospital due to a "crisis". I am in pain, I am weak, I have restless legs, but I guess psychiatry cant change that. They would just make blah blah blah.
    The worst was, they decided over my head about sending me there. I just heared yesterday evening that I need to go to the County psychiatric hospital. Known as one of the worst hospitals in the whole country.
    So now I am fighting to go back home. They cant put me in psychiatric care because of a "crisis".
    And I feel discriminated. I am sure they dont know what hEDS is in psychiatric hospital. I feel discriminated because once again I have to fight for support instead of ignoring my condition.

    Yes, I am very upset.
    And I am ready to go to Media. To get awareness for EDS. Maybe theres a journal which is interested. I will try.

    7 reactions 9 comments
    Post
    See full photo

    Feelings

    What do you guys think about this one? I know for me, I'm grateful for the lows and the challenges I've faced because it gives depth and meaning to the joys and progress that I make. Being sensitive is a great ability to have, especially when we can accept ourselves as we are and give permission for ourselves to feel the full range of the human experience. Do you think your feelings are both a blessing and a curse or maybe only one of them?

    ~ 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 #MentalHealth

    330 reactions 79 comments
    Post
    See full photo

    Do your tasks one at a time

    I know that chores and exercises can seem like a huge pain, which easily makes us want to get through them as quickly as possible. But if you're anything like me, the list of things to do will never end. There will always be more problems to fix, things that need my attention, solutions that need to be found, and so forth. If we attend to these things with the attitude of frustration, irritation, and impatience, we will spend most of our lives miserable. Try to practice doing your tasks one at a time, and give yourself permission to do so peacefully. This will give you so much space in your life and will remove a lot of negative thinking. Is this attitude possible for you? What do you think?

    ~ 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 #MentalHealth

    51 reactions 11 comments
    Post
    See full photo

    Share a positive experience of when you asked for help and received it.

    Sometimes we just need to hear some happy stories, so let’s share a few of the positive experiences we’ve had when it comes to reaching out for help and actually receiving it.

    Following an unpleasant experience in college, Mighty staffer Nina started therapy in 2019 after not seeking help for her mental health for over three years. She was really happy she made the step to ask for help because she then found a really kind and empathetic therapist in return!

    Note: It’s totally OK if you feel you haven’t received the help you deserve and needed in the past. We’re here with you and extend our support in any capacity we can 🌟.

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

    58 reactions 20 comments