medical zebra

One distinct part of living with a health condition—especially a rare disease (diagnosed or otherwise)—is having to explain, and re-explain, what it’s like to manage it. Fluctuating, changing, unpredictable, and under-researched symptoms can make it difficult for others to fully understand how to support you or empathize with your experience.

What’s something that’s often misunderstood about living with your rare disease?

💌 Feel free to share with us below.

#RareDisease #ChronicPain #ChronicIllness #GeneticDisorders #MentalHealth #Disability #Migraine #SUNCTHeadache #StiffPersonSyndrome #MedicalZebra #EhlersDanlosSyndrome #Spoonie #MarfanSyndrome #EmptyNoseSyndrome #Syringomyelia #Neurosarcoidosis #BehcetsDisease #FunctionalNeurologicalDisorder

I am in an EDS flare, so quite housebound.
I would like to watch a good movie.
What is your favourite movie? # Eds #POTS #ChronicFatigue #Rare disease #MedicalZebra

Having A Zebra
By: Kailee Rollman

Can no one see the pain painted across my arm?
It creeps up my arm, nerve by nerve.
Across my shoulder and down my body,
It moves faster and faster until
All I can feel is
Pain.
All that’s on my mind is pain.
Screams of agonizing pain can only be heard by my nerves.
They shout back that something is awry.
My nerves relentlessly remind me of the
Game of torment they are having with my bones.
I try to fight back, but to no avail.
The ice and the heat are no match for the zebra.
The zebra that no one will look for,
And no one will see.
I sit in a waiting room as my nerves scream
Pain.
My nerves scream again, but this time they laugh.
They seem proud of themselves for what they've done.
They shot my blood pressure high into the sky,
What a fun little trick that they get to play.
The doctor comes in and my nerves scream again.
Nobody hears their cry, they are silenced by age.
How can a nerve be too young to feel pain?
The nerves scream again as the doctor walks out,
But this time they don’t scream alone.
The heart cries as it feels the emotional torment of being ignored.
The nerves scream in pain.
The lungs let out a sigh of defeat,
They were holding their breath in hope of an answer.
But the brain sobs.
It sobs as it thinks about how it let the whole body down.
How could it have behaved differently?
What could it have done to become visible again?
The whole body cries a deep cry of pain.
The pain of having a zebra;
And not knowing how to take care of it.
The brain cries even longer
As it knows it has to learn how to care for a zebra all by itself.

#ChronicIlless #MedicalZebra

#MedicalZebra Hi everybody i don’t even know where too start. I have epilepsy and a few other conditions but the main is epilepsy so your probably thinking why are you in this group then? well because I have a Super weird type of epilepsy i don’t even know my triggers thankfully it’s under control now thank god for my VNS. But too get too the point I feel like it’d be wrong for me to wear a rare disease shirt because my other conditions are also pretty common I feel like I’d be lieing to people if I did sorry this is so long #MedicalZebra #Upallnight #Epilepsy #Depression

I have made it 2 weeks since my ankle surgery to repair a few tendons and ligaments. I got my stitches out today, 30 total. I now have steri strips to continue healing of the incision. I have a few smaller blisters along the incision and one larger on my ankle bone where I've been having more pain from my walking boot. Surgeon said it's normal and nothing to worry about just to watch it. Has anyone had this happen ? #ChronicIllnessEDS #EhlersDanlosSyndrome #hypermobileehlers-DanlosSyndrome #Surgery #Mobilityaid #Zebra

I'm on day 4 of surgery recovery and have reached regret. It's been a really hard few days my nerve block started wearing off right after surgery, needed lots of pain meds when i woke up . I was in so much pain should have gone to the ER that night. Talked to the surgeon got different meds and did some adjusting of my ankle which made the pain tolerable. But now I'm stressed that I've made a mistake having surgery. The scar is going to much bigger than originally because there was more damaged than what showed on the mri so pretty much multiple surgery In one incision, I won't see it till next Wednesday and I'm starting to freak out #Anxiety #PanicAttacks

Living with rare disease can not only feel rare in the sense of statistics, but also in building community and finding someone to share experiences with. Finding others that relate can be hard. Have you ever met someone that shares your same rare condition? If so, what was that like for you?

Would love to hear your experience! Feel free to share in the comments below.

P.S. If you need a resource to help you connect with others with rare disease, you can check out the nonprofit NORD, a great resource for rare disease patients: rarediseases.org

#RareDisease #ChronicPain #ChronicIllness #GeneticDisorders #MentalHealth #Disability #Migraine #SUNCTHeadache #StiffPersonSyndrome #MedicalZebra #EhlersDanlosSyndrome #Spoonie #MarfanSyndrome #EmptyNoseSyndrome #morgellons #Syringomyelia #Neurosarcoidosis #BehcetsDisease #FunctionalNeurologicalDisorder