Roundups

6 Songs About Chronic Illness From Pop Stars With Health Conditions

Illness is the great leveler. Just ask Missy Elliott, Lady Gaga, Nick Jonas, Selena Gomez, Avril Lavigne, and TRACE, all of whom have written songs about the experience of being chronically ill.

When it comes to pop culture, the chronic illness experience isn’t always represented, but that might be about to change. Over the past few years, several high profile singer-songwriters and performers have revealed their own diagnoses with long-term conditions and disabilities, and they’ve begun to speak out on the topic, and even refer to it in their songs. Here, six musicians and the long-term conditions they live with.

Lyme Disease — “Head Above Water” by Avril Lavigne 

If you’ve ever wondered why Avril Lavigne took such a long break from the music industry, the answer is simple. The singer contracted Lyme disease which forced her to retreat from the spotlight, and question whether or not she’d ever sing again. Speaking to Billboard in October 2018, Lavigne explained, “I was in bed for f***ing two years. It went undiagnosed for so long that I was kind of f***ed.” She even shared that, prior to her diagnosis, multiple doctors had made her feel “crazy” by not believing her symptoms—which is something that many people, and women especially, can relate to.

2018’s comeback single—“Head Above Water”—is about the moment that Lavigne “accepted that I was dying… like I was underwater and drowning, and I was trying to come up to gasp for air” (via Billboard). Lyrics such as “My life is what I’m fighting for,” and “I’m underneath the undertow” will be instantly relatable to anyone who’s ever felt overwhelmed by a condition they didn’t ask for.

Fibromyalgia — “The Cure” by Lady Gaga

Back in September 2017, Lady Gaga was forced to cancel her European tour because of a fibromyalgia diagnosis. In a statement released at the time (via The Guardian), it was revealed that Gaga had made the difficult decision not to tour due to “severe physical pain that has impacted her ability to perform.” As anyone with fibromyalgia syndrome knows, the unpredictability of the condition means that patients can experience a variety of symptoms including extreme unexplained exhaustion, and severe muscle and body pain.

Released in April 2017, “The Cure” seemed to speak to the condition Lady Gaga had yet to reveal to her fans. Lyrics such as “If I can’t find the cure, I’ll fix you with my love,” and “If you say you’re okay, I’m gonna heal you anyway,” read like the comforting voice a chronically ill person might crave amid intense pain and discomfort out of their control. Gaga would return to the theme on the A Star Is Born soundtrack in 2018 with the track “Heal Me”.

Lupus — “Wolves” by Selena Gomez

Wild rumors suggested that Selena Gomez had absconded to rehab when, in fact, she was dealing with a lupus diagnosis she was yet to reveal to the world. Speaking to Billboard in October 2015, upon the release of her second solo album, the aptly-titled Revival, Gomez explained:” “I was diagnosed with lupus, and I’ve been through chemotherapy. That’s what my break was really about… I wanted so badly to say, ‘You guys have no idea.’”

In September 2017, Gomez revealed she’d also undergone a kidney transplant due to complications relating to the chronic illness. And she’s frank about the fact that living with a chronic illness has exacerbated her mental health. Speaking to Harper’s BAZAAR in February 2018, Gomez explained, “I’ve had a lot of issues with depression and anxiety… and it’s not something I feel I’ll ever overcome.”

Upon its release in November 2017, many fans speculated that Gomez’s collaboration with Marshmello—“Wolves”—was about lupus, and it’s easy to see why as Gomez sings, “I’ve been down the darkest alleys. Saw the dark side of the moon.”

Anxiety — “Anxiety” by TRACE

Up-and-coming singer TRACE isn’t afraid to delve into what living with anxiety is really like—conjuring it as the perpetual lurking demon it truly is. On her latest single she warns that the condition is, “Creeping through the doors, and under all my sheets. I can never sleep. It worries me.” (Which, same tbh). In the music video, the condition is literally personified, and TRACE is relentlessly stalked by two largely silent, horror movie characters.

Detailing her anxiety for L’Officiel, TRACE writes, “one minute you’re enjoying a snack in front of the TV, and the next you’re in the shower, bawling, thinking about death. Personally, Anxiety takes me away from the present and puts me in a harmful future. It makes me worry about things I cannot control or things I might not understand.”

Graves’ Disease — “I’m Better” by Missy Elliott

In 2008, Missy Elliott was diagnosed with Graves’ disease—an autoimmune disorder that affects a person’s thyroid—after exhibiting some pretty serious symptoms including a dramatic weight loss, per Billboard. The rapper explained, “It causes hair loss, your eyes bulge. My blood pressure was always up from just overworking,” having revealed her diagnosis in a statement to ABC News in 2011.

Speaking at Essence’s Black Women in Music event at the start of 2018, Elliott said of her condition, “I was sick and I couldn’t even lift a pen. My nervous system had broken all the way down.” But Elliott’s health has been improving and, as collaborator Lamb raps on 2017’s “I’m Better”, “It’s another day, another chance. I wake up, I wanna dance. So as long as I got my friends, I’m better, I’m better, I’m better.”

Diabetes — “A Little Bit Longer” by Nick Jonas

When he was 13 years old, Nick Jonas was diagnosed with type 1 diabetes, and went on to write the song “A Little Bit Longer” about finding out he had the condition. With lyrics like “Waiting on a cure, but none of them are sure,” Jonas grapples with the lifelong condition and his need to medicate and keep it under control.

In 2008, Diabetes Control explained that Jonas diagnosis followed a plethora of unexpected symptoms including “mood swings, extreme thirst, frequent bathroom breaks, and sudden weight loss.” And in 2015, Jonas told Healthline that he uses an insulin pump to monitor and control his condition, and said, “yes, it has affected me creatively in the sense of how it’s shaped who I am as a person, and given me perspective.”

If you’d like to listen to these songs on Spotify, here’s a playlist containing all of them. If you know other songs about chronic illness, feel free to add them!

Roundups

5 TV Shows That Get Disability Right

From Stranger Things to Keeping Up With The Kardashians, here's five shows that refuse to look at chronic illness and disability through an able-bodied lens.

When it comes to representations of disability and chronic illness in popular culture, it’s easy to be frustrated. Anyone that knows me will attest that I often lament the lack of realistic depictions of disability on TV, which is all too glaringly obvious when you spend the majority of your life propped up in bed with your laptop, like me. (I could probably get up: I just choose Netflix).

Any disabled or sick person will tell you that seeing an inaccurate depiction of the condition they’re toxically glued to for the rest of their life hurts. For instance, I found ballet show Flesh & Bone gripping until one of the dancers discovered she had MS, and her diagnosis was as hamfisted as a Joss Whedon rewrite.

But all is not lost. There are shows that are getting accurate representation right. These television shows refused to be lazy, and instead dared to get disability right… in some cases, even daring to cast disabled actors in disabled roles (Eddie Redmayne, take a seat).

If you want to support the change you’d like to see in television, here are five television shows that get disability right.

Breaking Bad

A man with cerebral palsy talks to a bald man in glasses in a living room with plaid curtains in the background.

RJ Mitte as Walt Junior in Breaking Bad.

RJ Mitte’s depiction of drug lord Walter White’s son remains one of the strongest examples of a disabled actor being cast in a role which doesn’t focus on his disability. That’s important, because the part could’ve so easily gone to an able-bodied, Mickey Mouse Club reject. Living with cerebral palsy in real life, Mitte’s character had the condition, but it didn’t have him. Walter White Jr. was never defined by his disability, and is basic proof that just as Shonda Rhimes employs colorblind casting on all of her shows, an actor’s physical or mental impairments shouldn’t limit their chance to audition for any part. Plus, Walter’s dad, as a person with cancer who’s undergoing aggressive therapies, is a literal disabled badass, and I invite you to fight me.

American Horror Story

Jamie Brewer, who has Down Syndrome, is one of the core cast members of American Horror Story.

Actor Sarah Paulson recently said of American Horror Story co-creator Ryan Murphy (via Variety): “His unfaltering commitment to telling the stories of women is noteworthy. This is a man who wants to tell the stories of women over 40.” And the same is true when it comes to casting disabled actors in unexpected roles. One such disabled actor is Jamie Brewer, a woman with Down Syndrome who’s played clairvoyant witches, cult members, and creepy dolls, and continues to recur on the series even now. Plus, Inside Edition recently called Brewer the “First Woman With Down Syndrome to Star in Off-Broadway Play,” and if that’s true, it’s no mean feat that the prolific performer is blazing a trail and hopefully, instigating a major change.

You’re the Worst

Gretchen Cutler of You’re The Worst struggled with depression.

Gretchen Cutler could’ve been a cookie cutter anti-rom-com heroine, breezing through her character arc on too much booze, sex, and witty repartee. Instead, when You’re the Worst returned for a second season, Gretchen revealed herself to have the sort of show-stopping depression that ends lives, and destroys relationships. For anyone familiar with clinical depression, breakout sitcom You’re the Worst became agonizing to watch because its representation was so damn close. When viewed next to fellow character Edgar Quintero’s PTSD, You’re the Worst significantly defined itself as the sitcom that wouldn’t sugarcoat mental health even for a second.

Keeping Up With the Kardashians

Kim Kardashian struggled with anxiety on Keeping Up With The Kardashians after being robbed at gun point.

Love them or hate them, the Kardashians are honest when it comes to the truly negative and difficult-to-handle aspects of life. And when Kim Kardashian West was robbed at gunpoint in Paris in 2016, she developed a serious case of anxiety as a result, and viewers were given glimpses of her agonizing reality with the disabling condition. And despite mainly being off-camera these days, Rob Kardashian’s diagnosis with diabetes punctuated his own reality series, Rob & Chyna. Whether or not you agree with the Kardashian brother’s approach to handling his chronic condition, his denial and refusal to face up to the realities of the illness were endlessly relatable for any of us who have ever struggled to come to terms with our own diagnoses.

Stranger Things

Gaten Matarazzo of the Netflix phenomenon Stranger Things.

Gaten Matarazzo finally got his big break when the creators of Stranger Things decided to write the actor’s disability—cleidocranial dysplasia, a condition which affects the development of a person’s bones and teethinto the script. In a recent interview, Matarazzo revealed that he’d lost out on several auditions in the past, “Because they couldn’t write in a disability into the show because they had already written the script” (via HuffPost). However, as the casting process for Stranger Things proves, there’s literally zero reason that any role should be defined as able-bodied in the character description. It just shouldn’t, and doesn’t need to, happen anymore.

What These Shows All Get Right

These shows might all be majorly different in content and tone, but they’re linked by the fact that they’re not framed through an able-bodied lens. Instead, each depiction, regardless of genre, explores the highs, lows, and mundane details of disability, chronic illness, or mental health. Even more important is the fact that actual, real life, bonafide disabled people were cast in roles that were rewritten completely or simply created for them. Rather than farming out these roles to able-bodied actors, casting directors, creators, and show-runners took the time to consider disability. And in the cases of Matarazzo, Brewer, and Mitte, character arcs were altered for the better thanks to the actors portraying them.

These shows might all be majorly different in content and tone, but they’re linked by the fact that they’re not framed through an able-bodied lens.

Whether there’s strictly a “right” way to handle disability in the arts is questionable, but thanks to the growing number of crucially truthful roles for disabled and sick performers, the television landscape is getting more and more relatable. For instance, the first show by and starring Maysoon Zayid, co-founder of New York’s Arab-American Comedy Festival, is called Can-Can and is currently being developed at ABC. The autobiographical sitcom will (per Variety) follow a “Muslim woman who has Cerebral Palsy (Zayid), as she struggles to find love, the right career, and discover who she is separate of her opinionated Muslim parents,” which sounds super promising, and a little overdue.

It’s time that the stories of chronically ill and disabled human beings weren’t erased, glossed over, or summarized in a “case of the week” episode on a generic medical show. Sick people are tired as it is without having to fend off another inaccurate, depressing, or infuriating depiction of their well-worn diagnosis. And thanks to the television shows above, that’s slowly starting to change.

Features Roundups

The Best Podcasts For People With Health Conditions

Five podcasts that will make you laugh and feel less isolated as you deal with a chronic health condition or disability.

You can already tell: it’s going to be one of those days. Your symptoms are spiking, it’s impossible to focus on anything and you’ll be lucky if you make it out of bed. On days like these, sometimes it just helps to feel understood. Other times, a motivating kick in the pants is what’s required. That’s where podcasts come in.

Isolation can be a major side effect of chronic illness, but fortunately, podcasts are trying to change that. Just ask Michael James, an avid podcast listener who has lived with a balance disorder for over 19 years,.

“Probably the best thing about the Internet has been that it connects people who may have previously felt completely isolated and alone, and this is especially true for people with health challenges,” he says. “At their best, health-related podcasts remind me that I’m not alone; relax or shift my mood and/or perspective; and clear new paths for thinking about my health challenges.”

Here are some of our favorite podcasts for people managing chronic health conditions.

Made Visible

Made Visible podcast logo.

Made Visible

What it is: According to founder Harper Spero, “Made Visible is a podcast that gives a voice to people with invisible illnesses. The podcast aims to change the conversation around invisible illnesses, helping those who experience them —whether as patients, caregivers, or friends or family members — feel more seen and heard.”

What to expect: A 40-ish minute interview with an individual about their invisible illness, how they cope and what they’ve been able to achieve despite their setbacks. Recent topics included Job’s syndrome, depression, addiction and narcolepsy. Listener Jennifer Rapp comments, “The openness of Harper and her guests gives me insight into the experiences of those who are managing illnesses in their lives. I feel a great sense of gratitude for the generosity of the guests sharing their stories.”

Good for: Hearing about other people’s journeys with chronic conditions.

Listen and subscribe to the Made Visible podcast here. 

The One You Feed

The One You Feed podcast logo.

The One You Feed

What is is: This podcast is based on a parable about two wolves and how the one you “feed” is the one that survives.

What to expect: Host Eric Zimmer begins each episode by asking the guest for his or her interpretation of the parable. Then the interview continues, focusing on how other people keep themselves moving in the right direction. Topics center on mind-body connection, wisdom, motivation, and philosophy.

Good for: While not specifically a podcast about health conditions, this is a fantastic one to tune in to when you need to work on your mindfulness.

Listen and subscribe to The One You Feed podcast here.

Sickboy

Mr. Sickboy podcast logo.

Sickboy

What it is: Three friends get together in this podcast to break down the stigma associated with illness and disease.

What to expect: Irreverent, funny and graphic, this podcast makes you feel like you’re instant friends with the hosts and their guests. A warning, though: it can be medically graphic and cringe-inducing. This is one of our favorites: “I appreciate how dark humor can help shift my perspective on what is a pretty unfunny situation (chronic illness),” says Michael James.

Good for: when you need to laugh about the situations that occur from chronic illness.

Listen and subscribe to the Sickboy podcast here.

Invisible Not Broken

Invisible Not Broken podcast

Invisible Not Broken

What it is: Host Monica Michelle describes Invisible Not Broken as “a podcast that interviews people with chronic and often invisible illness along with panel episodes about issues that affect us with disabilities.”

What to expect: A casual, hour-long conversation covering a range of topics—from sexuality to travel to holiday survival—all within the parameters of invisible illness. Episodes are often filled with practical tips and advice, like good gift recommendations for “spoonies,” (people with chronic illness) and how to travel.

Good for: when you feel like sitting with friends and chatting.

Listen and subscribe to the Invisible Not Broken podcast here.

Mental Illness Happy Hour

Mental Illness Happy Hour podcast logo

Mental Illness Happy Hour

What it is: Whether you suffer from mental illness on its own or as a side condition to another chronic ailment, Mental Illness Happy Hour was designed to make you not feel so alone. Comedian Paul Gilmartin aims to break down the stigma associated with anxiety, depression, phobias and more and brings the listener into a welcoming cocoon of solidarity.

What to expect: Each episode lasts at least an hour, and contains an interview with a guest who discusses his or her own particular struggles. Paul then reads listener mail and discusses issues such as shame, keeping secrets, and struggling with depression.

Good for: when you need to feel like there are other people out there who struggle.

Listen and subscribe to the Mental Illness Happy Hour podcast here.

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. 

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