Patient Worthy Memes

Being conscientious of a disability shows us you s

Being conscientious of a disability shows us you see us. Knowing our children may need some thought to be accommodated for shows respect. Compassion means helping us all come into a space with comfort and ease, and we feel your good energy. Thanks for those who are thinking of us 😌

Thank you @amanda.griffith.atkins for this great quote!🌱

•
•
•

•#raredisease #chronicpain #chronicillness #spoonie #chronicfatigue #autoimmunedisease #chronicillnesswarrior #eds #ehlersdanlossyndrome #chronicpainmemes #cysticfibrosis #rheumatoidarthritis #autoimmunedisease

Download the HAE & Me app to support your journey.

Download the HAE & Me app to support your journey. This secure app keeps resources close at hand, shares motivational support from real patients, tracks swells, and helps empower you to have better conversations with your doctor: https://apple.co/2Qt3dMk

The first 2021 RARE on the Road Virtual State-Spec

The first 2021 RARE on the Road Virtual State-Specific Training and Networking event is coming up May 4th for residents of Nevada! Brush up on your rare disease advocacy skills and connect with other advocates in your area.

Registration is now OPEN! Don’t miss the opportunity to build upon the skills and interests already in your toolbelt while virtually meeting others in your state to share experiences and ideas.
Copy and paste the link below to register or go to raretour.org

https://bit.ly/3g4Xqax

#rareontheroad

Repost from the talented @_restingitchface ! “

Repost from the talented @_restingitchface !

“Psoriasis and its damage is more than just skin deep.

It is important to emphasize that psoriasis is more than just plaques and itchy patches. Psoriasis is not merely a skin disease but rather a multi-system inflammatory disease with negative implications for individuals' overall health.

Psoriasis commonly presents on the skin and nails, but a growing body of evidence has suggested that psoriasis is associated with systemic comorbidities. Some of which are joint inflammation, and psoriatic arthritis. There also is a risk for cardiovascular complications and psychosocial disorders. Other conditions in patients with psoriasis include diabetes mellitus, high blood pressure, Crohn disease, and the metabolic syndrome.

The struggles in battling psoriasis is not just wanting to itch your skin off— it’s so much more than that. It’s the pain of not being able to move because everything hurts, it’s the pain of having to endure people staring at you in disgust, it’s the pain of not knowing how long you have to deal with this illness, and it’s the pain of a thousand uncertainties.

Psoriasis is more than just a skin condition that can be treated just by slapping creams and lotions in your body.

Psoriasis more than skin deep— and you are more than just a red rash and a flaky skin. You are more than your psoriasis.”

#WorldPsoriasisDay #psoriasis #psoriasisawareness #psoriasiswarrior #psoriasiscommunity
•#raredisease #chronicpain #chronicillness #spoonie #chronicfatigue #autoimmunedisease #chronicillnesswarrior #eds #ehlersdanlossyndrome #chronicpainmemes #cysticfibrosis #rheumatoidarthritis #autoimmunedisease

#breakasweatforfabry : post a selfie with some swe

#breakasweatforfabry : post a selfie with some sweat, it’s #fabryawarenessmonth! Tell us your Fabry story in the bio.

Thank you @fabryinternationalnetwork for getting the word out on the campaign 🙂

•
•
•
#fabrydisease #fabry #fabryinternationalnetwork #fabryawareness •#raredisease #chronicpain #chronicillness #spoonie #chronicfatigue #autoimmunedisease #chronicillnesswarrior #eds #ehlersdanlossyndrome #chronicpainmemes #cysticfibrosis #rheumatoidarthritis #autoimmunedisease

Sometimes we don’t realize the pain of needing t

Sometimes we don’t realize the pain of needing to constantly try to validate our pain, it makes us question ourselves. Skepticism can cut to our self belief. Remember you are the one in your body.

Thank you @how.u.feeling for this graphic!

•
•
•
#raredisease #chronicpainmemes #chronicillnessandme #chronicpain #chronicillness #spoonie #chronicfatigue #autoimmunedisease #chronicillnesswarrior #eds #ehlersdanlossyndrome #chronicpainmemes #cysticfibrosis #rheumatoidarthritis #autoimmunedisease #autoimmunewellness

Being a caretaker for someone with a disability ma

Being a caretaker for someone with a disability made me appreciate accessible spaces, inclusive communities, how much my child can see that the rest of us can’t. You never know your strength till your forced to pass your limits and learn about the might of our bodies. Shoutout to all of the mighty parents and caretakers who became a new person too in the process 💪🏽💪😌

Thank you @amanda.griffith.atkins for the reminder ✨

•
•
••#raredisease #chronicpain #chronicillness #spoonie #chronicfatigue #autoimmunedisease #chronicillnesswarrior #eds #ehlersdanlossyndrome #chronicpainmemes #cysticfibrosis #rheumatoidarthritis #autoimmunedisease

This week on our podcast, we speak with EMT and na

This week on our podcast, we speak with EMT and narcolepsy advocate Tara O'Conner about her recently published article on PatientWorthy.com. Tara talks about her journey to diagnosis, why narcolepsy is an under-diagnosed condition and ways friends and family can be supportive of someone with the condition. Listen to her story! Link in the linktree in bio!👆👆

•
•
•

•#raredisease #chronicpain #chronicillness #spoonie #chronicfatigue #autoimmunedisease #chronicillnesswarrior #eds #ehlersdanlossyndrome #chronicpainmemes #cysticfibrosis #rheumatoidarthritis #autoimmunedisease

Our good and bad days have a looooong range in bet

Our good and bad days have a looooong range in between! But who’s counting 🌝💛

•
•

•#raredisease #chronicpain #chronicillness #spoonie #chronicfatigue #autoimmunedisease #chronicillnesswarrior #eds #ehlersdanlossyndrome #chronicpainmemes #cysticfibrosis #rheumatoidarthritis #autoimmunedisease

The whole world just got a taste of health insecur

The whole world just got a taste of health insecurity. Now is a good time for people to reflect on how much of this experience isn’t new for the spooner community. We can take this time to integrate the experiences, use this to illustrate what we go through, to show ways life can stay accessible and virtual and aware of those with extra health needs. We are among you, with us, brothers, sisters, teachers, coworkers. Remember us, as life kicks back up.

Thank you @spoonie_village for this reminder 🌟🌝

•
•
•
•#raredisease #chronicpain #chronicillness #spoonie #chronicfatigue #autoimmunedisease #chronicillnesswarrior #eds #ehlersdanlossyndrome #chronicpainmemes #cysticfibrosis #rheumatoidarthritis #autoimmunedisease

All dressed up and ready to stay home 💛🥳 At

All dressed up and ready to stay home 💛🥳 At least we have Instagram!

Thank you @rana2.0 for your many beautiful chronic illness warrior graphics ✨

•
•
•#raredisease #chronicpain #chronicillness #spoonie #chronicfatigue #autoimmunedisease #chronicillnesswarrior #eds #ehlersdanlossyndrome #chronicpainmemes #cysticfibrosis #rheumatoidarthritis #autoimmunedisease

On our podcast, Colby talks to Rachel Sutherland,

On our podcast, Colby talks to Rachel Sutherland, an editor and copywriter with our partners at Snow Companies, shares her #cysticfibrosis story! She talks about her own diagnosis and journey, and the importance of establishing a support system. Listen to her story! Link in the linktree in bio!👆👆

disease advocacy. Listen to her speak, link in the link tree in bio 👆👆
#raredisease #chronicpain #chronicillness #spoonie #chronicfatigue #autoimmunedisease #autoimmunewarrior #autoimmunedisorders

We have been told all of them and more, all of us!

We have been told all of them and more, all of us! So please, no commentary necessary, just questions and care 🌞🌞

Thank you @colourblind_zebra for this lovely graphic 🌟

•
•
•
#abreathofhopefoundationfornmo #raredisease #chronicpain #chronicillness #spoonie #chronicfatigue #autoimmunedisease #autoimmunewarrior #autoimmunedisorders
#enfermedadesraras #enfermedadesautoimmunes #enfermedadescronicas

When you feel pain everyday, you don’t eventuall

When you feel pain everyday, you don’t eventually stop hurting. You just keep hurting, everyday. We get used to it, we having our strategies and tools, but we’re certainly not numb.🖤

Thank you @how.u.feeling for this reminder!!

•
•
•

#raredisease #chronicpain #chronicillness #spoonie #chronicfatigue #autoimmunedisease #autoimmunewarrior #autoimmunedisorders
#enfermedadesraras #enfermedadesautoimmunes #enfermedadescronicas

My illness makes me resilient, empathetic, gratefu

My illness makes me resilient, empathetic, grateful, and alive. Nothing less about that!

•
•

#raredisease #chronicpain #chronicillness #spoonie #chronicfatigue #autoimmunedisease #autoimmunewarrior #autoimmunedisorders
#enfermedadesraras #enfermedadesautoimmunes #enfermedadescronicas

How is this little potato man shared by @rarepatie

How is this little potato man shared by @rarepatientvoice both so adorable + accurate🥺 It’s hard to “do your best” all the time when trying is realllly hard. Your best includes the days you do much less than your best. It’s the ups and downs and everything along the way. It’s riding the waves 🌊🌊

•
•
•

#raredisease #chronicpain #chronicillness #spoonie #chronicfatigue #autoimmunedisease #autoimmunewarrior #autoimmunedisorders
#enfermedadesraras #enfermedadesautoimmunes #enfermedadescronicas

When a child with a chronic illness enters school,

When a child with a chronic illness enters school, dealing with the questions and misunderstanding of youth can be disheartening. It goes a long way to make sure your child has been told about embracing diversity and difference, treating uniqueness with kindness, and the importance in treating a child with disabilities just like any other classmate. Once a child is told to embrace difference, they can usually see past the silly stuff and become an ally. 🙌

•
•
•

#raredisease #chronicpain #chronicillness #spoonie #chronicfatigue #autoimmunedisease #autoimmunewarrior #autoimmunedisorders
#enfermedadesraras #enfermedadesautoimmunes #enfermedadescronicas #enfermedadesmentales

Thank you @arthritis_life_cheryl for reminding us

Thank you @arthritis_life_cheryl for reminding us how many parts of a disease life we share with all our separate ailments. I hope a day with no stressors for you 🙏⚠️💛

•
•

#raredisease #chronicpain #chronicillness #spoonie #chronicfatigue #autoimmunedisease #autoimmunewarrior #autoimmunedisorders

Sometimes I feel like people think my pills give m

Sometimes I feel like people think my pills give me super strength, and I’m just trying to get through the day. I don’t feel I need to justify my health needs.🌱💛

Thank you @thechronicallyhonest for this graphic!

•
•

#raredisease #chronicpain #chronicillness #spoonie #chronicfatigue #autoimmunedisease #autoimmunewarrior #autoimmunedisorders

This week on Wait, How Do You Spell That? Colby ta

This week on Wait, How Do You Spell That? Colby talks to Nick Giallourakis, the co-founder and executive director of Elephants and Tea, a non-profit media outlet dedicated to sharing patient voices in the adolescent and young adult cancer community. Listen to the link I’m the linktree in bio👂

•
•
•#raredisease #chronicpain #chronicillness #spoonie #chronicfatigue #autoimmunedisease #autoimmunewarrior #autoimmunedisorders

Join over 1,000 rare disease stakeholders virtuall

Join over 1,000 rare disease stakeholders virtually at the World Orphan Drug Congress on April 28th 2021 by registering for free with the link below!
The conference has over 50 speakers tackling topics on advanced therapies, clinical development, rare disease advocacy and more.
Register for your free pass today! https://rb.gy/eextes

•
•
•#raredisease #chronicpain #chronicillness #spoonie #chronicfatigue #autoimmunedisease #autoimmunewarrior #autoimmunedisorders

LOAD MORE FOLLOW PATIENT WORTHY ON INSTAGRAM

We believe rare disease patients are people, not a diagnosis. Through education, awareness and some humor, we help patients, caregivers and support persons by providing relevant and often inspirational news and stories.

Our goals are to share stories, cultivate strong community, provide the latest medical findings, connect people and pioneer production of patient worthy information. Help us attain these goals by telling us a little bit about yourself!

Let’s Work Together!

Partner With Us
Submit a Story
Become a Contributor

Keep Up to Date

Subscribe to Our Newsletter
Check Out Rare Events
Get Inspired By Our Memes

Learn More

About Us
Rare Diseases and Conditions
Terms of Use
Privacy Policy
Privacy Policy for CA Residents
EU Privacy Notice

© Copyright Patient Worthy