Spoonie Chat: 2-15-2023

@DawnMGibson founded the The Original #SpoonieChat back in the mists of time, when giant sloths rode unicorns over the tundra. Okay, so it was actually 2013, but that was awhile ago. She can be found hosting it most Wednesdays from 8-9:00 PM ET, on Twitter.

Click here to learn more about participating in Spoonie Chat. 

Click here to learn more about how to find Dawn away from the bird place. 

8:01PM 

Q1: Please share something about yourself. Disclosure of diagnosis or specific circumstances is NEVER required. #SpoonieChat

8:06 PM 

Q2: What's qualities or characteristics of  #disability and #ChronicIllness do outsiders struggle to understand? #SpoonieChat

8:13 PM 

Q3: What  helps our people understand/accept their ill/#disabled selves better? #SpoonieChat 

8:20 PM 

Q4: If you could go back to when thing started getting "serious" with your health/#disability what would you say to your younger self? What did YOU need to know? #SpoonieChat 

8:27 PM 

Q5: What tops 3 things could the people around us do to help us live better lives in acceptance of #disability and #ChronicIllness? #SpoonieChat

8:35 PM

Q6: What "moonshot" project to advance the acceptance of #disability and #ChronicIllness could your Spoonie Fairy Godmother do for you? #SpoonieChat

8:45 PM

Q7: It's time for Closing Thoughts, new topics, and Spoonie Fairy Godmother requests. #SpoonieChat #Disability #DisCo

How to find Dawn off of The Bird Place!

Who is Dawn?

Dawn is a writer, health advocate, and family caregiver. She is a regular columnist with Health Union and has been featured on WebMD. Dawn often represents her communities through media availability and her Twitter presencence. She had a prominent place in Eric Boodman's Edward R. Murrow Award winning piece in STAT News: How medicine erased Black women from a ‘white man’s disease’.

A co-founder! 

Dawn joined the founding board of the National Pain Advocacy Center in 2021 where she also leads the Community Council. She founded the Spoonie Chat Twitter Community in 2013 as an inclusive space for patients to find friendship, support, and empowerment. Over the years, Spoonie Chat has become a community touchstone, bringing patients together no matter what diagnosis they have or phase of life they're in.

Dawn lives in Michigan with her family and a cadre of hand raised butterflies.

What’s next?

Dawn is working to consolidate the Spoonie Chat Community in several settings away from Twitter, including a few new things and the old Facebook page and group.  We haven’t abandoned Twitter, yet. In the mean time, please find her in the following places. Keep in mind, these places are in various stages of repair. Please introduce yourself  if we’re connecting for the first time or under new names. And I love to hear from my friends. 

For Spoonie Chat

Spoonie Chat Facebook Page

Spoonie Chat Facebook Group 

Spoonie Chat Quora Space 

For Dawn

LinkTree

Quora Page 

LinkedIn

Instagram

Cohost 

Spoonie Chat 7-29-2020: Self Care-Part 3 Painsomnia

@DawnMGibson founded the The Original #SpoonieChat back in the mists of time, when giant sloths rode unicorns over the tundra. Okay, so it was actually 2013, but that was awhile ago. She can be found hosting it most Wednesdays from 8-9:00 PM ET, on Twitter.

Click HERE to find out who this Dawn person is and why you should pay attention to what she says about health, disability, and culture. 

Scroll all the way down for some helpful links about managing self-care with painsomnia. 

About Painsomnia

Painsomnia is a patient generated term for the inability to get proper sleep or rest due to chronic pain, its treatments, or sleep related anxieties. It’s a significant issue in the broader patient community.  

Getting Started

8PM  Q1: #SpoonieChat: Disclosure NEVER required. Introduce yourself & share in a way you’re comfortable with.  

Painsomnia 

8:05 PM Q2: #SpoonieChat: How often is #PainSomnia part of your life? What does this mean for you?  

8:12PM Q3: #SpoonieChat: Please share the top 3-5 words or themes you associate with #PainSomnia?  

8:19PM Q4: #SpoonieChat: How does your #PainSomnia manifest? Do you struggle to find a good sleep position, fall asleep, stay asleep, or does something else happen?   

Painsomnia Support 

8:26PM Q5: #SpoonieChat: Are you able to discuss #PainSomnia with your health care provider?

8:33PM Q6: #SpoonieChat: What if any #PainSomnia support have you been offered?  

8:40 PM Q7: #SpoonieChat: What’s in a constructive #PainSomnia response plan? Music? Sounds? Healthy distractions?

8:47 PM Q8: #SpoonieChat Wrapping Up! What do researchers & your doc need to know about #Painsomnia?

Support 

Orchid or Dandelion, we’ve got some painsomnia tips for you. 

My Nighttime Routine For Emergency Situations-link. 

Tips For Painsomnia-link. 

It’s been three years since the painsomnia episode of This AS Life Live! premiered. Please click here so see those chat questions. In that time painsomnia has entered the mainstream in medical literature and Muggle slang. Can you believe it?! Click here to see the video @CreakyJoints & I made at ACR18.  

Spoonie Chat 7-22-2020: Self Care-Part 2

@DawnMGibson founded the The Original #SpoonieChat back in the mists of time, when giant sloths rode unicorns over the tundra. Okay, so it was actually 2013, but that was awhile ago. She can be found hosting it most Wednesdays from 8-9:00 PM ET, on Twitter.

Click HERE to find out who this Dawn person is and why you should pay attention to what she says about health, disability, and culture.

Self Care Resources

1. Click HERE to learn more about making a self-care plan for regular needs and another for emergencies.

2. Click HERE and scroll down to the second paragraph to learn what our friend Kirsten says about self-care. BTW, they’re a genius and one of the main reasons I am here with you in this capacity.

3. Click HERE to read: The Internet Wants To Help You Take Care Of Yourself.

Gathering

8PM Q1: #SpoonieChat: Introduce yourself in a way you’re comfortable with. DX disclosure NEVER required.  

Self Care Messages

8:05 PM Q2: #SpoonieChat: Please share the top 3-5 ideas you associate with #SelfCare &/or conversations about it. http://webauntie.tumblr.com/post/154156627030/spoonie-chat-12-7-2016-what-is-self-care    

8:13PM Q3: #SpoonieChat: What are the best and worst mainstream cultural messages re: #SelfCare? Why?

Mind The Gap

8:21PM Q4: #SpoonieChat: In your opinion, where does the translation of #SelfCare from Muggle to #Disabled /#Spoonie break down? 

8:30PM Q5: #SpoonieChat: What if any "official" guidance or support have you been offered to develop/implement a #SelfCare plan?   

Education

8:38PM Q6: #SpoonieChat: What community based/sourced insights into #SelfCare have been the most helpful? How/why?   

8:45PM Q7: #SpoonieChat: What’s in a constructive flare recovery plan? #SelfCare 

The Bottom Line

8:50 PM Q8: #SpoonieChat Wrapping Up! What do DX-specific foundations, researchers, your providers, and social circle need to know about #SelfCare? 

Spoonie Chat 7-15-2020: Self-Care-Part 1

@DawnMGibson founded the The Original #SpoonieChat back in the mists of time, when giant sloths rode unicorns over the tundra. Okay, so it was actually 2013, but that was awhile ago. She can be found hosting it most Wednesdays from 8-9:00 PM ET, on Twitter.

Click HERE to find out who this Dawn person is and why you should pay attention to what she says about health, disability, and culture.

Gathering

8PM  Q1: #SpoonieChat: Disclosure NEVER required. Introduce yourself & share in a way you’re comfortable with.   

Primary Questions

Self-Care & Wellness Practices  

8:05 PM Q2: #SpoonieChat: In your opinion, what is #SelfCare and what isn't?

8:10 PM Q3: #SpoonieChat: What did you learn about #SelfCare growing up? What about after your health situation became more serious?

8:15PM Q4: #SpoonieChat: What's the hardest aspect of #SelfCare for you? Why? For example: sleep & rest, exercise, diet & hydration, mental health, or other. 

8:22PM Q5: #SpoonieChat: Have you had to relearn or unlearn anything about #SelfCare?  

8:30PM Q6: #SpoonieChat: What would you tell your newly sick or newly diagnosed self about #SelfCare?  

8:37PM Q7: #SpoonieChat: What do outsiders get wrong about #SelfCare with #disability and illness? 

8:44PM Q8: #SpoonieChat: What has the pandemic revealed about #SelfCare? 

8:50PM Q9: It’s The #SpoonieChat WrapUp! Please share your takeaways or something else you'd like us to see. 

Spoonie Chat 7-8-2020: Hangout

@DawnMGibson founded the The Original #SpoonieChat back in the mists of time, when giant sloths rode unicorns over the tundra. Okay, so it was actually 2013, but that was awhile ago. She can be found hosting it most Wednesdays from 8-9:00 PM ET, on Twitter.

Click HERE to find out who this Dawn person is and why you should pay attention to what she says about health, disability, and culture.

About tonight!

We’re just hanging out. NBD.

Gathering

8PM Q1: #SpoonieChat: Disclosure NOT required. Introduce yourself & share what’s happening in your world in a way you’re comfortable with.

About you

8:05PM Q2: #SpoonieChat: What are a few of your favorite things? Why?

8:13PM Q3: #SpoonieChat: What pop culture symbols do you find meaningful? Ex: mermaids, unicorns, emoji… How/why?

Summertime

8:20PM Q4: #SpoonieChat: Does summer pose specific challenges for you? What helps?

8:27PM Q5: #SpoonieChat: What could your #Spoonie Fairy Godmother offer to help get you through this season?

Mood

8:33PM Q6: #SpoonieChat: What helps to protect your mood? How/why?

8:40PM Q7: #SpoonieChat: Which 3-5 activities help to improve your mood? How/why?

8:46PM Q8: #SpoonieChat: Which 3-5 activities do you rely on when distractions are needed?

Closing

8:52PM Q9: The #SpoonieChat WrapUp! Please share your closing thoughts, future topics, post, link, picture, or something else you’d like us to know about.

Q8. #SpoonieChat:

Wrapping Up! What do researchers & your providers need to know about #Painsomnia?

@DawnMGibson founded the The Original #SpoonieChat back in the mists of time, when giant sloths rode unicorns over the tundra. Okay, so it was actually 2013, but that was awhile ago. She can be found hosting it most Wednesdays from 8-9:00 PM ET, on Twitter.

Spoonie Chat is a community for people living with chronic illness and disability. It’s also Dawn’s primary public advocacy platform.

Q: Who is Dawn?

Click HERE to find out who this Dawn person is and why you should pay attention to what she says about health, disability, and culture.

Q: What were we talking about again?

#PainSomnia   

Q: Where are the current #SpoonieChat questions?

A: Click HERE & HERE to go back to this week’s featured posts. 

Q: What’s Spoonie Chat?

A: Spoonie Chat is several things at one time.

1. #SpoonieChat is a Twitter hashtag founded by @DawnMGibson, meant to draw together folx with chronic illness, invisible disabilities, and other differences that shape their lives in profound ways.

People all over the world use this tag to ask questions, share their experiences, and to offer and seek friendship and solidarity. Some users don’t know anything about Dawn or the community, but see that the tag is there for them.

2. Spoonie Chat is also a weekly health & disability themed Twitter Q&A event hosted by Dawn or her designate.

3. Spoonie Chat is also Dawn’s primary public advocacy platform and community organizing space for people living with disability and chronic illness.

Q7. #SpoonieChat:

What’s in a constructive #PainSomnia response plan? Music? Sounds? Healthy distractions?

@DawnMGibson founded the The Original #SpoonieChat back in the mists of time, when giant sloths rode unicorns over the tundra. Okay, so it was actually 2013, but that was awhile ago. She can be found hosting it most Wednesdays from 8-9:00 PM ET, on Twitter.

Spoonie Chat is a community for people living with chronic illness and disability. It’s also Dawn’s primary public advocacy platform.

Q: Who is Dawn?

Click HERE to find out who this Dawn person is and why you should pay attention to what she says about health, disability, and culture.

Q: What were we talking about again?

#PainSomnia  

Q: Where are the current #SpoonieChat questions?

A: Click HERE & HERE to go back to this week’s featured posts.

Q: What’s Spoonie Chat?

A: Spoonie Chat is several things at one time.

1. #SpoonieChat is a Twitter hashtag founded by @DawnMGibson, meant to draw together folx with chronic illness, invisible disabilities, and other differences that shape their lives in profound ways.

People all over the world use this tag to ask questions, share their experiences, and to offer and seek friendship and solidarity. Some users don’t know anything about Dawn or the community, but see that the tag is there for them.

2. Spoonie Chat is also a weekly health & disability themed Twitter Q&A event hosted by Dawn or her designate.

3. Spoonie Chat is also Dawn’s primary public advocacy platform and community organizing space for people living with disability and chronic illness.

Q6. #SpoonieChat:

What if any #PainSomnia support have you been offered?

@DawnMGibson founded the The Original #SpoonieChat back in the mists of time, when giant sloths rode unicorns over the tundra. Okay, so it was actually 2013, but that was awhile ago. She can be found hosting it most Wednesdays from 8-9:00 PM ET, on Twitter.

Spoonie Chat is a community for people living with chronic illness and disability. It’s also Dawn’s primary public advocacy platform.

Q: Who is Dawn?

Click HERE to find out who this Dawn person is and why you should pay attention to what she says about health, disability, and culture.

Q: What were we talking about again?

#PainSomnia  

Q: Where are the current #SpoonieChat questions?

A: Click HERE & HERE to go back to this week’s featured posts.

Q: What’s Spoonie Chat?

A: Spoonie Chat is several things at one time.

1. #SpoonieChat is a Twitter hashtag founded by @DawnMGibson, meant to draw together folx with chronic illness, invisible disabilities, and other differences that shape their lives in profound ways.

People all over the world use this tag to ask questions, share their experiences, and to offer and seek friendship and solidarity. Some users don’t know anything about Dawn or the community, but see that the tag is there for them.

2. Spoonie Chat is also a weekly health & disability themed Twitter Q&A event hosted by Dawn or her designate.

3. Spoonie Chat is also Dawn’s primary public advocacy platform and community organizing space for people living with disability and chronic illness.

Q5. #SpoonieChat:

Are you able to have helpful #Painsomnia discussions with your health care provider?

@DawnMGibson founded the The Original #SpoonieChat back in the mists of time, when giant sloths rode unicorns over the tundra. Okay, so it was actually 2013, but that was awhile ago. She can be found hosting it most Wednesdays from 8-9:00 PM ET, on Twitter.

Spoonie Chat is a community for people living with chronic illness and disability. It’s also Dawn’s primary public advocacy platform.

Q: Who is Dawn?

Click HERE to find out who this Dawn person is and why you should pay attention to what she says about health, disability, and culture.

Q: What were we talking about again?

#PainSomnia  

Q: Where are the current #SpoonieChat questions?

A: Click HERE & HERE to go back to this week’s featured posts.

Q: What’s Spoonie Chat?

A: Spoonie Chat is several things at one time.

1. #SpoonieChat is a Twitter hashtag founded by @DawnMGibson, meant to draw together folx with chronic illness, invisible disabilities, and other differences that shape their lives in profound ways.

People all over the world use this tag to ask questions, share their experiences, and to offer and seek friendship and solidarity. Some users don’t know anything about Dawn or the community, but see that the tag is there for them.

2. Spoonie Chat is also a weekly health & disability themed Twitter Q&A event hosted by Dawn or her designate.

3. Spoonie Chat is also Dawn’s primary public advocacy platform and community organizing space for people living with disability and chronic illness.

Q4. #SpoonieChat:

Please share the top 3-5 words or phrases you associate with #PainSomnia. 

@DawnMGibson founded the The Original #SpoonieChat back in the mists of time, when giant sloths rode unicorns over the tundra. Okay, so it was actually 2013, but that was awhile ago. She can be found hosting it most Wednesdays from 8-9:00 PM ET, on Twitter.

Spoonie Chat is a community for people living with chronic illness and disability. It’s also Dawn’s primary public advocacy platform.

Q: Who is Dawn?

Click HERE to find out who this Dawn person is and why you should pay attention to what she says about health, disability, and culture.

Q: What were we talking about again?

#PainSomnia  

Q: Where are the current #SpoonieChat questions?

A: Click HERE & HERE to go back to this week’s featured posts.

Q: What’s Spoonie Chat?

A: Spoonie Chat is several things at one time.

1. #SpoonieChat is a Twitter hashtag founded by @DawnMGibson, meant to draw together folx with chronic illness, invisible disabilities, and other differences that shape their lives in profound ways.

People all over the world use this tag to ask questions, share their experiences, and to offer and seek friendship and solidarity. Some users don’t know anything about Dawn or the community, but see that the tag is there for them.

2. Spoonie Chat is also a weekly health & disability themed Twitter Q&A event hosted by Dawn or her designate.

3. Spoonie Chat is also Dawn’s primary public advocacy platform and community organizing space for people living with disability and chronic illness.

Q3. #SpoonieChat:

How does your #PainSomnia manifest? Do you struggle to find a good sleep position, fall asleep, stay asleep, or does something else happen?

@DawnMGibson founded the The Original #SpoonieChat back in the mists of time, when giant sloths rode unicorns over the tundra. Okay, so it was actually 2013, but that was awhile ago. She can be found hosting it most Wednesdays from 8-9:00 PM ET, on Twitter.

Spoonie Chat is a community for people living with chronic illness and disability. It’s also Dawn’s primary public advocacy platform.

Q: Who is Dawn?

Click HERE to find out who this Dawn person is and why you should pay attention to what she says about health, disability, and culture.

Q: What were we talking about again?

#PainSomnia  

Q: Where are the current #SpoonieChat questions?

A: Click HERE & HERE to go back to this week’s featured posts.

Q: What’s Spoonie Chat?

A: Spoonie Chat is several things at one time.

1. #SpoonieChat is a Twitter hashtag founded by @DawnMGibson, meant to draw together folx with chronic illness, invisible disabilities, and other differences that shape their lives in profound ways.

People all over the world use this tag to ask questions, share their experiences, and to offer and seek friendship and solidarity. Some users don’t know anything about Dawn or the community, but see that the tag is there for them.

2. Spoonie Chat is also a weekly health & disability themed Twitter Q&A event hosted by Dawn or her designate.

3. Spoonie Chat is also Dawn’s primary public advocacy platform and community organizing space for people living with disability and chronic illness.

Q2. #SpoonieChat:

How often is #PainSomnia part of your life? What does this mean for you?

@DawnMGibson founded the The Original #SpoonieChat back in the mists of time, when giant sloths rode unicorns over the tundra. Okay, so it was actually 2013, but that was awhile ago. She can be found hosting it most Wednesdays from 8-9:00 PM ET, on Twitter.

Spoonie Chat is a community for people living with chronic illness and disability. It’s also Dawn’s primary public advocacy platform.

Q: Who is Dawn?

Click HERE to find out who this Dawn person is and why you should pay attention to what she says about health, disability, and culture.

Q: What were we talking about again?

#PainSomnia  

Q: Where are the current #SpoonieChat questions?

A: Click HERE & HERE to go back to this week’s featured posts.

Q: What’s Spoonie Chat?

A: Spoonie Chat is several things at one time.

1. #SpoonieChat is a Twitter hashtag founded by @DawnMGibson, meant to draw together folx with chronic illness, invisible disabilities, and other differences that shape their lives in profound ways.

People all over the world use this tag to ask questions, share their experiences, and to offer and seek friendship and solidarity. Some users don’t know anything about Dawn or the community, but see that the tag is there for them.

2. Spoonie Chat is also a weekly health & disability themed Twitter Q&A event hosted by Dawn or her designate.

3. Spoonie Chat is also Dawn’s primary public advocacy platform and community organizing space for people living with disability and chronic illness.

Q1. #SpoonieChat:

Disclosure NEVER required. Introduce yourself & tell us something about you. 

@DawnMGibson founded the The Original #SpoonieChat back in the mists of time, when giant sloths rode unicorns over the tundra. Okay, so it was actually 2013, but that was awhile ago. She can be found hosting it most Wednesdays from 8-9:00 PM ET, on Twitter.

Spoonie Chat is a community for people living with chronic illness and disability. It’s also Dawn’s primary public advocacy platform.

Q: Who is Dawn?

Click HERE to find out who this Dawn person is and why you should pay attention to what she says about health, disability, and culture.

Q: What were we talking about again?

#PainSomnia  

Q: Where are the current #SpoonieChat questions?

A: Click HERE & HERE to go back to this week’s featured posts.

Q: What’s Spoonie Chat?

A: Spoonie Chat is several things at one time.

1. #SpoonieChat is a Twitter hashtag founded by @DawnMGibson, meant to draw together folx with chronic illness, invisible disabilities, and other differences that shape their lives in profound ways.

People all over the world use this tag to ask questions, share their experiences, and to offer and seek friendship and solidarity. Some users don’t know anything about Dawn or the community, but see that the tag is there for them.

2. Spoonie Chat is also a weekly health & disability themed Twitter Q&A event hosted by Dawn or her designate.

3. Spoonie Chat is also Dawn’s primary public advocacy platform and community organizing space for people living with disability and chronic illness.