Roundups

8 Chronically Ill YouTubers To Follow For Daily Inspiration

From muscular dystrophy to seasonal affective disorder, here are nine YouTubers showing what life with a health condition is really like.

Living with a chronic health condition can be a challenge, and sometimes you just need to look to others to be inspired by other people dealing with the same issues to keep going. In fact, official studies done on the subject have shown that health vlogs can be exceptionally useful as a support system for managing chronic illnesses.

With that in mind, we’ve put together a list of 9 of our favorite YouTubers, who are documenting life with a chronic illness with humor, heart, and honesty. Although the conditions they may be dealing with vary, what unites them is the fact that they are turning their health conditions into a way to support others.

Here are some of the most inspiring users of YouTube who are living every day with chronic conditions and documenting their stories.

We’re a Cool Fam (Marfan Syndrome)

“We’re a Cool Fam” documents the story of the Huffman family (Hans, Jessica and Alyster Blaze) who all suffer from Marfan Syndrome, a genetic connective tissue disorder with symptoms that can include scoliosis, arthritis, hypermobility and heart problems.

They’ve documented everything from the parents’ initial diagnosis to efforts conceiving Alyster Blaze. There’s even a vlog about seeing a genetic counsellor regarding Marfan Syndrome before they started the process. They documented every pregnancy test, including the first successful one.

What really inspires about the Huffmans, though, is the way they don’t let their illness get in the way of living an incredible life. Just check outtheir cruises and birthday parties!

Joe Joe (Lewy Body Dementia)

Lewy Body Dementia is a condition a lot of people might know about (Robin Williams had it) but few have seen with their own eyes, which in turn, creates stigma. That’s something Joe Joe tries to change by showing what life with his mother Molly is really like.

His channel documents everything from what life with Molly was like before her condition, to what she does now that she’s been diagnosed, including painting pottery and getting pedicures. It also unflinchingly documents the hallmarks of dementia like forgetting how to perform basic tasks, his mother’s anxiety of the unknown and and the condition’s progression.

Episode #55 was posted in 2018, and marked the passing away of his beloved mother. In the video’s description, he writes: “She went to battle everyday with Dementia for 10 years. She’s my inspiration and my strength to get through tough times. I hope my Mother, Molly will continue to help thousands, maybe millions of people understand more about Dementia, and give people strength to get through whatever life challenges they might be dealing with”

Joe also started Molly’s Movement, a foundation raising awareness for the condition.

Zach Anner (Cerebral Palsy)

YouTube user Zach Anner has more than 300,000 channel subscribers and 16 million views. His channel is a window into what living with Cerebral Palsy is like, and just how much you can accomplish with a motor disorder.

Outspoken, inspiring, and entertaining at all times, Zach is an entertainer at heart, and his channel features comedy skits, workout videos, and commentary on everything from his thoughts on accessibility at airports to what life is like with Cerebral Palsy.

He’s even been featured in other YouTube channels, like the Cerebral Palsy Foundation’s “Top 10 Things I Wish People Knew About Cerebral Palsy”, Soul Pancake’s “Pimp My Wheelchair” Microsoft’s demo of the Xbox Adaptive Controller.

He’s also written a book called “If at Birth You Don’t Succeed” and recently appeared in ABC-TV’s Speechless.

The Frey Life (Cystic Fibrosis)

Cystic Fibrosis is an inherited condition that affects the lung and other organs, making it hard to breathe. On the The Frey Life, the Frey Family address common CF misconceptions and show what it’s like living with the condition first hand, such as what it’s like flying with a feeding tube, how to take care of service dogs and the best ways to teach kids about CF.

But what really inspires about The Frey Life is the way the family documents the hard times of cystic fibrosis with poise and grace. They show what it’s like to have a a painful day, or one where you struggle to breathe.

What the channel teaches, though, are that these hard days just make you appreciate the good ones all the more. And together, as a family, the Freys have more than the share of those, which they’re happy to share with a large YouTube audience.

Molly Burke (Retinitis Pigmentosa)

Molly Burke is a motivational speaker and YouTube user who was diagnosed at age 5 with Retinitis Pigmentosa, a rare group of eye disorders affecting the retina and leading to blindness. It hasn’t stopped her one bit.

With more than 1.3 million subscribers and over 56 million views, Molly’s channel documents everything from what it’s like getting a tattoo as a blind person to how to describe colours to someone who can’t see. She also covers 4 years with her guide dog and ten things you shouldn’t ask a blind person.

Molly’s even had success beyond YouTube. She was recently featured in a Dove TV ad. She can also be found at her official website.

Glitter Glucose (Type 1 Diabetes)

According to the American Diabetes Association, approximately 1.25 million Americans have Type 1diabetes, but many people outside of that club never think about day-to-day life with that condition.

YouTube user Glitter Glucose posts about everything you never would have thought to ask when it comes to diabetes, and shows the lifestyle changes necessary after diagnosis.

Videos feature her own diagnosis story, thoughts on dating with diabetes and more down-to-earth advice, like why people with diabetes type 1 or 2 should always wear a medical ID in the event of a medical emergency.

Shannon DeVido (Spinal Muscular Atrophy)

Shannon DeVido is a diverse and inspiring comedienne, actress, singer and vlogger who suffers from spinal muscular atrophy, a degenerative condition which means Shannon has to use a wheelchair to get around.

Her channel documents days in the life of her condition, her stand-up comedy appearances all over the country, and, of course, her acting reel. Just her busy schedule is enough to inspire most viewers!

She does a lot more than just vlog, too. Most recently, Shannon starred in the series Difficult People, produced by Amy Poehler and Billy Eichner, which ran until September 2017.

You can also connect with Shannon through her official website.

Sarah Hawkinson (Seasonal Affective Disorder)

Sarah Hawkinson is a YouTube and fashion blogger who lives with Seasonal Affective Disorder, a mood disorder which is estimated to affect as much as 10 million people in the US.

Sarah’s channel documents her daily life, but also speaks out openly about living with the condition, offering practical advice for fellow sufferers who need to know how best to manage their depression.

Her channel covers things like diet, the relationship about social media and mental illness, common myths about the condition, and more personal content like her dealings with self-esteem issues as a fashion vlogger with depression and therapy.

It’s vitally important for people to understand so-called “invisible” illnesses and disabilities, and through her honesty and grace, Sarah Hawkinson makes seasonal affective disorder impossible to ignore.

Instagram Roundups

8 Inspiring #ChronicallyIll Women To Follow On Instagram

By documenting their lives with a health condition, these incredible women are not only fighting stigma and raising awareness, they're helping build communities.

From moms toting perfectly (and expensively) dressed toddlers to travel influencers posting bikini selfies at 5-star tropical resorts, Instagram has no shortage of people showing off curated, unrealistically perfect lives. But there are also amazing activists on social media trying to do something radically different: show the world, in raw, vulnerable detail, what life is like with a chronic illness. These people represent a new wave of anti-ableist sentiment on the Internet, working to raise awareness and fight for other chronically ill people, while also showing that life with a health condition is like any other: a mixture of the good and bad, the beautiful and the ugly, and the painful and the pleasurable. If you want to follow Instagram influencers who help you celebrate life, with or without chronic illness, here are 8 amazing women you should follow.

Chronic Zebra

ChronicZebra

A graduate student in dance therapy, a field usually dominated by able-bodied folks. Instagram user ChronicZebra documents her journey with several chronic illnesses, including Enlers-Danlos Syndrome, Mast Cell Disease, and Dysautonomia, among others. ChronicZebra serves as an example that people with all sorts of conditions can get outside and do what they love, and that they can use resources to help them (like canes, wheelchairs, etc). Follow Mairead for a blend of health tips, real-life experiences, and a healthy dose of feminism and activism, plus some beautiful nature pics.

Just A Little Suga

Ariel Lawrence, aka JustALittle_SUga

Ariel Lawrence, who goes by JustALittle_Suga on Instagram, lives with diabetes and fights hard for representation of people of color in the chronic illness community. “I’ve lived with Type 1 Diabetes for 12 years,” she says.” I’m also a native New Yorker who is passionate about addressing educational inequality, finding a good street festival and West African dance.” Advocating for “diabetics on the margin,” like herself, Ariel’s Instagram is an empowered space which aims to live the change Ariel would like to see.

You Look Okay To Me

Jameisha Prescod, aka YouLookOkayToMe

Jameisha Prescod, or Jam, is a documentary filmmaker in London, who also lives with lupus and other conditions.  She started her account in 2014, and today, it is one of Instagram’s best spaces to connect with other people dealing with chronic illness. She says: “ Not only has the platform started to raise awareness for chronic illness, it’s become a community for chronic illness patients to uplift  and support one another which I think is equally as important as raising awareness.” Find her at YouLookOkayToMe on Instagram.

Leah Javon

Leah Javon

Taleah Javon, who goes by Leah, is a 23-year-old with the chronic illness works, including lupus, Sickle Cell, Crohn’s disease, fibromyalgia, and asthma. Although Taleah has been sick for seven years, a thread of powerful optimism and willpower extends throughout her account. She is graduating with her BS in Psychology this year and wants to be an advocate for sexual assault victims. Follow Taleah for honest posts about her struggles, and a living example of body positivity: she refreshingly embraces the beauty of herself and others, without reinforcing beauty myths or perpetuating shame. Find Leah Javon on Twitter @LeahJavon, and on Instagram.

Abby James

Abby James, founder of TheTiredGirlSociety

Abby James is a wife and mother from Perth, Australia, living with multiple chronic diseases, but she writes especially about Chronic Fatigue Syndrome (CFS), and how she balances the needs of her illness against her needs as a woman, mother, and writer. On her personal Instagram account, she posts beautiful pictures with an ethereal, vintage look, but it’s her founding of the Tired Girl Society that put her on this list. A platform for women with chronic illnesses to connect to one another, the Tired Girl Society gives spoonies a way to connect to one another, and find strength in solidarity. “I truly believe there is life to be lived and celebrated alongside the limitations that chronic illness causes,” she writes. “The Tired Girl Society society is a way to offer that as a safe, vibrant online space.

First Prioritea

Tatiana, aka First Proritea

Tatiana’s various autoimmune diseases, which include psoriasis and digestive problems, caused her to turn to a mostly fruitarian diet for relief. Under her First Prioritea Instagram account, she shares great juicing recipes, as well as tips on what fruits and vegetables to add to your diet to manage flare-ups. Her tips may not work for everyone, but if nothing else, you can see some darn beautiful fruit on her feed.

Fight2Breathe

Cayleigh Haber, aka Fight2Breath

Fight2Breathe is the Instagram account of Caleigh Haber, a two-time lung transplant survivor, who now advocates for others with breathing issues and cystic fibrosis. Through her Instagram account, she shares her recovery story, and aims to raise awareness of CF. It’s the perfect account to look at when you are feeling down about the impact chronic illness can have on your health, because Caleigh is an example of how to face those challenges with bravery and grace.

Prettiest_Unicorn

Elizabeth Kestrel, aka Prettiest_Unicorn

Elizabeth Kestrel, who has cystic fibrosis, fills her Prettiest_Unicorn Instagram account with a fun mix of cosplay and chronic illness awareness, with a few cat pics thrown in for good measure.  She talks about her disease while also discussing the other things that make her life worth enjoying. Her disease doesn’t define her, but it is an important part of who she is, and she communicates that with sincerity, vulnerability, and a wide stream of humor and fun.

 

 

There are many ways to be a chronically ill person, and no wrong way to engage with your own disease. Each of these influencers has taken different routes to share their story and connect with others; hopefully among them you’ll find an account you really enjoy. Social media can be a powerful tool for change, and each of these people has decided to use it to help them make a difference. There’s nothing more incredible than that.

Roundups

8 Books That Can Help Kids & Teens Understand Dementia

When a loved one has Alzheimer's or other forms of dementia, it can be hard to explain what's happening to your kids. But storytelling can help.

Witnessing the mental decline of an elderly relative can be upsetting and confusing for anyone—but especially for children and teens. Natural questions a child might ask: Do they know who I am? Do they still love me? Why can’t they remember? Will this happen to me or my parents? What will happen next?

Thankfully, there are books that can help you answer these questions. Whether your child is in preschool or a teenager, authors have addressed dementia at a variety of age-appropriate levels. If you’re struggling to explain dementia to your kids, here’s some books that can help.

Ages 3-7: Newspaper Hats by Phil Cummings 

When Georgie and her dad visit Grandpa, Grandpa cannot remember Georgie… but he does remember how to make paper hats. The two bond over creating hats for other residents in his home. These paper hats become a metaphor for dementia that children can understand when Georgie’s hat blows away and she runs after it, similar to what’s happening to Grandpa’s memories. Paper Hats is an excellent book that teaches young children that just because someone might have problems remembering, it doesn’t mean that they aren’t Grandma or Grandpa anymore. [Buy it on Amazon]

Ages 4-8: Forget Me Not by Nancy Van Laan

When Grandma starts forgetting names and losing track of where she parked her car, Julie and her family become worried. But when they find Grandma wandering the neighborhood, they need to make an important decision: for her own safety, Grandma must be moved from her home to an assisted living community. Julia is upset by this change, but eventually recognizes that Grandma is both happier and safer in her new place. In Forget Me Not, Van Laan delicately explores the stage of moving an elderly relative into a safer environment, a topic that may be hard for children to understand and accept. [Buy it on Amazon]

Ages 5-8: What’s Happening To Grandpa? by Maria Shriver

Kate loves to listen to Grandpa’s stories, but when he starts repeating the same story over and over again, Kate becomes confused. Then Grandpa forgets Kate’s name. After her mother explains about Alzheimer’s, Kate decides she wants to help Grandpa. Together, they create a photo album of old pictures, so Grandpa can capture the stories and memories he still has. The book provides simple, clear facts about Alzheimer’s so children can understand what happens to their loved ones as the disease progresses. [Buy it on Amazon]

Ages 5-10: Weeds in Nana’s Garden by Kathryn Harrison

When a young girl discovers weeds in Nana’s garden, she learns that her grandmother is suffering from Alzheimer’s, which tangles up her brain just like weeds do to flowers. As Nana declines, the weeds grow thicker, until the young girl learns to accept her new role in the family, and becomes the garden’s caregiver. Based on her own personal experience with her mother’s dementia and her daughter’s observation was that it was like weeds, the end of Harrison’s book provides a series of questions and answers that can help children better understand the disease. [Buy it on Amazon]

Ages 8-12: The Brilliant Fall of Gianna Z. by Kate Messner

Middle schooler Gianna Z. is in a race against time. If she doesn’t finish her science project, she might lose her spot at the cross-country sectionals – and she only has one week! But in addition to being distracted by mean girls, cute boys, an arch-nemesis trying to steal her spot on the team, and a father who embarasses her by driving her to school in the family hears, her grandma Nonna has started showing signs of forgetfulness. The Brilliant Fall of Gianna Z. shows that as sad as a relative’s dementia can be, life still goes on. [Buy on Amazon]

Age 12 and Up: Curveball: The Year I Lost My Grip By Jordan Sonnenblick

After an injury benches 8th grader Peter Friedman from his place as the star pitcher on his baseball team, he turns to his grandfather, a famous photographer, for guidance. Yet even as he teaches him photography, Peter Friedman can see something wrong…  something his own parents refuse to believe is real. This relatable story for young adults not only shows the early warning signs for dementia, it shows the different ways in which relatives can react when a loved one is sick. [Buy on Amazon]

Age on 12: Remember This by S.T. Underdahl

Summer will be great – Lucy Kellogg just knows it. Her beloved grandmother, Nana Lucy, is coming for a visit. But when Nana arrives, she isn’t the same: the poised woman who always told her “remember this: I love you,” has been diagnosed with Alzheimer’s and is now forgetting things. As an Amazon reviewer notes, “Bits of sound medical advice are skillfully threaded through the fibers of this beautiful, touching story, and allow the reader to come a little closer to understanding the seriousness of this tragic condition.” More than that, Remember This shows that just because someone has Alzheimer’s doesn’t mean they stop loving you, or being worthy of love. [Buy on Amazon]

For Teenagers: The Story of Forgetting: A Novel by Stefan Merrill Block

After his mom is diagnosed with a rare form of early-onset Alzheimer’s, teenager Seth Waller goes on a quest to locate his mother’s lost relatives and learn the truth about her genetic history. He discovers Abel Haggard, an elderly man with a hunchback who lives at his family’s formet farm, and learns about Isidora, a love story set in a fantasy world that connects both Abel and his mother. Combining myth, science and storytelling, Block provides readers with an abundance of medical information regarding Alzheimer’s, creating a great combination for teens who would like a deeper, more scientific understanding of dementia. [Buy on Amazon]

Creative Commons photo by Jason Lander.

Q&As Roundups

Community Roundup: What’s The One Thing People Should Know About Chronic Illness?

We asked Folks' social media followers what the one thing they need others to understand about their experience. Here's what they told us.

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It’s hard to understand the experience of chronic illness if you’re not chronically ill yourself. So when the topic comes up in conversations, even well-meaning people can end up being insensitive at best, and offensive at worst.

That’s why, for this week’s Community Round-Up, we asked Folks’ social media followers: What’s the one thing you want others to understand about living with a chronic condition?

Amy Nicewicz

Amy Nicewicz:

I want you to know that every day is a battle. I may pretend that I am alright when I am not because I do not want to burden you. I need you to be there for me because some days I don’t know how much more I can fight. I want to be around you but some days I do not feel well and need to rest. The appointments with doctors and specialists never end. Life is not easy. Fighting illness can feel lonely. I need your understanding and your time. I need you to stay by my side and never leave me behind.

Amy is a sophomore in college studying Wellness and Alternative Medicine. She loves animals, music, and the outdoors. She can be found on Twitter at @SmileFighter1. 

Rhiann Johns:

Rhiann Johns

I suppose if I could choose one thing that I wish people could understand about living with a chronic condition is that appearances can be deceptive; you can’t judge a book by it’s cover.

I can have a smile on my face but still be overwhelmed by numerous symptoms. Very often, a smile is a mask that I wear to let others know that I am OK when in reality I am feeling anything other than fine. I can be bothered by pain, fatigue, dizziness and weakness throughout my lower limbs but still the mask I wear stays on, hiding the physical and emotional effects that my body has on me. It’s a smile that conceals so much.

On my face I can wear make-up and look carefree, healthy and ‘normal.’ The truth is that it conceals the very dark circles beneath my eyes from the extreme exhaustion after endless nights battling insomnia caused by intense pain in my legs. A light foundation and blush that gives me a healthy, natural glow that hides my true pale, and sickly looking complexion. I wish that people would not judge based solely on what is in front of them. To dig deeper and see our true selves: the truth that we often try so hard to hide but is there if others look hard enough.
Rhiann is a Psychology graduate who was only recently diagnosed with Functional Neurological Disorder (with a host of other issues!) and who shares her experiences with living with a neurological condition at My Brain Lesion and Me. She can be reached at Twitter at @serenebutterfly.  

Jed Finley:

Jed Finley

Our conditions are chronic, meaning life long and incurable. We understand people mean well and want to help, but to those who want to share with us diet, exercise, herbal, and other lifestyle treatments, believe us when we say: we’ve probably considered and/or tried it. Yoga is great for you, but for me it hurts. I have so many dietary issues it would make your head spin. Suggesting your latest diet fad might not take into account what I can and cant have. Fish is supposed to be amazing for me! I’m allergic to fish. You want to know the best way to help us? Stop suggesting and start asking. Take time to learn more about your chronic illness friends before you start throwing out get well quick schemes. We love your time and support. That’s what will help us the most.

Jed Finley is a Special Education teacher in his mid 30’s who was diagnosed with Ankylosing Spondylitis at 12 and created the Facebook-based support group Living With Ankylosing Spondylitis. He can be found on Twitter at @JediMaster941. 

Sonya Huber:

Sonya Huber

The one thing I wish people knew about living with a chronic condition is that invisible really does mean invisible. Many people have an irrational impression that they can “tell” who looks sick and who looks well, or that a disability should be visible on the body. The constant surprise I face–and the “but you don’t look sick” comments–are meant to encourage, but after day after day of hearing them I get the impression that my daily experience is not believed by people who mean to be supportive. Being complimented for passing as non-disabled ends up being such a sad experience for me, because it implies that disability is a category I should be happy to avoid.

Sonya Huber is the author of five books, most recently Pain Woman Takes Your Keys and Other Essays from a Nervous System. She can be found on Twitter at @sonyahuber.

Eric N. Valor:

Erin N. Valor

The reality of living with a chronic condition is that it can be extremely isolating. Whether it be pain, skin conditions, neurological issues, etc., people with chronic conditions often cannot engage in social engagements and/or may be quite volatile in mood due to their condition. It’s not that they are hostile or anti-social. Chronic conditions are extremely frustrating. Patience from others is necessary and appreciated.

Eric N. Valor is an IT professional turned self-taught neurology researcher focused on ALS (Amyotrophic Lateral Sclerosis or Lou Gehrig’s Disease). He can be found on Twitter at @surfiving.

 

Claudia Merandi:

Claudia Merandi

My reality is: I have a chronic illness, not a curse. There’s strong medications and pain associated with my Illness. It’s a burden on friendships, on intimacy, on work, but it’s my reality of living with a chronic illness. How you cope is how you get through living with a chronic illness. We all cope differently. Finding your coping mechanism is key.

Claudia Merandi is the author of Chron’s: The Other “C” Word. She is also a patient advocate/activist, author, and Crohn’s Warrior. She can be found on Twitter at @CMerandi.


Want to be part of the Folks community? Follow us on Twitter (@folksstories), Instagram (@folksstories), or Facebook and join the conversation.

Creative Commons photo by tamckile

Q&As Roundups

Community Roundup: How Do You Learn To Advocate For Yourself?

Advocating for yourself when you have a disability or health condition is a constant challenge. Here's some advice on how to do it effectively.

A new illness or health condition can have many life-changing complications, some visible and others less so. Yet the things most people see, like managing medication or learning to physically adapt to new limitations, can obscure an equally critical work: learning to advocate for yourself on a daily basis, about things both big and small. That’s why, for this week’s Community Round-Up, we asked Folks’ followers on : What does it look like to advocate for yourself on a daily basis? How did you learn to do this?

Farrah Kaeser:

Farrah Kaeser

It means being brave and speaking up when I need something, be it accommodation, respect, access, equality, or what have you. Sometimes that looks like reminding folks not to park in disabled spaces, asking for the seat on the subway, putting my foot down about legal issues, or inquiring about accessibility before attending a function. These seem really simple, but often people don’t even think about it until someone asks. I also take the opportunity to write really openly about my struggles with disability and accessibility, which I hope helps others understand the need more deeply.

As far as how I learned to do this, I guess that’s two-fold. Part of it was absolute necessity. The part is I spent a lot of time connecting with other advocates, watching and learning from them, then utilizing the tools I already had to create my own authentic brand of personal advocacy.

Farrah can be found at Twitter at @FarrahGarland and Facebook at @FarrahGarland. She blogs at www.workshark.me

Jed Finley:

Jed Finley

To be an advocate for yourself and your disease you need to be educated in your condition, treatments, and being concise. Personally, I don’t think being an outright expert in your condition and everything involved should be necessary, if we always had a willing audience. The problem is chronic illness patients and advocates face people who believe in easy fixes, misinformation, and/or just don’t listen. I have learned in my time of being open about my illness that the magic word to make people stop listing is Ankylosing Spondylitis. Most people hear a nasty word like that and they instantly check out. This provides us a very short period of time to make our case or educate. Therefore, we need to almost write a script of how to get the most easy to understand information out in a short period of time. Unfortunately, most people have no interest in learning about chronic illness. This is why we need to get our stories out to make words like Ankylosing Spondylitis, EDS, CRPS, UC, Lupus, and Crohn’s household names. We, the advocates, are on the advance team to lay out the information to make the world a little easier for chronic illness patients of the future. I learned from other AS advocates like Dawn Gibson and Charis Hill that advocacy was an option. That there was a need to educate the people around us and we had the right to do so. Like I said, we are the experts in our field, we are the ones who live our pain every day.

Jed Finley is a Special Education teacher in his mid 30’s who was diagnosed with Ankylosing Spondylitis at 12 and created the Facebook-based support group Living With Ankylosing Spondylitis. He can be found on Twitter at @JediMaster941. 

Amy Nicewicz

Amy Nicewicz:

Advocating for myself can mean a variety of things. Sometimes I need to take time off from plans and focus on my health. Other times I need to go outside and spend some time with nature to boost my mood. When I am around other people I need to express how I am feeling. Some days I am not able to participate in a given activity, and other days it is important for me to be a part of something. My needs will not always be fully met but I try to communicate with people about what can be done so I can be successful. I learn through my experiences over time and discover how to tackle each scenario. Advocating for yourself or someone else can be a difficult process, but you have to stick with it and be the little engine that could. Don’t be afraid to reach out and have someone help you through it.

Amy is a sophomore in college studying Wellness and Alternative Medicine. She loves animals, music, and the outdoors. She can be found on Twitter at @SmileFighter1. 

Rhiann Johns:

Rhiann Johns

This is a difficult question to be able to answer.  Like most people living with chronic illness, my life with a neurological condition is entirely unpredictable.  No two days are like, and my ability to do tasks can change in the blink of an eye.  Making plans or advocating for myself in advance can, therefore, be incredibly difficult as my health can change so dramatically, or swing back and forward like a pendulum.  People find it difficult to understand how we can be fine one minute and be in incredible pain or within the grasp of other symptoms.

But I am lucky, I have two incredibly supportive parents, who although may not fully understand, they do their best to, and I do not have to worry about not being believed as they always do.  Often I don’t have to say how I am feeling or what kind of day I’m experiencing, they know just by looking at me, and they kindly don’t expect me to complete chores or do anything physical. I advocate for myself every day by listening to my body and my symptoms.  They can often tell me what kind of day it will be, and what my limits are going to be.  And how did I learn this?  Through a lot of experience and by making a lot of wrong turns!
Rhiann is a Psychology graduate who was only recently diagnosed with Functional Neurological Disorder (with a host of other issues!) and who shares her experiences with living with a neurological condition at My Brain Lesion and Me. She can be reached at Twitter at @serenebutterfly.  

Amber Blackburn:

Amber Blackburn

Advocacy on a day to day basis always looks different. Some days it looks like standing up to a provider or insurance company demanding the care I need! Other days it could be posting blogs that teach others how to be a self-advocate or posting awareness posts on social media to spread the word about what my illness looks like.  It could even be working with the Chronic Disease Coalition on issues that could help myself and other chronically ill patients. No matter what I am doing it always feels good to know that I advocated for myself or others at the end of the day! Sadly, this is not something I was taught, it is something I have had to learn on my own or from others. Thankfully, I was taught about advocating for patients in nursing school, so in the end it gave me experience to advocate for myself.

Amber Blackburn is 32 years old and was diagnosed with lupus six years ago. She has been blogging and acting as an advocate for a year and a half. She can be found on Twitter at @LupieWarrior511.

Claudia Merandi:

Claudia Merandi

I learned how to be a patient advocate by watching my mom advocate for me. There always seemed to be a problem receiving pain management when I was in the hospital. And I watched my mom fight for me and that’s how I learned.

When I advocate for patients, I listen, I take notes, I ask questions, and I approach each situation differently.

Claudia Merandi is the author of Chron’s: The Other “C” Word. She is also a patient advocate/activist, author, and Crohn’s Warrior. She can be found on Twitter at @CMerandi.


Want to participate in the Folks community? Follow us on Twitter @FolksStories and contribute to the conversation!

Q&As Roundups

Community Roundup: How Do You Talk To Your Friends And Family About Your Condition?

You're past the diagnosis. Now what do you tell your loved ones?

In the days following a diagnosis, some turn naturally to their friends and families for support, but for others, it’s more complicated. Even if they mean well, loved ones might not know how to accept your new reality, or support you. Even if they do, though, opening up to the people you know most can be a fraught and vulnerable experience, filled with doubt. That’s why, for this week’s Community Round-Up, we asked Folks’ followers: How do you talk to your friends and family about your condition?

Claudia Merandi:

Claudia Merandi

When I finally broke my silence about my illness, I broke it big time and I wrote a book. Friends and family felt as though I had been living a secret life for 30 years. Because depression comes with my illness, I was embarrassed to talk with people about it. I was raised to be strong and being depressed meant being weak. At 50 years of age, I know that not to be true. Crohn’s Disease has a stigma attached and it’s not a pretty one. If I could give chronically ill people advice, it would be to educate your friends and family about your illness, especially your spouse. When you break your illness down in different pieces for people, they are more apt to understand and accept it.

Claudia Merandi is the author of Chron’s: The Other “C” Word. She is also a patient advocate/activist, author, and Crohn’s Warrior. She can be found on Twitter at @CMerandi.

Amy Nicewicz

Amy Nicewicz:

Talking to people about my illness is not always easy. I worry I will be left behind, unwanted, or misunderstood. I find myself living in fear which hinders my mental health. When the time is right and I have built trust with an individual I will eventually open up. After I share my struggles I usually feel a weight of burden lifted because I have nothing to hide and can be myself. If the person is accepting, I offer to answer any questions they have and spread awareness. My illnesses are a part of my life but I work to overcome them so I do not want them to be the center of attention all the time.

Amy is a sophomore in college studying Wellness and Alternative Medicine. She loves animals, music, and the outdoors. She can be found on Twitter at @SmileFighter1. 

Sonya Huber:

Sonya Huber

Because my pain makes me really irritable sometimes, I try to notice as soon as I’m feeling pain so that my mood isn’t perceived as angry and/or my family members don’t take it personally. In general with family and friends I am trying to be more vocal about the effects of the disease so that they know it’s always with me and always on my mind. I often find that I have to tell friends that having my cane isn’t necessarily a “bad” day and that walking without my cane isn’t necessarily a “great” day.
Sonya Huber is the author of five books, most recently Pain Woman Takes Your Keys and Other Essays from a Nervous System. She can be found on Twitter at @sonyahuber.

Eric N. Valor:

Erin N. Valor

I tend to be clinical in such matters. So I explained what ALS is, what the prognosis is, and what I planned to try to do about it. My family already had an idea what ALS is and were quite unhappy with the news. My friends had no idea but were equally unhappy. I find with such news that you can only be matter of fact with it.

Eric N. Valor is an IT professional turned self-taught neurology researcher focused on ALS (Amyotrophic Lateral Sclerosis or Lou Gehrig’s Disease). He can be found on Twitter at @surfiving.

 

 

Saidee Wynn:

Saidee Wynn

The way I talk about them depends greatly on who I’m talking to. When talking to someone about my illnesses for the very first time, I’m sure I resemble a hummingbird as I flit from issue to issue and symptom to symptom, attempting to explain how all the pieces connect. I attempt to educate while spreading awareness.

With close friends and family, I talk about it like an annoying younger sibling that follows me wherever I go, causing trouble all the way. I might whine, exclaiming “my freaking EDS is kicking my butt again,” or something more explicit, but the focus always tends to be on what I’m feeling and experiencing in the moment. It’s a big part of my life that is constantly in flux, so it’s gonna get talked about a lot.

Saidee Wynn writes about life with chronic illnesses and disabilities. She can be found on Twitter at @spwarriortweets.

 

Rhiann Johns:

Rhiann Johns

When living with a rare condition it can be really difficult to adequately explain to friends, family or even passing acquaintances the exact nature of your condition.  If it’s not something they’ve heard of, it can just lead to more and more questions so I usually describe it in as little detail as possible! Of course when asked how I am then I truthfully tell them the kind of day I’m having due to my symptoms but very often the grimace on my face, the way I hold myself and my mood tells them all they need to know. Besides, I would much rather have a discussion on the latest book I’m reading or one of the many television programmes I’m loving as frankly I think there are much more interesting things to talk about regarding my life than my illness, especially as it gets way too much attention already!

Rhiann is a Psychology graduate who was only recently diagnosed with Functional Neurological Disorder (with a host of other issues!) and who shares her experiences with living with a neurological condition at My Brain Lesion and Me. She can be reached at Twitter at @serenebutterfly.  

 

Farrah Kaeser:

Farrah Kaeser

I think it may just be me – my personality and education – but I find that being very direct, honest, and somewhat clinical works best for me. I don’t owe anyone an explanation about my health, but for those I care about, I want them to understand the mechanism behind my struggles, not just that I feel crummy all the time. So I usually use a balance of technical descriptors like “orthostatic intolerance”and “sacroiliac subluxation” and cute explanations like “my all-of-me hurts!” It makes my struggle clear and legitimate, but also keeps the overwhelmingly awfulness of it from being too oppressive. It seems to have been an effective strategy for me thus far.

Farrah can be found at Twitter at @FarrahGarland and Facebook at @FarrahGarland. She blogs at www.workshark.me

 

Amber Blackburn:

Amber Blackburn

Talking to friends and family about my illness has been hard at times, and has been a learning experience for me. In the beginning I opened up too much I believe. I wasn’t really sure what living with a chronic illness looked like because it was all new to me, so I shared just about everything. By doing that it seems I scared off some people who I thought were life long friends, and they chose to walk away. Because they couldn’t deal with the things that were going on in my life. After that happened I became very closed off and didn’t share much about my health with anyone. Which wasn’t the right way to deal with it either because by not sharing some felt that I wasn’t being truthful. So over the years I have come to the realization that every person in my life is going to need something different. Some people want to know everything that is going on and others don’t need to know unless something big happens. So honestly, it depends on who I am talking to in regards to what I share.

Amber Blackburn is 32 years old and was diagnosed with lupus six years ago. She has been blogging and acting as an advocate for a year and a half. She can be found on Twitter at @LupieWarrior511.

Do you have thoughts on this issue? Follow us on Twitter @FolksStories and tweet us to add to the conversation.

Q&As Roundups

Community Roundup: What Advice Would You Give The Recently Diagnosed?

If you had just one piece of advice to give at the beginning of a friend's journey post-diagnosis, what would it be?

Most conversations about health revolve around getting better as quickly as possible. We push forward through illness with the expectation of improvement. Yet for those with chronic conditions, there’s a different calculus required. The question becomes how to live well with an illness when there’s no recovery date in sight.

That’s why, for this week’s Community Round-Up, we asked Folks’ followers: What advice would you give someone recently diagnosed with a chronic condition?

Jed Finley:

Jed Finley

Do as much research as possible. You need to be the expert of your condition. Doctors are educated but unless they are a specialist in your condition, they are also working with patients with several other conditions. You theoretically need to get your Masters and your Doctorate in your condition. That said, don’t hyper focus on every symptom. For me, Ankylosing Spondylitis has an unending list of possible symptoms. Many of them, I don’t have. Be aware of them, but don’t obsess.

Be aware of your body. Keep a symptoms diary to keep track of how you feel. When I go into the doctor I want to be able to tell her exactly how I’ve felt and what I did that might have lead to that pain of lack there of. Make the most of your time. Most doctors only spend five minutes actually looking at you. Make sure all your concerns are heard, and if you aren’t satisfied, don’t let the doctor leave. He or she is working for you! Simply put, be an active patient!

Jed Finley is a Special Education teacher in his mid 30’s who was diagnosed with Ankylosing Spondylitis at 12 and created the Facebook-based support group Living With Ankylosing Spondylitis. He can be found on Twitter at @JediMaster941. 

Claudia Merandi:

Claudia Merandi

I was six years old when I experienced my first flare with Crohn’s Disease. As I would get older, the flares became intense. Sometimes the pain was so severe that it would take my breath away, my mouth would get dry, and I would rock back and forth until the pain would pass. This became the norm in my life. I was accustomed to pain. When my second daughter was born, my world stopped at home but it continued in a hospital bed for the next ten years. I no longer identified as being a successful court reporter, mother, and a  daughter, I only identified as being a person with a chronic illness. I remember closing off the world and living only as a sick person.

Eventually, I would rewire my brain and I became a chronically ill person living in a healthy person’s world and I learned to acclimate.  I started delivering Meals on Wheels, and then I, eventually, began to advocate for elderly. It’s imperative, as a person living with a chronic illness, to remember that their illness is a part of life but there’s many other pieces. My illness does not define the person that I am today. My illness aided in the person that I am today. Sadly, there’s no manual that comes with being a chronically ill person because it’s a lifetime challenge. It’s the club that nobody is knocking on the door to get into. But once you’re in the club, you need to learn the rules of the club. On the days that you’re sick, rest. On the days that you’re healthy, you need to embrace those days. Remember your passion, remember what makes you smile.

Claudia Merandi is the author of Chron’s: The Other “C” Word. She is also a patient advocate/activist, author, and Crohn’s Warrior. She can be found on Twitter at @CMerandi.

Forester McClatchey:

Forrester McClatchey is a regular Folks contributor on diabetes. Our favorite luddite, rejecting social media of all kinds.

My first item of advice to someone recently diagnosed with a chronic condition would be to find a community of fellow sufferers. Immediately. However you choose to cope with the news—self-pity, stoicism, defiance—all that can wait until you plug yourself in to a community, which can take many forms (forums, fundraising events, summer camps). There’s no substitute for speaking with people who understand what’s happening to your body and your emotional life. It organizes your experience, allays confusion/fear, and gives you a support network. So that’s my advice: find a community right away.

Having worked as a cartoonist and a factory hand, Forester McClatchey is currently an MFA Candidate in Poetry at the University of Florida.

Amber Blackburn:

Amber Blackburn

If I could give advice to someone who had recently been diagnosed with a chronic condition, I would pass along three thoughts. First, I would express the importance of a good support system. Whether that be from family or an online support group, we all need to have people to talk to who truly understand what we are dealing with.  Secondly, I would pass along that it is perfectly okay to ask for a second opinion or for a change of doctors. If you don’t feel that you are getting the care you need then by all means please ask for another option! Our health is of the utmost importance therefore we deserve only the best care. Lastly, I would stress the importance of advocacy. Not just for the condition as a whole but for yourself.  No one will ever hold your care and health to the level that we do for ourselves.

Amber Blackburn is 32 years old and was diagnosed with lupus six years ago. She has been blogging and acting as an advocate for a year and a half. She can be found on Twitter at @LupieWarrior511.

Eric N. Valor:

Erin N. Valor

I would say two words: “be prepared.” For Person(s) with ALS (PALS) such as I am, it’s crucial you stay ahead of the disease by making required adjustments to your home, obtaining necessary equipment (crutches, powered wheelchairs, a wheelchair-accessible van, etc.), and other preparations BEFORE you need them. With an average survival of 2-5 years, PALS don’t have time to wait. Unlike Mick Jagger, time is not on our side.

Eric N. Valor is an IT professional turned self-taught neurology researcher focused on ALS (Amyotrophic Lateral Sclerosis or Lou Gehrig’s Disease). He can be found on Twitter at @surfiving.

Rhiann Johns:

Rhiann Johns

There are so many things that I wish someone would have told me after being diagnosed with a neurological condition; or even during the many years when searching for an explanation to the symptoms I was experiencing. In my experience, even after gaining a diagnosis, and particularly one which is not well known I still felt incredibly alone and isolated.  So, I would advise others to seek support, whether this involves a face-to-face support group or even by finding others with the same condition online. Find your tribe, and I promise you, you will never feel alone again.

But, even when you’ve found your tribe, remember that not everyone’s experience with a neurological condition is going to be the same. These conditions are complex, and no two people experience the same set of symptoms.  So don’t compare your experiences with others in your situation – it will only drive you crazy and often will make you terrified of what your future may entail.  And don’t let other people draw comparisons for you, as they almost always have bad endings or suggest unproven treatments to try!  Work out a treatment plan that works for you, and your symptoms with your healthcare team. There will be dark days, and so I suggest to develop a sense of humour, even a dark humour – you have a fall in the street?  So, what?  Laugh it off, get back up and carry on!  Laughter helps you get through the day, especially those not too good days and makes the uncertainty a little bit more bearable.


After being diagnosed, there are certainly many more hospital appointments in the future.  So, when visiting your neurologist or other healthcare professional involved with your care, prepare!  Write a series of questions you have or concerns that have cropped since you last saw them in advance.  Also, keeping a personal health journal is something I would recommend, so you don’t forget to mention certain symptoms or other issues that you’ve encountered.  As don’t forget, you are the best reporter of your symptoms and your experience with this condition!

Rhiann is a Psychology graduate who was only recently diagnosed with Functional Neurological Disorder (with a host of other issues!) and who shares her experiences with living with a neurological condition at My Brain Lesion and Me. She can be reached at Twitter at @serenebutterfly.  

Amy Nicewicz

Amy Nicewicz:

If you are newly diagnosed with a chronic condition I want you to know how important it is to establish a support network. When you are having a rough day you should not need to be afraid to reach out. Fighting alone will not work. You need a stable team by your side to help you get back up when you want to give up. You have to be your own advocate sometimes. Let others know what you need in order to succeed. Communication is the key. Not everyone understands what you are going through. It can be beneficial to talk to others battling the same condition. This helps you realize you are not alone and can provide another perspective. Try your best not to let your condition stop you from doing what you love. Let your illness empower you. Fight back!

Amy is a sophomore in college studying Wellness and Alternative Medicine. She loves animals, music, and the outdoors. She can be found on Twitter at @SmileFighter1. 

Do you have thoughts on this issue? Follow us on Twitter @FolksStories and tweet us to add to the conversation.

Q&As Roundups

Community Roundup: How Often Do You Think About A Cure?

When you have a condition, the prospect of a cure can inspire hope, but that hope can also sometimes get in the way of recovery. So how should you think about it?

For people living with chronic conditions, the prospect of a cure can both inspire and dishearten. After diagnosis, some organize their lives around a search for healing. Others focus on living well with their condition, refusing to be defined by sickness and cautious lest the hope for a cure distract them from the life they have.

That’s why, for this week’s Community Round-Up, we asked Folks’ followers: How often do you think about a cure? To what extent does it shape your daily reality? Some responses have been edited for clarity.

Sonya Huber:

Sonya Huber

I do sometimes think about a cure, mostly when I hear about people with rheumatoid arthritis who went into remission. I allow myself to imagine what it might be like to be fully mobile and pain-free again, but then I have to put that out of my mind. Because this is my life, this is my body, and I go forward into each day with joy only if I love and care for the skin I’m in.

Sonya Huber is the author of five books, most recently Pain Woman Takes Your Keys and Other Essays from a Nervous System. She can be found on Twitter at @sonyahuber.

Claudia Merandi:

Claudia Merandi

I never thought about my illness, Crohn’s, having a cure. I’ve only known what it is to be “sick.” But I live as a “healthy sick person.”  I never considered myself to be “that” sick. I only knew a hospital bed for 20 years and I still didn’t think I was sick. Maybe that’s why I’m still fighting. If there was a cure, I wouldn’t be who I am today and I love the person I am today. I am Crohn’s. Crohn’s isn’t me. I am everything before I am a person with Crohn’s.

Claudia Merandi is the author of Chron’s: The Other “C” Word. She is also a patient advocate/activist, author, and Crohn’s Warrior. She can be found on Twitter at @CMerandi.

Jed Findley:

Jed Findley

A cure? Preposterous! I never think about a cure. I am solid in the fact that Ankylosing Spondylitis is incurable. They barely have a genuine treatment right now. I think we are far far away from a cure. Thinking about what may be causes a lot of grief. Like dreaming of living comfortably in a huge house when you are barely making a living. A cure is a fairy tale and getting ones hopes up for Prince Charming is only going to lead to a huge letdown. I don’t need this kind of depression in my life. So, I don’t even dream of a cure.

Jed Finley is a Special Education teacher in his mid 30’s who was diagnosed with Ankylosing Spondylitis at 12 and created the Facebook-based support group Living With Ankylosing Spondylitis. He can be found on Twitter at @JediMaster941.

Saidee Wynn:

Saidee Wynn

Honestly, I don’t think about a cure that often. It will occasionally burst into the forefront of my mind, but I try to push it right back out. There may never be a cure for my illnesses in my lifetime. If I were to hold onto the belief that a cure is coming, I feel I would end up putting my life on hold.

Saidee Wynn writes about life with chronic illnesses and disabilities. She can be found on Twitter at @spwarriortweets.

Eric Valor: 

Eric Valor

Pretty much every day. I think about it in terms of my own research for a cure and about what I will do to get my life back when cured sufficiently to regain my movement. It’s my single most motivating thought.

Eric N. Valor is an IT professional turned self-taught neurology researcher focused on ALS (Amyotrophic Lateral Sclerosis or Lou Gehrig’s Disease). He can be found on Twitter at @surfiving.

Farrah Kaeser:

Farrah Kaeser

On a personal level I have resigned myself to the fact that there is no cure for the conditions I have (Fibromyalgia, Ehlers Danlos, and more), and that there probably won’t be in my lifetime. In fact, doctors and scientists don’t even fully understand (and some “don’t believe in”) my conditions, so the idea of a cure seems unrealistic. Dwelling on it really doesn’t help me any, as it doesn’t change anything or move me forward in life, rather it exacerbates my depression and brings me down.

But on a professional level, it’s a different story. When I got my first diagnosis (fibromyalgia), the fact that my doctors so nonchalantly told me they didn’t even understand the mechanism behind my pain, that it would just get worse and worse, and there was no cure, good luck, flabbergasted me. So much so that I have spent the last 9 years in school for Natural Medicine. I now am completing my doctorate, in hopes of finding a better understanding of what’s happening on a neurological and cellular level in the body,  as well as possibly developing either natural or integrative options to help manage symptoms. I work every day for a cure for my conditions and others, but am aware that while my work is important and will hopefully be beneficial, likely we will not see notable results in my lifetime.

So, in conclusion, the answer is two-fold. It is both an ever-present dream and goal, but one that I do not place any hope in for myself. I hope I am surprised by a development that can benefit me. That would be life changing! But for me personally, clinging to an unlikely dream does more harm than good. But working towards making things better… that’s the key.

Farrah can be found at Twitter at @FarrahGarland and Facebook at @FarrahGarland. She blogs at www.workshark.me

Forester McClatchey:

Forrester McClatchey is a regular Folks contributor on diabetes. Our favorite luddite, rejecting social media of all kinds.

I don’t think about a cure very often. Partly this is because my illness (Type 1 Diabetes) has become so manageable that it’s rarely a source of great suffering. Partly it’s because I don’t want to get my hopes up. Now that I think about it, I realize that I actively avoid thinking about a cure. Here’s why. With T1D, discipline is essential to self-care. Your body is a daily science experiment, and that means you have to be a good scientist (rigorous, detached, thorough, empirical). The promise of a cure, however distant, would erode those virtues—especially the discipline—by making them seem less necessary. So I approach cure-talk with a lot of caution and skepticism. I dream about a cure, but I try not to feel entitled to getting one.

Having worked as a cartoonist and a factory hand, Forester McClatchey is currently an MFA Candidate in Poetry at the University of Florida.

Amy Nicewicz:

Amy Nicewicz

Living with Crohn’s disease has been one of the biggest battles I have ever faced. With a cure, my entire life would be different. I am used to the pain, sadness, worries, and what feels like loneliness. Every six weeks I arrive at the hospital for my treatment. I stay for a couple hours and wander the halls rolling my IV stand by my side. On the days I lose hope for a cure, I remind myself how I must live life as much as possible right now. I imagine my twelve-year-old self, lying in a hospital bed for an entire week. I was thin, frail, confused, and standing on the cliff of death. These experiences shaped me into who I am today. I aim to live in the moment more. I never forget to remind those I love how much they mean to me. Not knowing when and if a cure will come is how I power through the day. People who share the same chronic illness create their own empowering community together.

Amy is a sophomore in college studying Wellness and Alternative Medicine. She loves animals, music, and the outdoors. She can be found on Twitter at @SmileFighter1.

Rhiann Johns:

I only really think of a cure when I am in a dark place, or when the frustrations and reality of living with a neurological condition become evident. For example, the times when I run out of ingredients while cooking.  It is times like this when I consider the reality of how these symptoms affect my life and wish I was ‘normal’ so that I could simply shop by myself instead of being so dependent on others just to get out of the house or to go shopping for me. However, in my opinion, it is not particularly productive to allow thoughts of a cure to influence or shape your daily life.  For me, doing so would only set up myself for endless disappointment and would leave me with more negative feelings and resentment toward my neurological condition.

That is why I instead to focus on the present.  By doing so, I can live the best life possible despite the neurological condition I live with and the symptoms that can cause many disruptions in my life. A promise of a cure comes with many different words such as ‘possible,’ ‘chance’ or ‘might.’  Words which are only mere possibilities and no real definites.  I prefer definites, and so I prefer the present rather than to dwell on the future and what it may or may not bring.

I will sign off with one of my favorite quotes: “Yesterday’s history, tomorrow is a mystery, today is gift, which is why we call it the present.”

Rhiann is a Psychology graduate who was only recently diagnosed with Functional Neurological Disorder (with a host of other issues!) and who shares her experiences with living with a neurological condition at My Brain Lesion and Me. She can be reached at Twitter at @serenebutterfly.  

 

Do you have thoughts on this issue? Follow us on Twitter @FolksStories and tweet us to add to the conversation.

Q&As Roundups

Community Roundup: Why Should We Tell Our Stories?

Every person has a story worth telling, but all too often, those with conditions are shamed into silence. Here's what that needs to change.

When you are disabled or chronically ill, you are often denied control of your own narrative. Popular culture can treat you as invisible, except as a rote “inspiration” or–worse–something to be gawked at. Too often, then, any voice that disrupts the “status quo” or diverts from what is “conventional” is lost or even actively suppressed.

That’s why, for this week’s Community Round-Up, we asked Folks’ followers: Why is it so important for people with chronic illnesses or disabilities of any kind to tell their story? What’s lost when they don’t or when their voices are mediated or filtered?

Sonya Huber:

Sonya Huberr

Our experiences are so often medicalized, judged, and evaluated, but disabled and chronic illness people have lives as complex as any other humans. What gets lost when we don’t speak for ourselves is the beauty, dignity, humor, and urgency of our daily lives. We are the experts in living our lives and navigating our challenges.

Sonya Huber is the author of five books, most recently Pain Woman Takes Your Keys and Other Essays from a Nervous System. She can be found on Twitter at @sonyahuber.

Jed Finley:

Jed Finley

Education is the reason why sharing our stories is so important. When it comes to chronic illness and disability, we are the best teachers. Not doctors, not “experts,” not talking heads, or any kind of healthcare provider (unless they are chronically ill or disabled). We are the ones who live with our illness every single day. We know what works, or doesn’t work. We know what elevates our pain and have a better idea of how to treat it, even if we don’t fully understand it. The reason why so-called experts have the ability to speak for us is because many of us choose to suffer in silence. We can’t be silent. We need to be willing to speak and tell our stories for the benefit of ourselves and our Spoonie siblings.

Jed Finley is a Special Education teacher in his mid 30’s who was diagnosed with Ankylosing Spondylitis at 12 and created the Facebook-based support group Living With Ankylosing Spondylitis. He can be found on Twitter at @JediMaster941.

Saidee Wynn:

@spwarriortweets www.spooniewarrior.com

When things stay hidden, they are easily forgotten. “Out of sight, out of mind,” right? By sharing our stories, we’re demanding to be noticed. We’re refusing to be hidden, pushed aside, or forgotten. And we’re demanding that our needs be met while normalizing our normalizing our existence. We aren’t shameful secrets. We’re human beings and we deserve to be seen and heard in all spheres.

Saidee Wynn writes about life with chronic illnesses and disabilities. She can be found on Twitter at @spwarriortweets.

Forester McClatchey:

Forrester McClatchey a regular Folks contributor on diabetes. Our favorite luddite, rejecting social media of all kinds.

Is it “important” for such people to tell their stories? Perhaps. Probably. These stories wipe away what Virginia Woolf called “the cautious respectability of health,” and remind us that we are fundamentally alone with our bodies. Polite society prefers to ignore that relationship, and sick/disabled people are uniquely suited to break the silence. Having the temerity to do so educates the healthy and makes sick/disabled people feel slightly less alone.

Having worked as a cartoonist and a factory hand, Forester McClatchey is currently an MFA Candidate in Poetry at the University of Florida.

Amber Blackburn:

Amber Blackburn

People who live with a chronic illness must share their story. We can’t expect others to understand what we go through on a daily basis if we never tell than. We can’t expect things to change if we keep our stories hidden. Change will never happen if we don’t open up and share our daily struggles.

Amber Blackburn is 32 years old and was diagnosed with lupus six years ago. She has been blogging and acting as an advocate for a year and a half. She can be found on Twitter at @LupieWarrior511.

Corinne Meirowitz:

Corinne Meirowitz

I have a friend who works in the patient advocate community. He likes to say that he thinks of himself as temporarily able bodied. I think this is brilliant, because the truth is at some point in everyone’s lives, a part, or multiple parts of their body will stop functioning at their best. So whether you are currently ill or not, every single person can benefit from the stories and life experiences of those who are chronically ill and / or disabled. Telling our stories also serves as vital connection and lifeline to others when so often there are feelings of isolation. Growing up I did not see bodies or lives like mine portrayed in the media. As an adult I now seek out stories of those who are ill and disabled and feel seen and understood when I read these different tales. My greatest wish is for the next generation of boys and girls to not have to hunt to find themselves represented and heard.

When our voices are mediated or filtered, what is often lost is the grey matter. No individual is just one thing. When you’re reduced to either a cautionary tale or an inspiration, that is so far from the entire story. Human beings live in the grey, messy, can’t tie it up in a cute little bow, middle. The middle is where it gets interesting…

Corinne Marie is a writer, speaker, and advocate living with a rare chronic illness. She can be found on Twitter at @rin.marie10.

Erin N. Valor:

Eric N. Valor

The loss is in the perspective from the patient’s point of view. When people don’t see a patient as having a valid issue and treat them as if they were mere children (unless they are, in which case caveats still apply), the human race loses valuable insight into the experience of living and coping with chronic disease. I have become very knowledgeable about my disease (Amyotrophic Lateral Sclerosis, ALS, or Lou Gehrig’s Disease) to the point where we can have long discussions about the latest in research into it. I have also become a resource for other patients around the world. Without my ability to communicate as I am doing right now I would not be able to do my own research and would not be able to relay that to other patients as I have been doing since my diagnosis 13 years ago.

Eric N. Valor has ALS and is a self-taught Information Technology professional turned self-taught neurology researcher focused on ALS (Amyotrophic Lateral Sclerosis or Lou Gehrig’s Disease). He continues to push the limits of patient-led advocacy and awareness, contributing to research into a treatment for ALS, and assisting other PALS with knowledge about and coping with the disease along with helping them with communications technology. He can be found on Twitter at @surfiving.

Effie:

Effie @risingabovera

By telling your story you can find like-minded people or your tribe so to speak. It’s healing to share your story because you will find someone out there has gone through the exact same thing as you. It’s a lot building connection, gaining relationships and support. Often times, depression, grief, loneliness can manifest with these conditions and it’s important that people reach out even if it’s to a family member, close friend, or a person you meet on the internet. Everyone opens up at their own pace so I don’t think anything is lost but when someone is mediated or filtered it can bring them person back into their shell. Nobody should feel oppressed or told that what they are saying needs to be changed. Everyone has a right to express how they feel. It’s of equal importance that with those with these health struggles really deal with the emotional aspect of the disease. Holding feelings, thoughts and ideas inside only makes the person feel worse. The only thing that would be considered lost if someone were to not tell their story is help. When we share with others we gain more wisdom, gain more clarity, and can find solutions to answers we were seeking. Lastly, without opening up to share their stories there would be a lack of understanding. There are still misconceptions and misunderstandings when it comes to chronic illness and disability, so keeping silent will only fuel this problem even more. When we make the effort to create change society limitations can slowly be lifted and we can all shift to a different level of understanding and eventually, empathy. Empathy is what is needed for people living with these health struggles and once we can shift people’s mindsets to this we will see less judgement and more open-minded conversations happening between healthy individuals and the chronically ill or disabled.

Effie has been living with juvenile rheumatoid arthritis for almost 15 years and is a patient and awareness advocate. She lives in Chicago, IL and can be found on Twitter at @risingabovera.

Q&As Roundups

Community Roundup: What Does It Mean To Be Vulnerable?

Allowing yourself permission to be vulnerable is important when facing chronic illness or disability. Here's some advice on how to do so.

Learning to be vulnerable is an important part of being human. It’s what you have to do to fall in love, to have a child, to grieve, and to accept yourself… especially in the face of chronic illness or disability.

That’s why, this week, we asked our community: what does it mean to be “vulnerable?” From learning to ask for help, to resisting the urge to feign stoicism, here’s some of the best insights on the true definition of vulnerability that we heard from our community.

Also, a reminder: for next week’s roundup, we’re asking our community about the fictional character from fiction (TV, film, literature, video games, or other) that has inspired them most in the face of disability or illness. So follow Folks on Twitter and tell us what you think!

Creative Commons image by Sandor Weisz