Patient Worthy Memes

Ehlers Danlos Syndrome affects the proteins in the

Ehlers Danlos Syndrome affects the proteins in the joints, making them extra flexible or hyper-mobile. This often causes EDS patients to experience joint pain and frequent dislocations.

Thank you to @themightysite for the graphic and survey!

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#raredisease #spoonie #chronicpain #chronicillness #geneticdisease #eds #ehlersdanlossyndrome #ehlersdanlos

Embracing the hardness of your disease can be vita

Embracing the hardness of your disease can be vital to recovering. It’s okay to feel angry and frustrated at your disease. Health means learning to live with the full spectrum of your feelings.

Thank you @worrywellbeing for this graphic!

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#raredisease #chronicpain #chronillness #spoonie #recovery #selfcare

One of our community members has shared this note

One of our community members has shared this note she left on her front door ahead of her building’s annual fire safety inspection. She said “Someone with an awesome immune system might not get sick themselves, but if they get exposed they could still pass it to me. I think it is good to normalize asking for what we need and good to remind people that their staying safe efforts arent just for themselves, but for others.”

Have you advocated for yourself or others in similar ways? Share your experiences in the comments!

#covid19 #immunecompromised #highriskcovid19 #wearamask #immunodeficiency #immunosuppressed

You might have to remind people about the extra bo

You might have to remind people about the extra boundaries to do with your illness. They need to let you sleep in, eat when your hungry, or make room for lots of bathroom breaks. Be kind to yourself and set those boundaries! You will learn what you need and how to get it too.

Thank you @spoonie_village for this graphic!

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#raredisease #chronicpain #spoonie #chronicillness #selfcare

We can all be grateful for that 😌 • • •

We can all be grateful for that 😌

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#raredisease #enfermedadesraras #enfermeras #enfermedadesautoinmunes #spoonie #enfermedadcronica #enfermedadescronicas

On our podcast, advocate Whitney Carter talks abou

On our podcast, advocate Whitney Carter talks about her journey to multiple diagnosis and how it led her to getting involved patient awareness.

Listen. Link in bio 👆👆

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#raredisease #chronicpain #chronicillness #spoonie

On the new podcast, "Fight the Swell," #HAE patien

On the new podcast, "Fight the Swell," #HAE patients discuss balancing school and work: https://bit.ly/3ojRV9Q

It fluctuates 😌 Thank you @decade2doodles for

It fluctuates 😌

Thank you @decade2doodles for this doodle!!

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#raredisease #chronicpain #chronicillness #spoonie

There’s not always a good reason for things we g

There’s not always a good reason for things we go through. Please don’t don’t me this is how it was supposed to be.

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

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#raredisease #chronicpain #spoonie #chronicillness

Find the people who give you energy. Stay with the

Find the people who give you energy. Stay with them for more life.

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#raredisease #chronicpain #chronicillness #spoonie

On our podcast Amy Dahm explained, “The nice thi

On our podcast Amy Dahm explained, “The nice thing about having that service dog is not only do you have an innate, life saving tool, but you also have the companionship. Because it can be very lonely being a patient, and sometimes you don’t want to be around other people. The dog can help you go out and make your invisible illness visible, and that’s tremendously helpful.”

Listen to her story about becoming involved with patient advocacy for Cushing’s disease, and how her dog became her health companion. Episode in bio👆👆👆

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#raredisease #chronicpain #chronicillness #spoonie #cushings #cushingsdisease #cushingssyndrome

Don’t make it weird. Be an ally instead 🤝 Th

Don’t make it weird. Be an ally instead 🤝

Thank you @onceuponagene.podcast for this graphic

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#raredisease #chronicpain #chronicillness #spoonie

Illness isn’t just symptoms, it’s complicating

Illness isn’t just symptoms, it’s complicating all aspects of life.

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#raredisease #spoonie #enfermedadesraras #chronicpain #chronicillness #enfermedadcronica

It’s a Saturday, but I have some good tv 💁‍

It’s a Saturday, but I have some good tv 💁‍♀️

Thank you @rana2.0 for this graphic!

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#raredisease #chronicpain #chronicillness #spoonie

On the new podcast, "Fight the Swell," #HAE patien

On the new podcast, "Fight the Swell," #HAE patients share ways to stay relaxed during a swell: https://bit.ly/3ojRV9Q

Let’s hope for none today 🤞😌 Thank you @f

Let’s hope for none today 🤞😌

Thank you @fibro_what for this picture!

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#raredisease #chronicpain #fibro #fibromyalgia #fibromialgia #enfermedad #enfermedadesautoinmunes #enfermedadesraras

Illness is mental, physical, social, spiritual. It

Illness is mental, physical, social, spiritual. It is not just my body going through pain and growth, it is my whole being.

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#raredisease #chronicpain #chronicillness #spoonie #enfermedadesautoinmunes #enfermeras #enfermedadesraras

Did you know 96% of chronic health conditions are

Did you know 96% of chronic health conditions are invisible? #invisibleillness come with their own set of woes, including having the extent that their health is effected understood. Believe patients.

Thank you @spoonie_village for this post!

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#raredisease #chronicpain #spoonie #chronicillness #disabilities

Institutional design is key to quality of life. If

Institutional design is key to quality of life. If accessibility isn’t considered and prioritized, it won’t happen. We need good design to include varied needs.

Thank you @pacingpixie for this graphic!

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#raredisease #chronicpain #spoonie #chronicillness

The effects of an illness aren’t all listed WebM

The effects of an illness aren’t all listed WebMD. POTS is tiredness and brain fog, but also joints aching after a soccer match and missed sleepovers for doctors appointments.

Thank you @standinguptopots for this graphic!

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#raredisease #chronicpain #chronicillness #spoonie #pots #eds

I want doctors and friends to hear my pain so I kn

I want doctors and friends to hear my pain so I know others understand my experience. Believe our symptoms, stories, suffering. Believe patients.

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#raredisease #chronicpain #chronicillness #spoonie #enfermedades #enfermedadesautoinmunes #enfermedadesraras #enfermedadescronicas

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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.

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