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Hi! I’m new here #AcousticNeuroma #Fibromyalgia #Diabetes #MDD #PTSD #Anxiety #Deaf #HardOfHearing #ChronicFatigue #chronicvertigo

Yes, I have all those issues and more. I just can’t remember all of them! LOL! 😆 I’m single sided deaf from surgery to remove my acoustic neuroma in 2009. They went through the ear and also pushed aside my brain to cut most of the little bugger out. They cut my balance nerve. The other side was supposed to pick up & stabilize me, but it’s lazy. I’m still unsteady after 14.5 years.

My most recent dx’s are chronic kidney disease stage 3a (I can’t remember if it’s a or b. It’s the least affected one. I’m working on reversing it.), C-PTSD from 19 years of raising our 2 kids from Russia (both alcohol affected by birth moms so they have permanent brain damage, delayed development, learning disabilities, ADHD, PTSD, extreme impulsive anger issues & more.) , precancerous colon polyps and diverticulosis. Yeah, fun stuff.

I decided to join this group because of the many different diagnoses I have. Plus my kids having many dx’s too. So, HI! 👋🏼

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Has anyone ever minimized your experience with your illness, just because they thought it was "cool" or "quirky?"

For instance, as someone with Ehlers-Danlos Syndrome, I get asked to perform party tricks that demonstrate my hypermobility. Little do the people asking me to perform those tricks know that EDS also comes with a bevy of co-morbidities, immense pain, fatigue, and countless hours of physical therapy and doctors’ appointments.

So, Mighty community, please share in what ways people have diminished your actual experience with your disease or illness, just because they made assumptions based on your appearance, the party tricks you can do, or a “weird” or “inspirational” story they read online about someone else with your condition.

Your answer may be used in a Mighty story!

#RareDisease #CheckInWithMe #ChronicIllness #ChronicPain #Disability #MentalHealth #TheBendyBunch #EhlersDanlosSyndrome #CysticFibrosis #SpinaBifida #Cancer #KlinefelterSyndrome #AcousticNeuroma #Hemophilia #SUNCTHeadache

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How are you honoring Rare Disease Day?

Rare Disease Day is a global campaign which aims toward equity in social opportunity, health care, and access to diagnosis and therapies for people living with rare disease.

In honor of Rare Disease Day, we’re here to spread some resources and support to anyone living or who loves someone with a rare disease.

📚 About Rare Disease Day:

From The Mighty community:

🦓 Rare Weekly Newsletter:

📍 Living With Rare Disease Group:

From our partner:

🤝 National Organization for Rare Disorders (NORD):

#RareDisease #RareDiseaseDay #ChronicIllness #ChronicPain #MightyTogether #EhlersDanlosSyndrome #CysticFibrosis #SpinaBifida #Cancer #KlinefelterSyndrome #AcousticNeuroma #Hemophilia #SUNCTHeadache #SickleCellDisease

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Resting or Wallowing?

I’m chronically fatigued and pained without a known reason. I do have depression which is treated with medication and CBT and flares up emotionally if I’ve been especially struggling with the fatigue and pain. I know that the *right* level of activity helps with everything, but that level seems to change daily. Wallowing in the depression and physical challenges makes them worse. But I don’t really know how to tell the difference! Any tips on knowing when to rest and when to stop feeling sorry for yourself and get about living life?
#ChronicIllness #Depression #AcousticNeuroma #rest #Selfcare