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When Mom Started Vaping, Her Chronic Pain Disappeared

My mother had given up on ever finding relief for her chronic fibromyalgia. Then her doctor prescribed medical marijuana, and everything changed.

My 72-year-old mother doesn’t drink. She’s never smoked cigarettes or taken drugs. My mother reads Shakespeare for fun. She loves opera and classical music. She and my father own six exotic birds, pets they adore.

My mother is an artist. I grew up watching her draw portraits rendered in charcoal, pencil, and pastel. She continued to draw after my sister and I moved out in the early 90s, entering local art contests and filling up sketchbooks.

I live a couple of hours away from my parents in New York’s Mid-Hudson Valley, so I didn’t notice when Mom stopped drawing until she began tentatively sharing work on Facebook that she’d done on her iPad.

These drawings were different from the ones I remembered as a child. They had a digital flatness to them that wasn’t present in her earlier work. When I asked her about them, she explained that she could only draw in bed using a tablet because she didn’t feel well most of the time. Standing at an easel was impossible. Even sitting at the table to draw had gotten extremely difficult. This was the first time I realized just how bad her chronic illness had become.

My mother, and my two daughters.

A slow descent into chronic pain

My mother has fibromyalgia. She was diagnosed in 2007, the year she turned 61. My kids were six and three at the time. My focus was entirely on balancing the day-to-day needs of a young family.  Maybe that’s why I’d failed to notice that as my own life was speeding up, my mother’s life was slowing down.

When I asked my mother what she remembers about her illness from this time in her life, she described it as coming on gradually. “It started slowly. I was very active, going to the gym every day. Then my daily headaches started to get worse. I hadn’t been getting migraines very often. Now they came back and were more severe.”

I read about fibromyalgia and tried to understand it better, but I was distracted, engulfed in the chaos of early motherhood followed by the frenetic pace of having school-aged children.

When I asked my mother what she remembers about her illness from this time in her life, she described it as coming on gradually.

During one of my parents’ rare visits, my father mentioned that Mom slept until 9 or 10 every morning. It took her a long time to wake up and get moving. Then she would inevitably take a nap, spend some time on the computer and go to bed early.

My parents couldn’t plan anything or go anywhere. My father had taken on the responsibility of caring for the birds, cleaning the house, food shopping and preparing meals. This was a wakeup call for me. I’d had no idea how debilitating my mother’s fibromyalgia had become.

In an effort to reconnect with my mother, I asked her to illustrate a children’s book I was writing. I missed her pencil drawings from my childhood and wanted to feature them in the book. I also wanted to give her a reason to get out of bed, even if it was only for a few minutes a day.

Renewed purpose and connection

My mother loved the idea of illustrating my book. She got a sketchbook, some new pencils, and a tabletop easel so we could work together from afar.

We fell into a routine where I would request a drawing via email and Mom would get to work on the piece. It took her days or weeks to finish a drawing depending on how she felt, but neither of us were in any rush. This collaboration made us closer, gave my mom a new purpose, and helped me understand how her illness impacted her life on a day-to-day basis.

Our daily interactions made me much more cognizant of what Mom was going through. She continued to struggle with daily headaches and fatigue. Botox treatments and pain killers helped somewhat, but bad weather could easily derail her. She was tired all the time. She had flare ups that left her bedridden for days as if she had the flu, but she was determined to work with me.

Eventually, the Botox stopped working. Mom described dealing with her worsening symptoms as “pushing through” the pain. She said, “I’ve always had something hurt. You get used to it. The fatigue was much harder to overcome. It was like hitting a brick wall.” We finished the book, but Mom was getting worse.

Illustration by my mom, Judith Krongard.

 

Cannabis brings relief

In August 2018, New Jersey Governor Phil Murphy signed an executive order intended to make it easier for people to obtain medical marijuana. By then, my mother was once again isolated and depressed, unable to plan things or experience any real quality of life.

“I spent most of my time on the computer. I read a lot. I drew my pictures. I accepted that I was disabled,” Mom said.

By the time Governor Phil Murphy came along, my mother—a 70-year-old grandmother who never had so much as a hit of pot—was more than ready to ask her doctor about using cannabis to get relief. 

Says mom: “I had always wanted to try medical marijuana, but it wasn’t available.”

Her neurologist referred her to a doctor who could prescribe medical marijuana. The process of getting the drug took about two weeks. She left the dispensary with two different strains of pot and a vape pen.

“We went home, set up the vape, and I took my first hit. About 15 minutes later, the headache I’ve had all my life, every day, 24/7…stopped.”

“What happened after that?” I asked.

“We went home, set up the vape, and I took my first hit. About 15 minutes later, the headache I’ve had all my life, every day, 24/7…stopped.”

“Did you cry?”

“I think I giggled,” Mom said. “It literally gave me back my life. I’m no longer a prisoner of the weather. I can get out. The fatigue is just about gone. I’m off Ambien and opioids.”

New beginnings

This past Thanksgiving, my parents were able to come over even though the weather wasn’t good. My mother brought her vape pen and when she excused herself so she could use it privately, I told her it was perfectly fine for her to vape in the living room. It is, after all, her medicine.

Mom has begun adding activities back into her life. At first it was just little things – trips to the store with my dad, breakfast at the diner, doing a load of laundry here and there. Recently she started exercising. “When the weather warms up, I want to take walks outside again.”

My mother is strong. She’s lived with her illness in silence for over a decade, just as so many people with chronic illnesses do.

My mother is strong. She’s lived with her illness in silence for over a decade, just as so many people with chronic illnesses do.

Mom continues to draw on her tabletop easel. She loves drawing nature scenes and animals, especially birds. I’m incredibly grateful that she found something that gives her relief and enables her to do what she loves.

I’m also grateful that she was so willing to share her struggle with me. It taught me the importance of small triumphs and the value of each moment.

Creative Commons photo from the Electric Tobacconist.

Disability

5 Cutting-Edge Tech Products That Could Change The Lives Of The Disabled In 2019

From robot gloves that help people with cerebral palsy, to glasses that let disabled people see what's happening hundreds of miles away, these CES tech breakthroughs could change the lives of disabled people everywhere.

Many of the newest smart designs invoke worlds of possibility—and they’re on their way to our homes.

Held in Las Vegas in 2019, the annual CES (Consumer Electronics Show) provided an international stage for showcasing the latest in technical innovation, with 4,500 exhibitions from around the world.

Since its inception fifty years ago, more than 700,000 new products have launched at CES.

This year, 524 exhibitors demonstrated new products in the ‘health’ category—but it’s not just those designated as health that could revolutionize life for people with chronic illness and disabilities.

Here are five

Ergomotion/iOBED Contour Bed

The Erogomotion/iOBED Contour Bed automatically adjusts itself throughout the night to help people with chronic pain sleep soundly.

What it is: A collaboration between adjustable bed makers Ergomotion and iOBED—the creators of technology that senses users’ individual bodies and sleep patterns—has resulted in a bed that monitors your sleep and adjusts accordingly. The mattress is made up of 80 individual air cells and 8 independently controlled zones, meaning it has infinite potential to detect and alleviate things like uncomfortable bed height, firmness, pressure and pain—all while you’re (hopefully) sound asleep. It can also be adjusted via your smartphone, or voice activation.

Why we’re excited: Insomnia and health issues go hand in hand, whether it’s caused by chronic pain, medication side effects, or anxiety. For the chronically ill or disabled, then, any technology that can help sleep better is welcome. For people with fibromyalgia and rheumatoid arthritis, for example, the Ergomotion Contour Bed will counteract pressure that could cause further discomfort in sore bones, muscles and joints, or even prevent bedsores.

Foldimate

What it is: The Foldimate uses robotic technology to individually assess and fold your clothes as you feed them in. It has unlimited capacity, continuously folding while items are added. It’s not available on the public market yet, but it’s only a matter of time before this technology spreads.

Why we’re excited: With disability, it’s always the smallest things that can cause the most helplessness and frustration. Folding laundry might not seem like a big lift for people in good health, but it uses muscles and joints that can make the chore tortuous for people with chronic pain, and inaccessible for those with reduced mobility. And let’s face it: when your whole life can feel out-of-order, there’s psychological benefits to being able to wear freshly pressed and folded clothes.

 

Tikaway Connected Glasses

The Tikaway Connected Glasses can give housebound people eyes anywhere.

What it is: Tikaway allows users to share what they’re seeing, or view things remotely. Tikaway’s Connected Glasses can record what the wearer sees, or broadcast it live. Viewers can guide the wearer in real time, from wherever they might be.

Why we’re excited: This has huge potential for people with accessibility challenges, both professionally and personally. Chronically ill people working from home can attend critical on-site meetings, or go on vacations that they might otherwise not be able to take because of their health, addressing the isolation and loneliness that can often accompany illness and disability.

NeoMano Robot Glove

The Neomano Glove allows people with cerebral palsy or paralysis issues grip things they otherwise couldn’t.

What it is: This robotic glove enables people who have difficulty using their hands to firmly close their fingers, allowing them to more easily grip and pick things up. The portable glove is soft and fits over the user’s index, middle finger and thumb. A single press on a Bluetooth controller activates the titanium wires inside, closing the wearer’s hand. This simple motion means users can grip utensils, twist open bottles, turn pages and hold pens, and open doors.

Why we’re excitedThe glove could help people with multiple sclerosis, cerebral palsy, Lou Gehrig disease, or spinal cord injuries, or those recovering from a stroke. Being able to pick up and grip tools is something many of us take for granted, and is a vital part of feeling independent. The glove would mean users being able to get dressed, feed themselves, and take part in work that might otherwise be inaccessible.

AWARE Accessible Wayfinding App

The AWARE app allows people with visual impairment issues to interact with virtual beacons spread through the world.

What it is: The AWARE Accessible Wayfinding App from Sensible Innovations basically fills the world with signs that you hear, but don’t see. By using this app, these virtual beacons allow visually impaired people to more fully experience their surroundings, and navigate public spaces in realtime. And it’s not moonshot technology: the app integrates with existing beacon technology (like the technology Apple Stores use to alert you on your phone when it’s your turn at a Genius Bar) and use Bluetooth to provide audio-location information in places like city centers and on public transport.

Why we’re excited: We’re excited by anything that opens up the world for people with visual impairment and allows them to explore the world more easily. For example, when someone using the app nears a bus stop, they’re given the schedule and route information, guided onto the bus, and alerted as the bus approaches each new stop.

 

 

Chronic Illness Diabetes 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!

Chronic Illness Diabetes 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.

Chronic Illness Chronic Pain Essays

My Son Gave Me A Kidney. He Has Been Chronically Ill Ever Since.

I'll probably never know if he got sick because he donated an organ to me, but after years of soul-searching, I'm determined not to let his kidney go to waste.

On May 15th, 2007, my 22-year-old son, Dylan, saved my life.

He donated a kidney to me.

It wasn’t my first kidney transplant. In 1993, over the span of three days, my renal function plummeted to 3 percent, leaving me in dire need of a new kidney. After what seemed like endless tests, I was diagnosed with ERSD, End Stage Renal Disease. But after surviving 5 years on hemodialysis, then spending 8 wonderful years with my first transplanted kidney, I became gravely ill again. For some unknown reason, my body rejected my anti-rejection medications I’d been taking for so long. By the time my symptoms appeared, it was too late to save my kidney.

My youngest son, Dylan, sat beside me on my hospital bed. At 6’3”, he was like a giant as he wrapped his arms around my frail body, enveloping me in hope and love. “Mom, I want to test to be your donor,” he said.

Doctors assured us he would be fine living with one kidney. After much discussion, the tests were administered, and he was a perfect match. On May 15th, 2007, Dylan and I were wheeled, side by side, on gurneys down the long, lackluster hospital hallways to our individual operating rooms.

And just like that, my life became mine again, thanks to my son’s gift.

It’s been 11 years since my son gave me his kidney and I remain healthy, living a normal and happy life. But I can’t say the same for my son.

It’s been 11 years since my son gave me his kidney and I remain healthy, living a normal and happy life. But I can’t say the same for my son.

Weeks after surgery, he began experiencing excruciating joint inflammation leaving him unable to walk or care for himself. He was initially diagnosed with gout. His rheumatologist prescribed several medications, but the results were abysmal.

He has since been diagnosed with fibromyalgia, rheumatoid arthritis, and chronic fatigue syndrome. Additionally, due to the intense pain and crippling flares these conditions present, he quickly became addicted to his pain medications, presenting another challenge to overcome.

His chronic pain left him broken in spirit,  and a prisoner in his home. Since he could no longer work or party, his friends disappeared.

I couldn’t help but wonder if this was due to him donating a kidney to me.

There are no definitive answers for us as to whether organ donation caused his illnesses or made his body more susceptible to them. Studies indicate some donors may be more prone to developing ESRD than others but even those results are not conclusive. Lainie Friedman Ross, a physician and professor of bioethics at the University of Chicago says: “The consequences of organ donation might not be apparent for decades — and the risks are not the same for everyone. Young or minority donors have a higher rate of kidney failure than the general population.”

So maybe the sudden onset of his illnesses were brought on by kidney donation, or maybe it was all a coincidence. As Dylan’s mother, though, I couldn’t help but feel guilty either way.

I felt heartbroken watching my son, the person who saved my life, walking around my home barefoot with a cane. He was unable to wear shoes or slippers due to the inflammation in his feet. It was ironic, because thanks to him I could walk and hike for miles again… just not with him, as I longed to do.

So maybe the sudden onset of his illnesses were brought on by kidney donation, or maybe it was all a coincidence. As Dylan’s mother, though, I couldn’t help but feel guilty either way.

As my son suffered, my guilt grew, because the reality was I was feeling better than I had in a long time. So I temporarily moved in with him, helping with every aspect of his daily routine: going to the bathroom, getting himself into his shower chair, helping him dress, get in and out of bed, and so on..

Mary McLaurine and her son, Dylan, who donated a kidney to her 11 years ago.

As a mother, and the person for whom he had (perhaps) sacrificed his health for, all I wanted was to help Dylan get better. But nothing worked entirely, and even when it did work, the side effects added new wrinkles to his suffering. For example, ome steroidal medications helped with his inflammation and pain, but led to sudden mood swings, uncomfortable boating, and persistent nausea.

He knew I blamed myself for his debilitating illnesses, and the guilt was eating me alive. I did my best not to burden him with my self-blame, but it was impossible for him not to notice, at least a little, the tears that would sometimes fill my eyes as I saw him suffer.

How could I not blame myself?

One quiet morning, when he finally noticed my tears, we sat down and talked. He let me off the hook. He told me he never regretted his decision and would do it again tomorrow. But what he said next was profound.

“Mom, I gave you this kidney because I love you, you gave me life, brought me into this world and I wanted to give you that same gift back. We may never know if the transplant is the reason for my chronic illness, but we do know it has given you a new and wonderful life. And that life will be ruined if you keep carrying this guilt with you, because the doctors have told you that stress can injure your already compromised immune system. Don’t let my kidney go to waste. The best thing you can do to help me get well is allowing me to witness you living your life to the fullest! Joy is good for my soul, and yours.”

“We may never know if the transplant is the reason for my chronic illness, but we do know it has given you a new and wonderful life… Don’t let my kidney go to waste.”

I realized he was right. From that moment on, I tried to focus on my gratitude, not my guilt. Some days were still hard, and  I could feel the guilt rise in my throat like a poison trying to escape, but then I would try to recenter myself, remembering that regardless of whether or not giving me his kidney had caused his health woes, I still couldn’t let it go to waste.

And as my attitude changed, it had a positive impact on my son too. We were now linked, he and I, by the kidney that he had given me. In a way, we both shared a body, and as my guilt went into remission, Dylan began responding positively to new medications. His activity levels spiked, and he was able to get off opioids. His arthritic flares have calmed, and we are optimistic things will continue to get better. Changing to a healthier diet, and routinely exercising has allowed him to get out and do routine shopping, outdoor activities, and even socialize with friends.

Watching Dylan’s health spring back has helped further alleviate some of the guilt pangs that surface in me from time to time. And every year, on May 15th, my son and I celebrate our lives, his monumental decision to donate life to me and my unwavering appreciation and gratitude for his generosity and love. We don’t look back anymore. We move ever forward.

He is my hero.

Creative Common photo by Helen Taylor.

Essays

How Chronic Illness Caused Me To ‘Accidentally’ Get A Tattoo

Fibromyalgia isn't funny, but the reason it inspired me to get my first and only tattoo is.

I love to laugh. Humor has always been a coping mechanism for me. But I wasn’t ready for chronic illness. It was difficult to be told that I’d be in pain my whole life. It just sort of took the life out of me and things got, well, dark. While the main symptom of fibromyalgia is pain there’s a mixed bag of other symptoms you may or may not develop. Fun, right? Like a symptom lottery, everyone ends up with a unique mix of ailments.

One of these symptoms is insomnia, and boy oh boy, did I develop this one! It happened slowly over time. I didn’t notice it until it was really bad. For two weeks I hadn’t slept more than two to four hours a night. The bags under my eyes were shocking, and my mental state deteriorated quickly. I was dizzy all the time. I would forget simple words and names. I often got lost driving.

It all came to head on a Friday morning. I hadn’t slept more than four hours in the last two days. That morning I woke up with what I thought was the greatest idea ever: I should get a tattoo. I’ve always had a small desire to get one, but the reasons not to have always outweighed the reasons to. My religion and family strongly discourage it, and I’m afraid of the permanency of a tattoo. It was always just a silly little idea, but not something I ever actually planned to do. However, sleep deprived me thought it was a great idea!

I hadn’t slept more than four hours in the last two days. That morning I woke up with what I thought was the greatest idea ever: I should get a tattoo.

You know those public service announcements that say drowsy driving is the same as drunk driving? Well, they’re telling the truth. I stumbled into that parlor, probably looking like a lost little puppy. I know I acted strangely while there, but I assume the artist contributed it to the nerves of a person getting her first tattoo.

The aftermath.

What would the design be?  Spontaneously I decided on the word “purpose” for my arm. I had looked up chronic pain and found the quote “purpose exceeds pain.” Not a terrible idea for a tattoo, so that’s a relief. He asked me how big I wanted it, I looked at him dumbly, he made a suggestion, I agreed.

The great thing about getting a tattoo when you’re not exactly coherent is there’s almost no pain. I don’t really remember it hurting at all. In all honesty, I barely remember the process of getting it at all. In my delirious state, I proudly sent pictures to a bunch of friends and called people to tell them all about it.

That night, I slept more fitfully than I had in a long while.0

Here’s the thing. My tattoo is permanent, but it’s a reminder I can still laugh at myself. That things could still be funny under the immense weight of chronic illness.

But the next morning, I woke up in a panic. What had I done! I wouldn’t be able to hide this tatto from anyone; it was way too big. How was I going to tell my family, and my parents? They’d be so disappointed. I sat there in terror until the ridiculousness of the whole thing hit me. Hysterical giggles burst out of me, and I realized that for the first time in months, I was laughing. I had just gotten a tattoo, not because I wanted to, not because I had gotten drunk. No, I got a tattoo because I had a chronic illness and couldn’t sleep. It’s funny if you think about it. Ridiculous, but funny!

It’s important to be able to laugh during chronic illness, says Caitlyn Lundy.

Here’s the thing. My tattoo is permanent, but it’s a reminder I can still laugh at myself. That things could still be funny under the immense weight of chronic illness. Rediscovering humor has been one of the greatest steps in my recovery process.  I’ll make sure I never lose my laughter again. It is my anchor to the world outside of chronic illness. It reminds me that there is so much more. I have a chronic illness, but the world is still bright. There is still joy and laughter and fun to be had, and moments like these help me remember that.

Creative Commons photo by Flickr user m01229.

Chronic Pain Q&As

Making Invisible Illness Visible Through Art

Zara Carpenter's SICK! project aims to unite people with unseen conditions, so they never have to feel isolated and alone.

Not all illnesses are visible. Not all ailments are obvious. SICK! is an arts project set up by UK artist and activist Zara Carpenter, who has fibromyalgia, and contemporary artist Matt Bray. The project runs workshops and curates exhibitions centered around the impact that invisible illness can have in our lives. 

The project has enabled people to express their experience, from the minutiae of living with a non-obvious condition to the emotional distress that can come with it. Demonstrating the importance of art as a vehicle of communication and support, SICK strives to open up the conversation about living with invisible illness and encourage those who suffer from a chronic condition to come out of the shadows.

Folks caught up with Zara Carpenter to find out more about the project. The following interview has been lightly edited for clarity.

Why did you decide to set up SICK?

Zara Carpenter.

My best friend Matt Bray and I were talking a couple of years back. I wanted to do an exhibition of the work I had made about illness and he was curating an exhibition about the body. We realized that we should combine the ideas and do an exhibition about invisible illness. Every time Matt and I met the idea became more solid and something we felt compelled to do. We wanted Rikard’s (Österlund , photographer Zara’s husband) and Xtina’s (Lamb, designer) expertise and ideas so SICK! was born from the four of us, a team effort.

All of us are affected by illness in some way, we have all been through similar experiences (loss, grief, anger, acceptance, defiance) despite having vastly different illnesses. Illness is a leveler; everyone at some point in their lives will be ill or have someone close to them who is ill. It is bizarre that this is the most common thing about people and yet it is something we hide or are ashamed of.

Everyone at some point in their life will be ill… It is bizarre that this is the most common thing about people and yet it is something we are ashamed of.

SICK! sets out to normalize being ill: we need to talk about it to break the stigma. It also allows us to reach out to communicate to people that they are not going through illness alone. 

How have your own experiences of illness and fibromyalgia influenced your artwork?

My artwork has always been a way for me to understand and show visually how illness affects my life. From writing poetry to designing hats, making sculptural assemblages and now hand printing and designing fabrics, creating is a distraction from my pain and also channels my obsessive compulsiveness.

My artistic practice explores the act of creativity as a panacea – shifting my awareness of pain towards something positive.

And how does your creative work help you manage your illness?


It allows me to work through things that are going on in my head that I might be struggling with and it is a distraction from the pain. I have constant pain, but I have managed to be off painkillers for over three years now; I’m not saying it has been an easy thing to do but it was the right decision for me. Now I make things every day. It doesn’t have to be big or important or something that anyone else has to see; as long as I can, I do.

What are the particular challenges of having an invisible illness?

For a large part of my life, I felt alone: on the outside looking in. I was always trying to hide my illness and get on with things and when I couldn’t I would feel guilty or ashamed. Since starting SICK! I have talked to hundreds of people about their experiences and I think that some of the most difficult thing people with invisible illnesses face are:

  1. Not being believed.
  2. Being alone.
  3. Feeling ashamed.
  4. Having no support.
  5. Having to fight for benefits.
  6. Wanting a normal life.
  7. Looking good.
  8. Dealing with the way people talk to you.

We need to be more open about what living with illness is like, so these things do not happen anymore. We also need to educate people on the type of language they use, and clue them in to words that are well-meaning but hurtful.

One important part of SICK is its community – do you think that having a sense of being part of a group of people is important when it comes to managing an illness?

I think it is vital to have a connection to safe people (people you can be you around) and safe places. That’s what is most vital about SICK!: the friendships that have been formed because of it. Being around people who just get what you’re going through is amazing. We have a community of people now who all feel like they can say “I’m not ok today” without judgment and no-one is going to give unsolicited advice or try to make them feel better. That’s powerful. 

Chronic Illness Chronic Pain Essays

How A 2-Year-Old Taught Me The Greatest Lesson About Chronic Illness

Being chronically ill doesn't define my self-worth, but it took a toddler to teach me the lesson.

Sitting on the floor in my parent’s basement staring up at the stairs, I wondered how I would ever climb them. It felt like an appropriate metaphor for the way my life had been going the last few months. Stuck in the dark, in pain, alone and scared. Those stairs stood between me and the only thing that had made any dent in the debilitating pain that had taken over my body: my medicine. Trying to convince myself to stand up, I imagined doing it. Up the stairs, into the kitchen, turn right, open medicine cabinet, relief. I didn’t get up though, because that voice that had been growing inside my mind for the last three months took over. The voice that told me I was worthless because of my illness.

Two months before I had been misdiagnosed with Rheumatoid Arthritis because of joint pain. However, when I developed my cognitive symptoms—confusion, forgetfulness, anxiety—the doctor told me it must all be in my head and I needed to see a psychiatrist. I knew there must be something else going on. Like Captain Ahab chasing his white whale, I spent the next two months obsessively searching for an answer.

So when a doctor finally said fibromyalgia, the relief I felt was overwhelming. But my excitement was short lived. I asked the doctor if he could explain to me what fibromyalgia is. He said “kind of.” He told me that we could manage the pain but that no one really knows why my seemingly healthy body suddenly doesn’t work the way it should. “Some of my colleagues don’t even believe that it exists,” he said to me, further explaining that a colleague of his said it was just another name for hypochondria.

Being diagnosed with an illness that even the medical community sometimes dismisses can be incredibly isolating.

Being diagnosed with an illness that even the medical community sometimes dismisses can be incredibly isolating. I stopped telling people I had it after a friend told me they had heard everyone with fibromyalgia was nuts. I started attaching labels to myself: crazy, hypochondriac, lazy. Every day I told myself what a burden I was on those who loved me, and I began to push even my closest loved ones away.

The author and her niece, Gracelyn.

By the time I found myself at the bottom of those basement stairs, looking hopelessly up at painkillers beyond my reach, guild and blame had become the main way I communicated with myself.  I was so busy bullying myself that day, I didn’t notice my little niece making her way down the stairs to me.

Gracelyn is two years old. She has a button nose, hair so blonde it’s almost white, and the sweetest face I’ve ever seen. In my biased opinion, she is perfect. By the time she was halfway down the stairs, she was already happily shouting my name.When she reached the ground she ran to me and threw her hands around my neck.

In all honesty, I had been avoiding her lately. I guess out of guilt, because I am not as fun as I used to be: Our regular dance parties in the kitchen are now torture to my sore knees. So I distanced myself from her, as I had with most of the people in my life. Her hugs are usually quick, two seconds and she’s off busy with other toddler things.

That day, however, she didn’t let go. She hugged me as tight as her little arms could. It was the most significant hug of my life.

“Up,” she said, pointing up the stairs, demanding yet adorable. I didn’t want to go—the pain was too much–but I couldn’t say no to her.

I got up. It felt more like scaling a mountain than a set of stairs. I wanted to give up multiple times, to slide back down into the basement, but every time I felt myself giving up, her little fingers tugged my hand upward, giving me the determination to keep moving. With her short little legs climbing at the same pace as my pain filled body, we slowly made our way to the top.

No one had sent her. No one knew that I was crying silently downstairs. I had been avoiding her, yet she still came and found me. I wasn’t capable of doing many of the things we had done before, yet she still wanted to be with me. I had an illness, yet she loved me all the same. That day, she pulled me out of darkness, and up into the light both physically and emotionally. And I realized: If that perfect little girl loved me, then I must be worthy of love.

I realized: If that perfect little girl loved me, then I must be worthy of love.

I’m not going to say I had this one experience and magically came to terms with my condition. It’s hard to learn to yourself again when you have a chronic illness, and progress is gradual. If I’m honest, I still have a hard time loving myself sometimes. Now though, when I have dark thoughts, I remember that a pure and perfect child loves me. It makes it easier: easier to be kind to myself even when my pain-racked body wants to believe it’s not worthy of love. And that’s where change comes from, isn’t it?  Doing things even when we don’t feel like it.

Gracelyn probably won’t remember the day she got me to climb those basement stairs when she grows up. She might not even remember it now. But I’ll never forget it: the day a two-year-old helped me realize that chronic illness does not take away my worth.

Heart Disease Profiles

The Frog Inside Her Chest

Rose Young makes tiny sculptures of food. It's the kind of work that requires intense attention to detail... all while a congenital heart defect wreaks havok in her chest.

Rose Young had her first cardiac arrest when she was twelve years old. Now, at 28, she’s had too many to count.

That first time, her heart stopped for fifteen minutes. It took around seven defibrillator shocks to bring her back to life, and she was in a coma for a week. When she woke up, she had no memory of what had happened.

In March this year, Rose did a radio interview about her heart, her life, and her work. It was the first time she’d spoken publicly about what her “bad days” look like, and she found doing so excruciating.

“I feel so vulnerable, even listening to it again now. I hear myself crying, and I cry, again. At myself crying! It’s just really tough to hear.”

Rose has been diagnosed with “abnormal electrical activity”–an adult congenital heart defect–and a prolapsed mitral heart valve.  She has a defibrillator inside her chest; her third one since that first arrest at age twelve. The defibrillator “kicks” her heart whenever it might be going to stop.

“It feels like if someone was to kick you in the upper left chest from the front and in your shoulder blade with a steelcap boot on… to someone else it would look like I was getting punched from the inside.”

“I have irregular heartbeats all day long,” she says. “Even if I get upset emotionally, my heart beats differently. I feel it all day, every day. I’d feel distress if I couldn’t feel it… My way of describing it is like I’ve got a frog, inside a sock, inside my chest, jumping around.”

My way of describing it is like I’ve got a frog, inside a sock, inside my chest, jumping around.

Rose also has fibromyalgia, a condition that causes widespread pain throughout her body, migraines, and chronic fatigue syndrome.

“At my worst, I can’t shower. I can’t stand up because it’s too exhausting, and the pressure from the water hurts my skin,” she says. “Any position in bed is painful. My heart will beat so fast every time I stand up, that will be my physical activity for the day. I’ve had days when I’ve spent three to four hours laying on the bathroom floor because I can’t find the energy to walk to bed.”

“I don’t want people to see me like that, to remember me like that. That’s not me. That’s my illness, that’s not me.”

And most people don’t. Most people will know Rose for another thing entirely: her work as a sculptor. Rose makes tiny replicas of famous food.

Rose hard at work in her studio, making sculptures of miniature food.

Rose’s art is entirely unique, and has captured attention and delight nationwide. People travelled from all over the country to attend her first exhibition in September this year. The exhibition took eight months to put together. Rose creates the miniature replicas of actual meals out of polymer clay, using tools like toothbrushes and needles. Each dish takes between ten and fifteen hours to make, and fits entirely in a teaspoon.

“My pieces are what I call ‘nano’ sculptures. Very very tiny food. I am constantly doing things I can see an end to because I don’t know what tomorrow’s going to be like. With my sculptures, my favorite part of them is I can finish them.”

Rose has now made more than 100 sculptures. But why food?

“I think food is something that makes most people happy,” she explains. “It creates memories and gives comfort.. it’s something we share when we celebrate and when we commiserate.. To say a lot of thinking went into my decision to make food would be a complete lie though. I just love food. However at the time I started sculpting food I had just been put on a medication that made some foods taste dreadful, so maybe subconsciously I was sculpting things I missed eating, but probably not!”

Rose says she gets emails from people calling her “inspiring,” but that’s not how she feels.

“Since I’ve started showing people my art, I’ve had all of these messages that are like “You’re so inspiring, I’m so proud of you. It’s so cool that you’re doing something.” It’s patronizing, you know? I hate that word. I’m just doing what I can do. Just the same way that you’re doing what you can do.”

“I hate that word: inspiring. I’m just doing what I can do. Just the same way that you’re doing what you can do.”

Rose has had periods of her life when she worked full time, but the toll of on her health was high.

“I could work, but I’d just go to work, come home, and go to bed, because I’d be so wiped out. And what’s the point in that? I didn’t get to have any sort of life. I tried really hard to be “normal” and keep up with everyone else, for a long time. But I couldn’t. I accept that now.”

Rose says living with a chronic, invisible illness presents more challenges than a lot of people could ever imagine.

“Sometimes people ask me to give up my seat on the bus, and I’ve just had heart surgery the week before,” she says. “But they don’t know that. I look fine.”

A look at some of Rose’s sculptures.

“Something I bite my tongue with a lot is people’s recommendations of how I might get better. I’m chronically ill. I’m not going to get better. ‘Have you tried meditating and only drinking water from the west side of the island?’… Look, if there was something, I would have found it.”

She likens her body to a car she needs to keep working on: “You have this car that’s not working properly, and you’re constantly trying to fix things, to relearn things. That’s what living with chronic illness is like.”

Rose is unable to take many medications because of the affect they may have on her heart, so she has to find other ways of dealing with her pain. A lot of that means pacing herself, just like a race car.

“There are days for making tiny peas, and there are days for not making tiny peas,” she shrugs. “But people go crazy for tiny food. It’s great. It actually gives me a real boost and it makes me happy that I bring joy and humour to other people with what I do.”

Photos: Tim and Nadine Ellen. 

Chronic Pain Essays

Coming Out Of The Chronic Closet

As a chronically ill teenager entering my freshman year at college, I'm learning that it's time to stop hiding who I am.

I was around eight when I realized that being sick wasn’t the norm. Before that realization kicked in, I thought every kid had as many doctors as I did, that they were in the hospital so much they too considered it a second home. I thought all kids knew what barium tasted like because of their all too frequent diagnostic tests. But when the realization hit that I was different, it hit hard… and when the other kids found out, it was accompanied by bullying.

As I entered high school, I vowed to do everything I could to hide my illnesses, which include Fibromyalgia, Postural Orthostatic Tachycardia Syndrome, and Raynaud’s Disease. I decided to blend in, be “average.” My parents approved. They saw what the years of bullying had done to their daughter–the constant sadness and depression that had crushed her spirits–and wanted it to stop, even if it meant hiding who I was.

But then one day I was rushed to the ER; I had stopped breathing in class.

Yeah, try covering that one up.

Then one day I was rushed to the ER; I had stopped breathing in class. Yeah, try covering that one up.

The aftermath was alright, though. My friends handled it pretty decently, offering support and sending me encouraging texts before diagnostic appointments. But then, I was told that cancer might have been why my breathing stopped that way. It actually turned out to be Recurrent Subacute Thyroiditis, a condition so rare that most doctors will never see a case in their lifetime. But before we knew that, cancer was on the cards, and the possible diagnosis spun me into a hurricane of anxiety.

That night, I poured my heart out in a message to one of my very close friends, Noah, who lived out of state. I didn’t tell Noah everything, but I opened up to him more than I had to any other friend in years. He had bipolar disorder, and had even been hospitalized for treatment, so I thought he would understand.

He didn’t. He ignored me for months after that. When I finally saw him again, he pretended he’d never gotten my messages… but if that was true, why had he cut contact with me? I heard him loud and clear: if we were going to be friends, I would have to go back into the “chronic closet.” My friends could only accept me if I lived behind the facade of good health, but if I asked them to go through something they were not going through themselves, they would be gone.

So I pretended to be healthy. I swallowed my anxiety over the possible cancer diagnosis hanging over my head, and suffered with it silently. Things slowly went back to normal. My classmates slowly forgot about the day I almost died in front of them, and soon, it was like nothing had ever happened. I was just me again, my sickness pushed aside.

But the sicker I got, and the more chronically ill friends I made, I became more and more frustrated about having to hide this massive part of me. I realized it wasn’t fair to have to hide who I was and what I was going through just so my supposed able-bodied “friends” didn’t get their mellows harshed.

It wasn’t fair to have to hide what I was going through just so my supposed able-bodied “friends” didn’t get their mellows harshed.

What really shifted my attitude was being diagnosed with Celiac Disease in September, 2015. After I received the diagnosis–yet another one in my relatively short life–I once again pondered the million dollar question: how long could I hide this illness from my peers? Because the social life of a teenager is pretty much all centered around meeting up and eating food. My diet would give me away.

I kept my Celiac Disease secret for two months. Compared to the years I had spent closeted about my illnesses in the past, it was a breeze. But something had changed. I had reached my tipping point. I was tired of hiding. My true friends–my chronically ill friends, and even a few healthy ones–had shown me there was nothing to be ashamed of. Why was I putting so much effort in hiding?

So I opened up about my Celiac Disease. And sure enough, at my school, I was a pariah again.

Suddenly, instead of being asked about my weekend or the latest homework assignment, I was being grilled about what I could or couldn’t eat. At first, I was happy to educate people, but it soon became clear that these seemingly innocent questions had a mocking edge. Soon, the commentary started: kids told me they’d kill themselves if they couldn’t eat gluten, that they felt just awful for me, that maybe I should stop being so dramatic and just try a bit… whats the worst that could happen?

As my group of friends shrank, the people who really cared about me became worried about me again. They told me it was all well and good to advocate for myself and others because of my health issue, but it had to be “able-body approved.” Be as vague as possible about the grisly realities of being sick. Fluff it up and make it pretty. Be inspiring, but not different.

Even though my social group shrank once I came out of the chronic closet, the friendships I kept grew and deepened

Again, I can’t fault them for that. But even though my social group shrank once I came out of the chronic closet, the friendships I kept grew and deepened. I had friends research Celiac Disease, and who would bake for me, sterilizing their kitchens beforehand to avoid cross-contamination. I had friends who drove eight hours to visit me in the hospital, friends who sent letters of support when I had to travel out-of-state for treatment. These people were my real friends, the ones who mattered; being open about who I was had filtered all of the fakers out.

Now, as I write this, I am in my first week of college at a university 500 miles from home: a university that none of my friends are attending. I find myself in the same situation that I was in four years ago: should I be open about my illnesses? And if so, when?

I wish I could say I knew the answer to this question. I know what my most protective loved ones would say: to keep quiet, go back in the closet, and live my life as a normal student. Don’t do anything to stand out, and people will have no reason to reject you.

But things aren’t that black and white. It is not just about choosing to be open or being closeted: there’s a massive grey area in between the two, and in that gray zone, it’s my choice where I stand. I want to be open. Maybe not entirely, but I’ve seen what openness can do for my friendships. It creates something beautiful: community.

I’ve seen what openness can do for my friendships. It creates something beautiful: community.

It’s first week of college, and college is supposedly where people come into themselves. Here, I’m going to experiment with being open about my conditions, because I’ll tell you what: there’s nothing more terrifying than slowly molding yourself into someone you’re not just for the sake of pleasing the largely able-bodied world. I’d take being open and facing rejection a thousand times over going back in the chronic closet.

Because after all, in the end, the people who leave don’t matter. They were never the kind of people you wanted in your life anyways. It’s the people that stay with you and grow with you who will become your family.

And one day, I hope the world will see this too.


Photo by Dar’ya Sip, published. under Creative Commons license