Rare Disease

Join the Conversation on
Rare Disease
226K people
0 stories
13.6K posts
  • About Rare Disease
  • Explore Our Newsletters
  • What's New in Rare Disease
    All
    Stories
    Posts
    Videos
    Latest
    Trending
    Post
    See full photo

    Finish this simile: I am as ______ as a ________.

    Let's practice similes today! A simile is a figure of speech that compares two unlike things using "like" or "as." Today we are using "as."

    Finish the sentence with the first thing that comes to mind.

    I am as ______ as a ________.

    Mine is: I am as tired as a sloth.

    #MightyPoets #Journaling #CheckInWithMe #MentalHealth #Depression #Anxiety #Disability #ChronicIllness #RareDisease #ChronicPain

    6 reactions 4 comments
    Post
    See full photo

    What have you gained?

    Getting interested in mental health and practicing mental health exercises and mindfulness has easily been the greatest gift I could have ever given myself. It's allowed me to not compare the best in others with the worst in myself, let go of anger, slow down, enjoy peace and quiet, and let life flow. What have mindfulness, therapy, or mental health exercises done for you?

    ~ 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 #ComplexRegionalPainSyndrome

    135 reactions 49 comments
    Post
    See full photo

    Who do you usually go to when you need help with something?

    When we need help, it’s important we feel safe and supported by those around us, or at least have one trusted person to whom we can turn. Do you have a go-to person you can ask for help? Maybe you have different people you seek help from depending on the situation, such as a therapist when you need mental health support or a close friend for social support.

    🥰 Psst! If you don’t have that key support person yet, don’t worry! You’ll find them. (And when all hope seems lost, you always have your Mighty community!) ❤️

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

    42 reactions 30 comments
    Post

    Coping Through the Pain/Anxiety

    What are some coping mechanisms when dealing with the pain? I have had migraines since I was a child but over a year ago I was diagnosed with Idiopathic Intracranial Hypertension (Psuedotumor Cerebi). Now on top of the pain, aura, etc I also get back, neck pain, lightheadedness, dizziness, and severe pain behind the eyes and from my shoulders up. Any day where the pain is less than a 7 is a blessing. I still work full time and push myself through the pain, recently I've noticed myself feeling much worse despite losing weight and my eye doctor saying he didn't see edema behind my eyes. Today it was so bad I went into the restroom and cried and asked myself how much longer can I do this, working full time trying to live life as normally as possible. I can't even walk long distances anymore (I used to walk a few miles a day) without getting short of breath, very light headed, and dizzy and without sharp pain. My family suggested getting a portable wheelchair, which I think at this point I may need. Any advice would be greatly appreciated. Thank you! #chronicmigraine #Migraine #IntracranialHypertension #IdiopathicIntracranialHypertension #IIH #iihwarrior #ChronicPain #RareDisease #CheckInWithMe #BackPain #TheMighty

    17 reactions 6 comments
    Post
    See full photo

    Finish this sentence: Asking for help makes me feel…

    This week we’re exploring the topic of asking for help. To get things started, let’s share a bit about how asking for help makes us feel. This can be a difficult but necessary task that can surface a variety of feelings, such as nervousness, guilt, or shame. On the flip side, asking for help can provide relief, optimism, and a sense of belonging.

    How does asking for help make you feel?

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

    35 reactions 43 comments
    Post

    I'm new here!

    Hi, I'm here because my four year old son (three at the time) was diagnosed with CRMO. I would like to learn all I can about this rare disease

    #MightyTogether

    2 reactions
    Post
    See full photo

    Christmas shopping with my parents! It was so fun!

    I know I am blessed though the rest of me seems a bit rubbish at the moment. I had a doctor's appointment where I was assaulted and now I have PTSD from it.
    It was a gynecological appointment and my first. I left blessing with bruises after being unable to walk, falling to the ground and landing on my hip.

    Sorry I am so behind on messages but I have been trying to focus on mental and emotional health. I am not ignoring you or anything I am just struggling. I am so glad we have a haven like The Mighty. I would be so lost without it.
    I have tried to report the doctor but it seems that they are trying to silence my voice.

    Any advice?

    Meanwhile I am enjoying some awesome new mystery books! I have a new favorite author!

    Thank you Mighty family! ❤️ I am blessed to know each and every one of you!

    #AmplifiedMusculoskeletalPainSyndrome #Arthritis #Asthma #Anxiety #bedbound #ChronicFatigueSyndrome #CheckInWithMe #ChronicPain #ChronicIllness #ComplexRegionalPainSyndrome #PTSD #EhlersDanlosSyndrome #Endometriosis #Depression #Fibromyalgia #Disability #DistractMe #GastroesophagealRefluxDisease #Grief #HypothyroidismUnderactiveThyroidDisease #Insomnia #Lupus #Lymphedema #MightyTogether #PosturalOrthostaticTachycardiaSyndrome #Psoriasis #MentalHealth #MemoryLoss #RareDisease #SuicidalThoughts

    28 reactions 13 comments
    Post
    See full photo

    Mayo Clinic Opportunity of a Lifetime, rare disease

    I am about to miss the biggest greatest opportunity i have fought almost two years for. I was approved for an intense internal medicine program and i could finally get a diagnosis, treatment. management. The pain and neurological symptoms have become too much and i’m only 19, looking for support to help me make this trip happen so i can finish school
    angelinkweb.page.link/e7a45yDCvRFZUVfG8