Thankful Thursdays Volume VII- Online Chronic Illness and Disability Communities (Living List of Chronic Illness and Disability Resources)

Welcome back to Thankful Thursdays, my gratitude series running until the USA’s Thanksgiving 2016!

This series is an effort to post more routinely and explore the gratitude available while living with Vascular Ehlers-Danlos Syndrome, POTS and several associated conditions.

Last week, I wrote about the blessing my wheelchair is and how society all too often views wheelchair use negatively.
The week prior I gave thanks for the benefit of Health insurance.
Weeks one through five lamented on very personal aspects of my journey with Ehlers-Danlos Syndrome, specifically on my main support systems: Hubs, Kids, Mother, and also the history of my Nursing Career.
Week seven is also about support systems but rather than repeating myself on the topic, I will highlight my esteemed appreciation for the support of online chronic illness and disability communities.

Twitter along with Tumblr’s chronic illness and disability communities provide a level unmatched by any other therapy or treatment I was ever prescribed. It is the kind of support I never knew existed until searching the internet, desperately trying to put the pieces of my puzzle together.

Somehow, even with all the “real life” family and friends I have on my Facebook account, I’ve never found much support when posting about my chronic illness struggles on that platform. Anytime I do, I get a mix of comments, some supportive, some saturated in ableism but at any rate, more often than not, I feel invalidated and judged whenever sharing the personal details of my Chronic Illness Life with Ehlers-Danlos Syndrome via my personal Facebook account.

Tumblr was the first arena I found support within for my chronic disease. Because my Tumblr account is connected to my Twitter feed, for every blog or re-blog via Stomach-vs-Heart: The Art of Survival on Tumblr, I began connecting with other disabled, chronically ill and neurodivergent peeps on Twitter’s chronically ill and disabled communities through hearts, comments and re-tweets on my Tumblr content.

Soon, I found tons of online activities supporting the chronic illness and disability communities engaged. Despite not having the energy to get out of bed most days, my social calendar is jam-packed with virtual meet ups to commiserate the experience and raise awareness on a multitude of issues affecting our vulnerable population.

This time last year, I was just a lurker on the chronic illness and disability blogs, forums, threads and tags I’m active on today. I recognized myself in most everything posted across these venues.

Reading about others in similar situations increased my awareness about my own passive, internalized ableism towards my disabilities. My confidence to stand up for myself also increased so to the point I was able to push for accurate diagnoses. After spending months of reading chronic illness and disability content, I realized the injustice of denying my pain and distress resulting from my disease processes only worked against my efforts towards “success.”

This time last year, I also realized there is no cure for me and I could potentially have an illness with a prognosis of fifty years old and sudden death.

If it were not for the online communities, my loneliness and isolation would drown my soul. Although I’m blessed with a solid support system in non-cyber life, the benefit of talking with others who truly understand the pain and difficulties in tow with chronic disease and disability surmounts any treatment or therapy I’ve ever received!

I lean on my home support system for practically all my physical needs. The smallest things, even with pacing activities and my wheelchair run me down quickly so I rely on my family for assistance with all my activities of daily living. There are times when I’m worried I might exhaust them, so I avoid talking in much detail of how I really feel each day. The burden is not something they are struggling to understand but more of a fact of life for the last twenty+ years.

I don’t like watching their eyes mist up when I am having a particularly hard-time but instead of keeping these things to myself where they might do more harm, I turn to the support available thru online chronic illness/disability communities. There is a support there real life can’t provide and I am grateful to have access to valuable resources to improve my chronically ill lifestyle experience!

For this Thankful Thursdays, I present my Living List of Chronic Illness and Disability Resources!

“The world is so empty if one thinks only of mountains, rivers & cities; but to know someone who thinks & feels with us, & who, though distant, is close to us in spirit, this makes the earth for us an inhabited garden.” ― Johann Wolfgang von Goethe
“The world is so empty if one thinks only of mountains, rivers & cities; but to know someone who thinks & feels with us, & who, though distant, is close to us in spirit, this makes the earth for us an inhabited garden.” ― Johann Wolfgang von Goethe | Thankful Thursdays Volume VII: Online Chronic Illness and Disability Communities (Living List of Chronic Illness and Disability Resources) | OnlyinthisHead.com: Chronic Illness Life with Ehlers-Danlos Syndrome

This list is in no way all inclusive of the resources available online to those living with chronic illness and/or disability and I hope to update this post with more resources as life presents them. This is list in no particular order as I love all these resources equally. Want me to add your resource to this list? Comment at the end of this post or email me at DawnMeeks80@gmail.com with the link and description of the resource(s). 

The Chronic Illness Bloggers Network by Julie of Counting my Spoons

This list would not be complete if I didn’t include the Chronic Illness Bloggers Network!

Since joining the Chronic Illness Bloggers Network earlier in 2016, my experience is nothing but positive. Joining the network is when I got serious about blogging my journey. I knew getting with a blogger network was crucial to any success. Upon searching for a network catering to bloggers with chronic illness and disablity, CIB Network was the first to come up in the search results. This is no stroke of lucky SEO planning but the actual result of a blogger success story! I’m excited, grateful, and proud member of this growing community. I look forward to the future with a strong blogger network helping me navigate this new path in life!

Chronic Illness BloggersJulie does a exceptional job managing the network and connecting Chronic Illness Lifestyle bloggers with brands focused on improving the quality of chronic illness life! Her blog Counting my Spoons consistently posts chronic illness related, quality content with encouragement and insight into Julie’s journey with Fibromyalgia and wisdom on living a quality life with chronic illness. Working with Julie is proving a great advantage as she provides member blog promotions via the Chronic Illness blogger social networking pages on Twitter, Facebook, Instagram, and Pinterest and she takes great steps to help members stay on track and feel supported while working on campaigns.

The Chronic Illness Blogger Network also hosts a free Chronic Illness Bloggers Resource Blog with many helpful posts on the ins and outs of blogger business. Each week featured “Blogger of the Week” posts highlight member blogs by submission. As my experience with this network grows, so do my connections with others living the chronic illness blogger lifestyle. I’m excited and grateful to join such a reputable blogging network! The awesome opportunities for free products to review for my readers is exactly what I hoped to gain out of joining a blogger network. I can’t express enough positive aspects of joining!

Chronically Badass was the first Tumblr blog I subscribed to after figuring out Ehlers-Danlos Syndrome was the key to all my whack-a-mole symptoms

 

This blog helped me to learn to embrace my negative feelings after finding out the chronic illness I thought I squelched with diet and lifestyle changes was only quelled into a brief remission (because gluten and GMOs are not the source of the problems in Ehlers-Danlos Syndrome). I felt angry and alone in this realization initially but over the following months I found solace in Tia’s blog. I began to feel less resentful towards my negative feelings. In time, I became more apt to treat them with the same care and concern as any good feelings that came alone as well.

ChronicallyBadass’s blog helped me work through my bad experiences last year and concurrently using the coping mechanisms of dark humor and validation for the many physcial and mental pains I experience on a daily basis.

Tia is an artist disabled by Lupus, EDS, and more. Her blog highlights her journey with the tag: #Tia Speaks as well as providing an endless catalog of quality chronic illness content.

One of my favorite things about ChronicallyBadass is how she cares about her followers, often answering many anonymous questions about chronic illness and disability.

Tia’s art blog Savor the Dark showcases powerful images and emotive colors in her art journal. I look forward to watching this artist grow and hope to purchase digital prints in the future but even if she only shares via Tumblr for the rest of all the days, I will continue to re-blog her beautiful and tragically unique art 💚

Tia shares the best of the best aesthetically unique re-blogs from the chronically ill, disabled activist community of Tumblr.

So much satisfying amounts of dark humor.

I feel its an important part of the journey to allow ourselves to laugh at the horrific pain (physcial, mental, and existential types) uncontrollable circumstance creates. As in the above embed, there is nothing wrong with checking in with our negative feelings and it is in fact necessary to avoid undue stress. ChronicallyBadass does this perfectly with posts that resonate relatable with my experience.

Creativeronica on Tumblr

🌟Creativeronica’s chronic illness blog on Tumblr is a constant stream of chronic illness gold!🌟

This was my second blog I followed when “coming out” as chronically ill and disabled.

Creativeronica lives with multiple chronic conditions. She posts chronically-related content and the cutest animal pictures I’ve ever seen!

I love this blog because it balances the negative feelings associated with chronic illness with positive posts to make me smile.

Creativeronica also re-blogs posts that make me remember that little voice is wrong.

In short, Creativeronica’s Blog makes me remember I am not the only one who feels this way sometimes!

Creativeronica is also awesome for sharing many of my blog posts across the Tumblr community. She makes everyone there feel welcome and cared about. Do yourself a favor and go follow her blog right MEOW!

Creativeronica is also a skilled jewelry maker, disabled artist and entrepreneur with her online jewelry store TrueImage Jewelry. I recently ordered from her store and couldn’t be happier with the experience.

I got the pink skull, diamond bracelet and also a free set of matching earrings!

I love Creativeronica’s blog for the fact she shows her compassion and empathy for others in genuine ways. If she isn’t signal boosting or promoting other blogs, she is answering chronic illness questions or sharing questions to help to other Spoonies and disabled bloggers connect. She is a kind soul in the internet world and an asset to the community.

AspieCatLady with Spoonie Film Club on Tumblr

AspieCatLady, formerly known as CatLadyColitisCoping, assembled the Spoonie Film Club. I’ve written about the awesomeness of the Spoonie Film Club here but to summarize, this is a movie night for the chronically ill and disabled community coordinated Thursdays at 7PM EST. You can learn more about how to participate here.

I attended a few movie nights earlier this year, for which I felt welcomed and comfortable to express my difficulties with socialization. AspieCatLady takes measures to ensure the event is accessible for attendees, including captions and trigger warnings while taking frequent polls for movie night suggestions to please all users.

I want to get back into Spoonie Movie Night soon! Chronic illness life with Ehlers-Danlos Syndrome gets in my way at times but over the last several months with different measures to improve my ability to use the computer without severe consequences, I hope to rejoin this exceptional event for those exhausted by socialization outside of the house.

Spoonie Speak and When Tania Talks

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Spoonie Speak is the very first Twitter chat I ever attended.

I found the event searching Twitter for hashtag Spoonie.

I was excited to find out the event is held a few times weekly to accommodate time differences. The objective of the chat is to answer weekly questions revolving around the topic of chronic illness and disability. Coming together in a group I do not have to leave my house for is an extensional blessing as I lack the energy or nerve for my local, in-person support group meetings.

The Most Interesting Main in the World Meme: I don't always attend #SpoonieSpeak on Twitter but when I do I have a great time! | Thankful Thursdays Volume VIII Online
The Most Interesting Man in the World Meme: I don’t always attend #SpoonieSpeak on Twitter but when I do I have a great time! | Thankful Thursdays Volume VII- Online Chronic Illness and Disability Communities (Living List of Chronic Illness and Disability Resources)

To talk about different chronic illnesses and disability topics whilst meeting others going through similar circumstances is a gift in my life. I don’t always get to attend #SpoonieSpeak, but when I do I have a great time!

Anytime I’ve not been able to attend, searching the hashtag brings up all the chat interactions allowing me to browse and comment even if unable to attend the meet. When I do get to attend, the attendees welcome me back with open arms and I always end making new friends.

What’s more is the opportunities for better networking with other chronic illness and disability bloggers! Spoonie Speak is the brainchild of Tania at When Tania Talks, a beauty, fashion and lifestyle blogger living with EDS and associated conditions.

I admire Tania as she is a self-made human providing thoughtful commentary on her experiences with chronic illness, wheelchair use, and disability access all while maintaining a lifestyle full of positive self-care activities. Not only is Tania an accessibility advocate and strong voice in the community but she also provides advertising services with great social media statistics to back up her influence. What I love most about WhenTaniaTalks is how engaged she is within the disability community with #SpoonieSpeak supporting other chronic illness bloggers on many levels.

Sethfan4eva on YouTube and Twitter

Sethfan4eva is my latest find on YouTube in my constant obsession with chrome-casting YouTube videos for entertainment and learning purposes.

Follow @sethfan4eva

In searching the hashtag #SpoonieVlogs on Twitter, I came across the channel Confessions of a Number One Fan and soon found myself immersed in every video available by this talented artist.  The surrealist comedy intermingled with catchy music videos satirically highlights the chronic illness experience. With “dark, musical comedy songs” such as The Ballad of Painsomnia and It Get’s Worse Sethfan4eva is constructing a brand unique but desperately needed in the community.

I call this channel “AdultSwim for Spoonies” as the aberrant, vaudeville content of Confessions of a Number one Fan provides me the same, if not better, feeling I get watching the dark, satirical, and surrealist showcase on comedy central.

The latest project of Sethfan4eva is a hashtag campaign for Twitter called “ArtfulSpoons,” a virtual gallery featuring art by chronically ill, disabled and/or neurodivergent artists. While relatively new on the radar, the buzz from the first event was spectacular!

I participated in the first run of ArtfulSpoons on September 23rd, 2016 and shared the following pieces from my own work

Participating in such an event was a pretty big deal for me. I suffer massive amounts of anxiety when it comes to sharing my creativity. Over the past two years of increasing health problems, I’ve finally found time to do more art. While Chronic Illness Life sucks more often than not, I’m happy to work on my creative endeavors when the energy allows. What’s even greater about having the time to put my energy into creative endeavors is having the confidence to share what I create.

The #ArtfulSpoons Virtual Gallery on Twitter gave me a venue to share my work without much fear of humiliation because I knew others viewing and sharing in the gallery would appreciate my work without judgment. The next #ArtfulSpoons event is October 14th, 2016! Please come join the fun and see Sethfan4eva’s informational video on the event for more details on participation. 

#EDSChat on Twitter

I’ve attended one EDSchat so far on Twitter and it was a great experience connecting with other EDSers to discuss common issues specifically related to the syndrome!

Talking chronic condition specific enables us to feel less alone in our journies and @CurlyWigleyGirl from Around and Upside Down is doing an excellent job coordinating an effort to bring EDSers together to commiserate, brain-storm and learn from each other’s journey!

I recommend starting here if you’re new to Ehlers-Danlos Syndrome and the Twitter Chronic illness Community chats!

Vicky is an active part of the community, sharing her own experience and showing care, concern and compassion for others with her social media presence. Come join @EDSchat on Twitter on Mondays with several different options to accommodate time differences!!

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ChronicBabe™ on YouTube by Jenni Grover Prokopy of ChronicBabe™

Chronic Babe showcases weekly videos on living a quality life while chronically ill to accompany the Chronic Babe™ website which is a growing network for those with chronic illness to connect on many different levels affecting and as a result of living with a chronic health conditions.

While I’m not yet involved in the community over on the website, I look forward to Jenni’s videos each week for inspiration in my own journey as a new chronic illness lifestyle blogger.

Check out the video I’ve embedded below. It is one of my favorite Chronic Babe™ videos!

Chronic Sex Chat on Twitter with Kirstie Schultz

I’ve not gotten to attend nearly as many Chronic Sex Chats on Twitter as I’d like but for the ones I was able to attend it was awesome being able to talk about sex in relation to living with chronic disease. Kirstie is a writer and chronic illness advocate with Still’s disease bringing people together in the discussion of intimate aspects of living a quality life despite concurrent chronic disease processes. I like Kirstie’s style and effort in the community! I look forward to following her projects and attending more chats in the future!

Annie Elainey: Youtuber and Disability Advocate

The line between visible and invisible disability always feels a bit blurred in my personal experience. I need my wheelchair to get around because I can not stand for more than an average of a minute at a time. I use my cane if I know I can make it from my car to a chair in 60 seconds, no standing in line, no stairs, no pedestrian traffic to slow me down. My body is in a race with itself; the moment I stand, the countdown begins until the moment I can no longer bear the pain, if there is no chair, I have to get on the ground. People DO NOT see that. They see the cane but they do not see my internal time bomb, they do not see how hard I am working just to stand up, they do not hear my internal screams in agony, they do not know that when they ran ahead of me to make a line or took the elevator before I could reach it because they were in a hurry and I was "walking too slow", that they created an intense and painful obstacle for me. I have a poker face when it comes to my consistent pain, but even if I wince, that wince is so tardy to the pain I was already experiencing (and most people don't really care about a wince anyway); that feels so invisible to me. #cripplepunk #cpunk #cane #qwoc #disability [Photo: Annie with short lavender hair and glasses, outdoors in front of a brick wall, sitting on a turned over shopping cart, she is wearing black knee braces and is leaning the weight of her left arm on her cane]

A post shared by Annie Segarra 🏳️‍🌈 ♿ ✊🏽 (@annieelainey) on

Annie’s YouTube videos on disability activism, ableism, and #MaketheInternetAccessible campaign opened up my eyes to real issues fighting against those of  us with disabilities. I come from a small, American town with the majority having a limited understanding of awareness issues. Annie Elainey’s work was instrumental in me learning to accept my own disabilities and purge the abilistic ideals ingrained into my perspective by those who would judge me when I couldn’t keep up with life.

One of my favorite moments on Annie’s channel is when she finally got her diagnosis of Ehlers-Danlos Syndrome confirmed. After going through my own ordeal urging my practitioners to investigate the supposedly rare diagnosis, I felt like Annie’s victory was also my own, even though I am beyond the diagnosis part. Please check out the embeded below of Annie sharing her diagnostic journey!

In Sickness +Health Podcasts

I was introduced to the In Sickness + In Health Podcast by my lovely Tumblr mutual @GrandFeeling.

There are a number of episodes available on the Youtube channel, but more importantly, there is also a Patreon for fans of In Sickness + In Health  to help with the costs incurred with the production of the show. This is a wonderful series highlighting the experiences of many advocates known across the chronic illness and disability communities.


As I said, this list is in no way all inclusive of all my favorites!

This comprises a mere sampling. My goal is to frequently update this list as time and energy allow.

As a start to getting a good online support system going, these resources helped me in ways I never imagined possible.

I hope they help you to!

Please comment below with your blog and description so I can check out your work and add you to my list!

There is something to be said for the benefit of online connections when living within the limits of chronic disease and disability. 

For once in my life, I feel a little less awkward or misunderstood as I connect with others who share similar circumstances, characteristics, and struggles. While I’m blessed with a tightly knit support system in my day-to-.day life at home, I am equally blessed to connect with a grand community of activists, advocates and allies available to enhance my understanding of the world and life with chronic disease!

Thanks for reading! Come back next week for Thankful Thursday Volume VIII: Beautiful Music and Soulful Lyricists Commiserating Chronic Disease and Disability where I continue my gratitude exercises by highlighting musical pieces that raise me up when I am down.  As I focus on new topics each week I am challenged to re-frame my perspective of this experience into something positive and productive towards my goals. I hope to also touch the hearts of my fellow community members and raise my voice with all the others calling for awareness!

💖💖💖Until then, I hope the peaks outmeasure the troughs and life is kind💖💖💖

💖💖💖

“Don't waste your time being what someone wants you to become, in order to feed their list of rules, boundaries and insecurities. Find your tribe. They will allow you to be you, while you dance in the rain.” ― Shannon L. Alder | Thankful Thursdays Volume VII: Online Chronic Illness and Disability Communities (Living List of Chronic Illness and Disability Resources) | Only in this Head: Chronic Illness Life with Ehlers-Danlos Syndrome | OnlyinthisHead.com | {Image description the above text overs layes an image of a person sitting on a bed working on a computer.]
“Don’t waste your time being what someone wants you to become, in order to feed their list of rules, boundaries and insecurities. Find your tribe. They will allow you to be you, while you dance in the rain.” ― Shannon L. Alder | Thankful Thursdays Volume VII: Online Chronic Illness and Disability Communities (Living List of Chronic Illness and Disability Resources) | Only in this Head: Chronic Illness Life with Ehlers-Danlos Syndrome | OnlyinthisHead.com | {Image description the above text overs layes an image of a person sitting on a bed working on a computer.]
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