Immune & Autoimmune Diseases

Confessions Of A Recovering Superwoman

It can be hard to accept, but learning to live with chronic illness means learning to let go.

In the beginning of 2003, I felt like my life was perfectly manageable. I was serving as Poet Laureate of my city and had many projects underway including founding a poetry festival and creating a camp for at-risk teenage girls. I was doing all of these things while holding down a job and raising two young children. I felt like a superwoman.

Then one day my daughter came down with the flu. No problem, I thought. I will just keep her home and take care of her. Then my son came down with the flu followed by my husband. I was taking care of a house full of sick people. Then the inevitable happened: I got sick. I did not as feel as bad as the rest my family. I had a mild fever, and I felt achy and run down. Still, I was still able to take care of everyone.

When my family recovered, I did not. My symptoms lasted for months. My hair started to fall out, and people commented on how sick I looked. My face broke out into a rash, and it was a struggle to get out of bed every morning. After several visits to my primary doctor, she finally decided to send me to a rheumatologist where I was diagnosed with lupus.

After a year of misery, I felt relief. I finally knew what was going on, and I could put together a plan of action. Even better, I had an explanation for other symptoms that had been bothering me for years.

After a year of misery, I felt relief. I finally knew what was going on.

Prior to my diagnosis, I would go out for a day at the beach with the kids and feel sick the next day. The sun felt like someone was sticking burnt matches on my skin. It turned out that lupus causes sun sensitivity. I was relieved to know that the symptoms I had been ignoring were not all in my head.

When I was diagnosed with lupus, my doctor told me that medication would help a lot, but I would have to make some serious life changes. The first thing I looked at was our big house. Before lupus, I used to clean our house top to bottom on my own. Once I was diagnosed, I asked my family to pitch in. I think it took my husband about a month before he gave in to getting a housekeeper.

Author Katerina Canyon.

Once the children were old enough, I sold my house and moved into an apartment near the beach. The house was just too much for me to handle. When I had a lupus flare, I often could not climb the stairs, and I felt trapped on whatever floor the flare started on.

Another thing that changed was that I had to go from caregiver to care receiver. This was a challenge for all of us. It took my family a while to understand that I was not the same person. They did not understand the pain I was in. I had to learn to explain it to them. It took years of communication and years of mistakes, but we learned to understand one another.

My friends and co-workers had to understand that I was not always going to feel well enough to do the things they wanted me to do. I ended up missing a lot of events. There were a few people who did not understand that. That was okay, because I had a lot of good people in my life who supported me.

Despite the sacrifices, I am happy with the way lupus has changed my life.

Of course, the person who had the most to learn was me. I had to learn to only take on things that were most important to me. Most anything I do, I will likely have to do in pain or through illness, so that thing has to be worth it. I decided that writing was worth it.

Early on, I started writing a blog about my life with lupus. Now, I have moved on to writing about other things that matter to me. I write inspirational articles, poetry, biographic and political pieces. I used to work with non-profits but after losing my third job due to my disability, I decided that I would rather write than struggle to hold jobs that were emotionally draining. Learning to live with lupus means learning to let go.

Despite the sacrifices, I am happy with the way lupus has changed my life. Before lupus, I ran around doing all sorts of things without considering how much joy any of the things gave me. Now I am more selective. Writing is something I have always loved to do. Lupus took things away from me, but I get to choose what to give up, and when I gave up less important things, I got more of what I really wanted and needed.

Chronic Illness

When Lightning Strikes Twice

Just because you make it through one diagnosis doesn't mean you're immune to others. When it comes to chronic illness, lightning does indeed strike twice.

“We’re safe here,” my dad said as we sat in his burgundy Buick in the parking lot of the White Hen Pantry just forty-one miles south of Chicago. A thunderstorm had rolled in. My younger sister and I sat in the car staring out the window as my dad explained the logistics of the storm and our safety.

“Cars are grounded by the tires,” he said. “If lightning strikes, the electricity will travel around and go straight into the asphalt. It won’t hurt us.”

“How do you know?” I asked.

“Because it happened to me in high school,” Dad said. “My friends and I were hanging out in a parking lot when our car got hit. It was loud. The car lit up, but we were safe.”

I was eight years old. I never questioned my dad’s logic or his story. His role as protector has always been clear. At thirty-eight I just googled this safety phenomena. While his explanation was a little off scientifically—the tires aren’t what grounds the car –he was still correct. We were safe.

A young Cory Martin with her dad and sister.

Lightning Strikes

From that moment in the parking lot on I preferred to spend storms in a car or resorted back to what my sister and I had always done as young girls –climb into our parents’ bed in the middle of the night and cuddle between them. Whatever raged outside would not touch us until it did.

Lightning struck one summer day a couple years later. We were all at home inside playing a game in the family room, counting the seconds between when we saw the flash and when the resounding boom echoed through the house. As the rain came down harder, the seconds went from 5 to 4 to 3 to 2 to BOOM!

There was a bright light then an immediate bang followed by the distinct smell of smoke. Our parents called 911. Sirens roared and the engines pulled into the driveway. The firemen went into the attic, then climbed onto the roof. The electric bolt had hit the chimney. A few bricks were knocked free from their masonry place, but the burnt smell was just an after effect of a few wires being burned. There was no fire. The house was safe.

There was a bright light then an immediate bang followed by the distinct smell of smoke.

From then on, all major appliances including our Apple IIGs were plugged not directly into the wall but into a circuit protector that was then plugged into the house. The firefighters had said we were lucky. Next time we might not be. We should take proper precautions.

“But lightning doesn’t strike twice, does it?” my mom asked.

The firefighters shrugged. “Better to be safe than sorry,” they said.

And so, we lived under a veil of protection. Circuit protectors, a Buick, then a Jeep, then a Ford Taurus. When I was in high school, we lived in a different house where the basement was finished. We spent storms of the ferocious kind hiding ten feet under.

Author Cory Martin on Venice Beach.

Then Came MS

When I left for college and moved from the comfort of Midwestern suburbia to the heart of Los Angeles, there were no real storms to fear, just an occasional rumble of the earth. I didn’t need the protection of four Firestone tires or the calming presence of Mom and Dad. I was an adult now, ready to face the world.

And I did. I studied writing and literature in school. I graduated. I secured a job. All was calm and as it should be.

Then another storm came. Its bolts more intense than I’d ever seen. When it struck my body, I was unprotected. There was no safety of a car or the arms of my parents. The lightning had two names. Multiple Sclerosis – an incurable, unpredictable disease that silently destroys the coating on your nerves like the lightning that had melted the wires of our childhood home. I was twenty-eight years old when the doctor diagnosed me. I had lesions on my brain, numbness in my arms, and cognitive difficulties.

There was no circuit protector for my nerves. I was left to lie in wait and subjected to a spinal tap that landed me in the ER.

There was no circuit protector for my nerves. I was left to lie in wait and subjected to a spinal tap that landed me in the ER. The professionals were looking for more answers and guidance on a treatment plan, instead, the hole they poked in my spinal column failed to heal. The cerebral spinal fluid that protects the grey matter inside my head and my spinal column drizzled out into my body causing my brain to bang against the inside of my skull. The test had left my brain completely unprotected. It was a storm I’d never experienced before. I had no clue how to walk through it.

My parents flew out from the Midwest to be with me in the hospital. I was an adult who needed their protection once more.  

When the leak was plugged and I was deemed safe to return home, I sat on my couch and cried into the shoulder of my dad. I was exhausted. Scared. And unable to see a future that wasn’t destroyed by disease. For thirty minutes my dad said nothing as the tears flowed from my eyes. We were in the Buick. Grounded. And I finally felt safe once more.

Cory Martin is determined to weather the storm.

The Second Strike

Lightning never hit our family home again. All the precautions my parents took were for naught. There was no reason to fear, yet the circuit protectors remained. Just in case.

For the next ten years, I had no other choice but to keep moving forward. I was lucky that my symptoms were manageable and that the lesions on my brain remained stable. The storm of MS held the possibility to spin into a tornado, but I learned to live with my own DIY circuit protector. I created a bucket list of sorts and powered through with the attitude of saying yes to every opportunity.

For ten years, I lived believing that I had it all figured out. That because I’d contemplated the future with MS, understood the possible outcomes of the what if and what now and what then questions, that I knew exactly what my future held. I thought I was prepared. I thought I could handle anything.

I thought I was prepared. I thought I could handle anything. Then it hit me. Straight on.

Then it hit me. Straight on. There was unbearable pain in my bones. Inability to exercise. The pain I felt was a marathon. The fatigue made work impossible. My writing became jumbled.

I went to the MS doctor looking for guidance. She ran some tests, but she couldn’t make sense of it. The lesions on my brain hadn’t multiplied—she didn’t think it was MS causing my pain this time. My primary doctor ran tests too, but she didn’t have an answer either. She sent me to a rheumatologist. By this point I couldn’t walk up a flight of three stairs without needing an hour-long nap. Still, he didn’t think I had any of the diseases he normally sees, but to cover his bases he drew some blood. When I returned for results, I went into the appointment expecting to hear that it was a fluke thing – a virus, a lack of vitamins. My body had already been struck once. Surely, it wouldn’t be struck again. But his words said differently.

You have Lupus. Take this drug. See you in two months. BOOM! I was struck once more. Unprepared.

 Every Storm Is Different

Even though I tried to predict what my future held with MS, there was no way to predict a future with Lupus. There was no way to know how it would feel to be told I had another unpredictable, incurable disease.

After living with MS for a decade, I thought I had iron clad armor. A steel chassis to redirect the electric current. I thought I was immune to any more blows to my health. And even if I wasn’t immune, I thought that no matter what happened I would know how to deal. But I was no more prepared for Lupus at thirty-eight than I was at twenty-eight when I was told I had MS.

Every bolt is different. Every electric surge a new voltage.

So now here I am. No rubber tires. No circuit protector. Just me and the symptoms of my new disease. Attempting to adjust and move through it all. But how? That I’m not sure.

Yet I do know this…They say lightning never strikes twice. But it does. In fact, it strikes over and over again. It’s just that the same lightning never hits twice. Every bolt is different. Every electric surge a new voltage. You never get struck by the exact same current, but you are guaranteed to get hit more than once. It is a fact of life I now accept, but that doesn’t mean I can’t keep searching eBay for a 1987 burgundy Buick to hide out in until the storm passes.

Chronic Illness Diabetes

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!


Ask Ada: How Do I Have The Perfect Chronically Ill Christmas?

This week, Ada gives advice on how to deal with Christmas when you're newly diagnosed, and how to navigate the New Year's fitness resolutions of your friends when you struggle with an eating disorder.

Welcome to Ask Ada, Folks’ bi-weekly advice column for people impacted by health issues or disability. Want Ada to help you with a problem? Email Ada at or tag @folksstories on Twitter with the #askada hashtag.

Advice On Making My First Chronically Ill Christmas Great?

Dear Ada – This year, after months of fatigue, aching joints, and mysterious rashes, I got an early Christmas present: My doctor told me I have lupus. Since then, when I’m not dealing with symptoms, I’ve been super depressed: most days, it’s a win if I can even get out of bed before nightfall. But Christmas is a big deal in my family, and I’m feeling a lot of pressure to get it together for the holidays. What can I do? I’m in constant pain and have zero energy to get out of bed, let alone go out and shop or do traditional Christmas activities like trim the tree or make gingerbread houses–but my family has been great helping me through this year, and I don’t want to let them down. How can I give them a great Christmas when I’m feeling like this?

Thanks, Lupus the Red-Rashed Reindeer

Reindeer, while this certainly isn’t the type of Christmas present you were hoping for, I’m so glad to hear that after months of suffering you were able to get a diagnosis, so you can begin to treat and manage your symptoms.

Know that it’s OK to feel out of the holiday spirit. There’s a lot happening in your life, and unfortunately, there’s no way to turn on a happy switch just because it’s the holidays.

You say your family has been “great” helping you through this year, which tells me they will probably understand what you’re going through. Sit down with your loved ones—or do a video call if they aren’t close—and be honest. Tell them how much you appreciate their support, but that you’re really floundering right now. Let them know you need some time to rest your body and process this recent news. By sharing your needs with your loved ones and taking care of yourself, you’re actually giving them a great gift: The self-care you need to be present with them throughout the year.

The ultimate gift any person in your family can get this holiday is another year of your love. So take care of yourself this Christmas, and don’t do anything you don’t have the strength to do.

But it sounds like you really want to be able to share in the Christmas spirit with your family, even in this difficult time. So consider adapting some holiday activities to match your current abilities. Maybe, instead of trimming the Christmas tree with your family, you’re the official videographer, capturing memories to look back at with fondness for years to come. Or if you have young children at home, have your partner or another family member lead the gingerbread-house making this year. Everyone can compete against each other as you rest, and then you can judge whose house wins (Pro tip: Make a different award for each child, such as “best use of candy” and “best theme.”)

The ultimate gift any person in your family can get this holiday is another year of your love. So take care of yourself this Christmas, and don’t do anything you don’t have the strength to do.

Remember: Your loved ones want nothing more than your health and happiness. Talking with them or inviting them over to your home will maintain that community you’ve felt with your family all year long–through Christmas and into the future.

How Do I Get Through The Holidays With Anorexia?

Dear Ada,

I am currently in recovery from anorexia. In recovery, we’re asked to do things that run counter to societal norms: cut down on exercise, gain weight, enjoy the occasional dessert. The process leaves me steeped in guilt and shame.

A handful of my friends are actively working on their diets and exercise plans, and share all their fitness schedules and results with me on a regular basis. None of them know I am struggling with an eating disorder. I am very happy for them, and at the same time, I find these conversations triggering. I want to support my friends and maintain my privacy without losing my mind. What can I say to help cut back on the body talk?

Love, Ella

Ella — The world seems to have a hyper-obsession with food and fitness, which, as someone with anorexia, you understand all too well. At their best, conversations about food and fitness can drive conversations and build connections between people, but if you’re struggling with body dysphoria, these conversations can have the opposite effect, and trigger unhealthy thoughts and behaviors. And with the New Year just around the corner, weight-loss resolutions are sure to spill across dinner tables and over the group texts you and your friends share.

Which brings us to your current situation. Your friends don’t understand that sharing their weight loss resolutions with you is triggering. How could they? If you’ve been managing your eating disorder privately, your friends won’t know you’re struggling. In their eyes, they probably see a woman who’s inspiring to them: a friend who put forth an effort to lose weight and achieved results. It’s an incorrect assumption, but perhaps a natural one in a culture which glorifies fitness and weight loss: they aren’t seeing your internal struggle with an eating disorder.

None of which is to say you should tell them you struggle with anorexia if you don’t feel comfortable doing so. You have a right to your privacy. So here are some other options.

Say that there are many different healthy body types, and that you’re uncomfortable with the way our society assumes that a woman can not be beautiful or healthy if they aren’t thin.

First, you could try being honest with them about how you feel, without going into detail about your anorexia. Say that there are many different healthy body types, and that you’re uncomfortable with the way our society assumes that a woman can not be beautiful or healthy if they aren’t thin. Say something like: “Let’s make a resolution that we’ll only share positive thoughts about our bodies with each other, okay?” And if that doesn’t work, there’s always the good ol’ standby of aggressively changing the topic.

That all said, ultimately, the only way your friends are really going to understand what you’re going through is if you let them in. You say you’re struggling with guilt and shame in your recovery. It might feel hard to be vulnerable and open up—it requires a leap of faith–but vulnerabilty and honesty is what ultimately separates real friendships from mere acquaintanceship.

This isn’t to say you need to open up to everyone, but consider telling a few of your closest loved ones. Take a look at the people who are triggering you the most right now, and ask yourself if their friendship is worth investing more into. If it is, consider telling them the truth about what you’re going through, so that you both can be better friends to one another? Or are you comfortable where your friendship already is, in which case, maybe you should distance yourself for awhile if they keep on bringing up triggering subjects.

Either way, whether by opening up to your friends or by redirecting the conversation toward more productive, body-positive topics, be proud: you are acting as an agent of change. Not only will these efforts help bolster your own well-being, but you’ll be setting the stage for your friends to think differently about body talk, too. Soon, they may stop conflating weight loss with health, and encouraging those around them to find more interesting challenges than step counts and lost pounds.

Let’s be real: We’re all a little tired of putting our bodies on display as the topic du jour. This might just be the refreshment (and resolution) your friends need as they head into the New Year.

Are you facing a problem that is being complicated by a health condition or disability? Folks’ advice columnist Erin Ollila wants to help. Email and tell us your problem.

Chronic Illness Chronic Pain Rare Diseases

How Chronic Illness Slowed Me Down For The Better

Maybe being happy is more important than how productive you are.

I’ve worked hard my whole life. I’m the kind of person who can’t even fathom taking a break until the day’s work is done… and when it is, I’m still looking for another project to better myself. No one had ever accused me of being lazy before.

Yet the moment I got sick—as soon as I needed a break and have people take care of me for a change–it seemed like everyone came out of the woodwork to insinuate that the real problem was my laziness.

Too Busy To Slow Down

I was first diagnosed with rheumatoid arthritis at 26, after a busy holiday season in which I’d planned an office party for 200 people and published my first book. As my company’s sole event planner, digital marketer, receptionist-slash-office manager, and community action coordinator, it was my job to make sure everyone else was happy, even at my own expense.

Despite enjoying the work and gaining valuable experience, it was often more stressful than the construction management job I’d just left, and the initiatives I’d worked so hard on did little to boost employee morale. I wasn’t in a position to create real change despite expectations and it left me discouraged, but I needed this job. I had rent to pay, and I’d found so many flaws with my previous jobs that my resume had lost focus.

I was exhausted, and I thought that was normal. My boyfriend suggested I see a doctor, but I brushed it off: I didn’t have time to see a doctor.

An Unexpected Diagnosis

But it was inefficiency that eventually caused me to cave. Trying to wrap a small pile of Christmas presents, I could barely do it because of a recurring pain in my hand. For two weeks I brushed it off, letting the pain grow until I kept dropping things, and even grabbing an object the wrong way had me shouting in agony. So, I used some personal time at work, convinced I was wasting it, and went to the doctor.

I’ll never forget the pained look on my doctor’s face as we ran through my symptoms.

I’ll never forget the pained look on my doctor’s face as we ran through my symptoms. He discovered swelling in areas I hadn’t even had pain in yet. A week later, after a day of feeling like I had shards of glass in my wrists making it impossible to even hold a door open for someone, I got the call: my bloodwork showed that I most likely had rheumatoid arthritis.

I knew what rheumatoid arthritis was. I suffered from Raynaud’s Phenomenon as a teenager, when it was explained to me that with my family’s history of lupus, rheumatoid arthritis might be a further risk. I knew the disease for causing debilitation, reducing lifespans, and forcing early retirement. Meanwhile, I defined myself by keeping busy. What did this mean for my career, my home life, and my dreams to travel, which I hadn’t even started? Because of my pursuit of a stable career, I had barely left my home state of Massachusetts.

No Sympathy From Work

Within months of my initial diagnosis, I’d spent thousands of dollars and used up nearly all of my personal time. While my manager and HR knew vague details about what I was going through, I fielded jokes from others who did not. “Taking a half day to play hookey?” staff joked, not knowing how many vials of blood I was about to get drawn, or the way dozens of miles of driving fatigued me. Comments were made when I stopped washing other employees’ dishes because I now had problems holding glasses. Multitasking left me winded, and people raised their eyebrows when I spent less time glued to my desk and more time stretching. Was I imagining dirty looks because I took so many half-days? I wasn’t. Coverage for my job became a serious issue, in part because there wasn’t even a plan in place for when I took a routine vacation. I snapped when someone told me that my absence was truly felt. What about what I felt?

Was I imagining dirty looks because I took so many half-days? I wasn’t.

The solution seemed to be to transfer to another department so I could work from home. However, I continued working both the new and the old position for months, giving both my all. Despite doctor’s orders not to overexert, I still did work that landed me on my couch for days afterwards. When it was suggested that I not be paid for helping my company pull off an event I endured physical pain to produce, it confirmed what I already knew: a corporate job like mine wasn’t going to work for me anymore.

Finding Support Online

A pretty young woman smiling into the camera with her dark hair parted down the middle.

Ashley Dufault.

I desperately needed relationships with people who understood that I wasn’t lazy, so during this time, I grew close to the rheumatoid arthritis community on Twitter. There, I met people like me who had had to adapt because of rheumatoid arthritis by leaving their careers, working part-time, becoming freelancers: each was someone, like me, who had been whipped into a vortex by rheumatoid arthritis, and had been forced to question their values. One woman admitted to me that she’d downsized her house and sold her business to create a lifestyle she could be happier with.

“And the fatigue? It never really goes away,” one Twitter poster told me bluntly.

I fought hard against my fate. I tried aromatherapy, exercise, long walks: anything that might help keep my symptoms at bay, and give me my old momentum back. But nothing worked, and on my long evening walks, I would mourn the me that used to be, and all the problems in my personal and professional life that rheumatoid arthritis had caused.

Then, one day, I didn’t care as much. My values shifted.

Being Happy Is More Important Than Productivity

Maybe it wasn’t so important to constantly be achieving. Maybe what was important was to accept yourself and live the life you’ve been given to the fullest. Maybe being busy is less important than being happy. And maybe I don’t owe the people who think I’m being ‘lazy’ because I’m chronically ill a damn thing.

Maybe I don’t owe the people who think I’m being ‘lazy’ because I’m chronically ill a damn thing.

Rheumatoid arthritis forced me to put the brakes on “efficiency” and slow down long enough to chase my dreams, not just my next task. So instead of continuing to work a job that was pushing me to my limits, I decided to believe in myself and pursue one of my dreams: my own writing and editing business. I now have clients who appreciate what I do, and I’ve even finished the first draft of my second book.

Most exciting of all? The woman who was too busy to leave New England is finally going to follow her dreams and do some travel. I have a vacation scheduled to visit a different region of the U.S. this year. It’ll be my first time on a plane, and next year I hope to visit my first foreign country.

Creative Commons photo by Jerald Jackson.

Cancer Chronic Illness

Is Medical Crowdfunding Really The Answer To A Broken Healthcare System?

These three stories of individuals who used crowdfunding to raise money to pay their medical bills show that sites like Indiegogo are just one piece of the puzzle when it comes to navigating the system.

Life with a health condition can be a stressful journey, but financial woes can make it harder. In a broken health care system in which few people can truly afford to be chronically ill, many patients have to get creative. That’s why many Americans are turning to crowdfunding—raising money on the Internet using social media for promotion–to pay their health care costs, with middling success. According to Business Insider, half of all funds raised on crowdfunding platforms like Indiegogo, YouCaring and GoFundMe are used for medical costs,

Lost in the greater debate about whether healthcare crowdfunding is evidence of a broken system or innovation in action, though, are the personal stories.

Shelley Simmonds.

Fraser Simmonds was born with a rare life-limiting condition called Duchenne Muscular Dystrophy, a genetic degenerative muscular condition which over time causes muscles to waste away and die currently has no cure or treatment options. Although the Simmonds family lives in the UK, which has free healthcare through the National Health Service (NHS), not all of Fraser’s expenses were paid for: for example, the powered wheelchair he needed to socialize independently with other kids, which was not considered a “medical requirement.”

The family eventually launched a GoFundMe campaign for essential care for Fraser. And they’re doing their part to pay it forward: the family now regularly organizes charitable events to raise money for a treatment for Duchenne.

Fraser’s Mom, Shelley, explains that it wasn’t easy for the Simmonds to turn to crowdfunding. The family was always financially independent before Fraser was born, and it was hard for them to ask for help. “Having a disabled child is a huge financial worry,” she says. “People do not always understand what little financial help is given to those that genuinely need it. I would do whatever it takes to give Fraser the best in life so sometimes you have to put your pride aside.”

Yet because he lives in the UK, Fraser Simmonds is one of the lucky ones, whose medical costs are still mostly paid for by the NHS. Here in the US, though, the generosity of strangers on crowdfunding platforms can be the difference between life and death.

Amongst other ailments, Linda Ruescher lives with lupus, a chronic autoimmune disease that affects 1.5 million people in the U.S. alone. At age 64, just three months before being eligible from Medicare, Linda lost her insurance and developed a pulmonary embolism. A life-saving hospital visit left her with an astounding medical bill of $130,000, as well as out-of-pocket prescription bills that cost over $2,100 a month.

People do not always understand what little financial help is given to those that genuinely need it…

Although Linda returned to work just six days after her hospital visit, those costs were unaffordable. “I had to choose between a roof over my head and food in my belly or the medication,” she says. “I just needed to hold on three more months until I qualified for Medicare. I was sick, exhausted and terrified of being homeless,” she says. Crowdfunding was her only option, and after a social media push from her friends and family, she reached her crowdfunding goal. But it didn’t come without a personal cost. “Asking for help struck at the core of my identity,” she says. “It represented a loss of independence, a loss of ability to support myself and my needs, and even worse, it forced me to recognize and face the severity of my health condition.”

What also gets lost in the debate around healthcare crowdfunding is that money alone can’t solve many of the problems that people with chronic health conditions face. When Nicholas Emerson’s hardworking father died from a rare and aggressive form of Non-Hodgkin’s lymphoma in 2016, his absence as the sole provider for the family was sorely felt. Nicholas and his sister set up a crowdsourcing page to try to alleviate some of the strain. They met their goal, but found that money alone couldn’t fill the hole that had been left in their family.

Linda Rueschler used crowdfunding to pay her bills after a sudden embolism.

“Crowdfunding sites help to pay the bills but that’s only one aspect of care that’s needed,” he says. “Such sites can never do enough to help with all the other time-sensitive, rapidly-changing, emotional, psychological, and physical needs involved [in a sudden health emergency] that, unless you’ve gone through your own version of this, you will never fully understand.” That’s why he created Supportful, a platform that allows families to crowdsource the tangible acts of support they need from their friends and families, like fundraising, meals, gifting, volunteering, and more.

There are no universal panaceas to navigating the complicated world of chronic illness, and crowdfunding is no different. Even if you can raise the money you need through crowdfunding your medical expenses, it can only help ease the burden of having a condition touch your life, not cure it completely. Until our system evolves enough to meet the full spectrum of needs a person might face on their healthcare journey, crowdfunding will only be one piece of the puzzle.


Chronic Illness Chronic Pain

Agent Lupus in the F.B.I.

As an FBI agent, Shahna Richman was trained to handle everything from bank robbers to serial killers, but it never prepared her for lupus.

Shahna Richman wasn’t diagnosed with lupus until she was 29, but it explained so much. “Just odd childhood things,” she says, now 48, a private forensic and security consultant in Evanston, IL. Things her family explained away with “Shahna has a nervous stomach,” or “Shahna is prone to sun rash.” During her sophomore year of college, she got mono and pneumonia simultaneously, and also found out she was severely anemic.

Later, as a police officer in New Haven, CT, the ailments piled up: Richman was diagnosed with hepatitis, thought to be caused by an errant syringe. And one day, her eyes turned bright red, which her doctors thought must have been caused by a fire extinguisher she had used to put out a car fire two days previously. “Now I know it’s part of iritus,” she says, a painful inflammation of the eyes that can accompany lupus.

Richman suspects lupus may have also been behind her many joint blowouts and broken bones after the years. After being admitted to the FBI in 1996, at a training session in Quantico, the 5’2”, 115-lb Richman (the second smallest person in class) was ordered to wrestle a 6’6”, 300-lb pound man (the second largest person in class.) “I had him in a choke hold and he just stood up swinging. It was humorous, but I went flying.” Richman dislocated her shoulder. “One of the instructors I was friendly with put me against the wall and was like chck,” she says, imitating the sound her shoulder made when it was popped back in its socket. “They pumped me full of cortisone and I was good to go.”

Shahna Richman trained to be an FBI agent for years, but she never planned for lupus.

It was, of all things, a suspected windburn that got Richman her diagnosis. As a road racer, she was used to facial redness, but one day at work, she developed a butterfly, or malar rash, which worsened as the day went on, despite the fact that she was indoors at the FBI Rolling Meadows satellite office outside Chicago. The rash grew bumpy and thick, to the point where one of her co-workers insisted on driving her to an allergist.

Paul Detjen administered epinephrine but Richman’s symptoms made him think to run a test for systemic lupus. “I’d never heard of it before, and it was off the charts,” Richman says.

The way she explains it to people unfamiliar with lupus, Richman’s immune system is like “putting 100 preschoolers in a room with nothing to do and watching what happens to the stuff in the room: they’ll destroy it.”

The way she explains it to people unfamiliar with lupus, Richman’s immune system is like “putting 100 preschoolers in a room with nothing to do and watching what happens to the stuff in the room: they’ll destroy it.” Her lupus is a form of super-immunity that affects her entire body and will destroy it if left unchecked.

Armed with the diagnosis, Richman better understood what could trigger her symptoms so that she could attempt to manage her health and her job. Light, for instance. She had risen high enough through the FBI ranks to earn her own office—one with UV lights over her desk. “I was getting sick every day and I couldn’t figure it out because I’m a dummy,” Richman says, acknowledging the irony of a trained FBI agent getting taken down by the wrong light bulb. “Then I got a desk lamp and I started feeling better.”

Stress is another trigger. Richman worked in VCMO, which stands for violent crimes major offenders. “My squad handled bank robbery, fugitives, serial murderers, kidnapping, and the internet exploitation of children,” Richman says. In 2001, she worked on the Shanksville 9/11 plane crash site, identifying remains by their tattoos. “Everything I worked in is just a big pile of PTSD,” Richman says.

Her pride in her work kept her struggling to balance her illness with the stress. “As far back as college I had an interest in the FBI,” she says. After getting her undergrad degree at the University of New Hampshire, she pursued a masters in forensic pathology at Yale while working as a police officer, all the while aiming for the FBI. “They accepted one out of every 5,000 qualified applicants back then,” she says. “But I was always of the mindset, ‘Why not me?’”

Finally getting to the FBI was a thrill. “We do wear suits. We do flip open those credentials,” Richman says. “It is an incredible feeling when you’re a new agent, to knock on someone’s door and say ‘FBI, Special Agent Shahna Richman: you’re under arrest.’”

“It is an incredible feeling when you’re a new agent, to knock on someone’s door and say ‘FBI, Special Agent Shahna Richman: you’re under arrest.’”

Her proudest moment as an agent came in 2006 when Richman, after doggedly working the case on her own, saw to the conviction of three skinheads who terrorized a black family in Fox Lake. “Those victims were children. Their families were so deeply affected by the case,” says Richman. “In any other case I worked, I never felt a greater sense of justice.”

No matter how dark, violent, or depressing the case, nothing compared to the struggle that was managing and concealing Richman’s lupus. This was fairly simple at first. “When one medicine would stop working or I’d develop an allergic reaction, we’d move onto the next one,” she says. In the meantime, in the years before automated computer systems, she could reschedule gun range dates if her arthritis made her hands feel too stiff. Richman’s best friend in the bureau, who knew she had lupus, took care with her during defensive training sessions, aware that Richman was especially fragile after high doses of prednisone: “It has eaten my bones.”

Richman told herself that she was physically able to do her job, but she says she knew it was a lie – an exhausting one.  “I remember walking around the office, smiling, then going to the bathroom and shutting the stall, taking that plaster smile off my face and that relief of, ‘I can just stand in this bathroom for five 5 minutes and just be, instead of having to hide who I really [am].’”

She experienced some relief with Rituxan, a chemotherapy drug commonly used for the treatment of lymphoma, but couldn’t escape its side effects. “I distinctly remember being in an interview with a custodial subject with another agent, but I had to excuse myself from the room very quickly, run down the hall, and I had to vomit in a trashcan in the bathroom. I washed my mouth out, popped some gum, went straight back into the interview room like nothing was wrong.” It was a low point. She realized that her disease wasn’t just affecting herself; it was affecting her job and her co-workers.

Why did she put herself through all this? Richman says simply: “Because I wanted to be an FBI agent. “

Why did she put herself through all this? Richman says simply: “Because I wanted to be an FBI agent. “

Ultimately Richman’s hand was forced when it came to revealing her condition—her special agent in charge discovered she was on Rituxan, which he was familiar with. He asked Richman if she had cancer, and she told him the truth. She eventually learned that systemic lupus erythematosus is a disqualifying medical condition when it comes to being an FBI agent.

Shahna with her husband.

After turning down a job teaching at Quantico, Richman accepted an official medical retirement, and went on to serve as the director of security at the Illinois Holocaust Museum, as well as a private bodyguard to high profile entertainers, politicians and athletes, consultin. She is also serving as an adviser for a Chicago play about an FBI agent with PTSD (it’s based loosely on her life.) Her husband, whom she met at work in the FBI Chicago field office, continues to work as special agent, which can be painful. “If I were married to a layperson, it would be easier. It wouldn’t be in my face every day.”

Almost a decade later, Richman knows that the FBI made the right call when they retired her. Unlike other people with lupus, she has not seen any remission in the sympotoms of her disease.  “I can’t be an agent any longer. I knew that then, I know that even moreso now. Watching my health decline over the last ten years, they absolutely did the right thing.”

But she still hates not being an FBI agent. “I mourn the loss of that job every day,” she says. Her eyes get very big, and shiny. “I hate it. But they did the right thing.”

Chronic Illness

Mixed Blessings

Multi-ethnic patients can have a harder time matching with a bone marrow donor. This nonprofit aims to change that.

Bone marrow donation can save the life of a patient with a blood disease like sickle cell, lupus or leukemia. But unlike blood donation, bone marrow donation requires a similar genetic makeup between donor and recipient, so mixed race patients can have much harder time matching with a donor because ethnic minorities are underrepresented in the bone marrow donation registry.

After Athena Asklipiadis, who’s part Japanese, Greek, Italian, Armenian and Egyptian, happened upon a bone marrow drive and learned about this problem, she was inspired to launch Mixed Marrow, a nonprofit that aims to register more diverse donors. She also helped create a documentary around the issue.

Folks talked to Asklipiadis about the importance of bone marrow donation and how Mixed Marrow is spreading the word. The following excerpts have been edited for clarity and brevity.

How did this issue come to your attention?

Blood-related diseases were on my radar because my aunt had battled lymphoma and passed away, so I was searching for some cause to get behind. That was around 2008, about a year after she passed away, and it was kind of serendipitous that I happened to run into a bone marrow drive at a Japanese cultural festival in Los Angeles.

The patient that was being highlighted was Krissy Kobata and this patient was half Japanese like myself. She was in her twenties at the time, so I found a lot of similarities with her story and mine. When I was reading some of the materials they had at this drive, that was the first time I was really aware of the fact that ethnicity played a large role in [bone marrow] matching. I registered try to see if I was a match.

At that time I was involved in a lot of mixed race kind of communities online, and I was really surprised that not a lot of people my age were really talking about it or knew about it. I was just shocked that nobody was really talking about Krissy or other people like her in California. Other mixed people were just kind of rare to get on the registry. I started sharing online, and it kind of compelled me to want to start my own organization.

.Athena Asklipiadis and other Mixed Marrow volunteers

So, how do you register as bone marrow donor?

There are two different ways you can register. You can either go to a live drive that’s happening–most states have a Be The Match recruiter or organizations that do bone marrow drives at public community events. You could also register online. You fill out the application portion on the website and they’ll send you a swab kit. Once you get the kit, you just swab the inside of your cheeks and send it back. The kit will then be processed in a laboratory and you will be added to the donor database.

What was your biggest challenge with Mixed Marrow?

I think our challenges are pretty similar to other recruiters around the world. It’s really difficult sometimes to try to outreach to the public who have no idea what being a donor means. They have a lot of misconceptions that it’s super painful or that you’re awake during the bone marrow operation. We don’t want to coerce or like pressure somebody register if they’re not ready or they’re not educated enough.

We do our best to try to educate people and we’re very honest with them. If you are called to be a matching donor, you will either be donating marrow (a surgical procedure under anesthesia) or non-surgically when stem cells from your blood are taken from your arm called PBSC donation.  In both cases, your body will replenish the donated cells within a couple of weeks.  And most donors are able to return to work and normal activity very quickly. Dispelling myths is probably the biggest challenge and that’s why I created a documentary.

Tell us about your documentary, Mixed Match.

My professional background is actually in entertainment and broadcasting, so I felt that media was a good way to share these stories. I pitched the idea to Canadian filmmaker Jeff Chiba Stearns. I didn’t know him, but I had been familiar with his work. I just sent him a blind message on Facebook. I wanted to create something that educated people but also tapped into the real life stories of the patients that are young and lively. I wanted show that these are everyday people who deal with [blood] disease and it could be curable at the hand of a stranger.

It was about six years to complete the film. So Jeff and I took over 200 hours worth of footage [the finished film is 96 minutes]. Thankfully, last October we were able to release it. It’s screened at over 30 film festivals so far. Every screening has a bone marrow drive, so people have the opportunity to sign up.

How have audiences responded?

We’ve won several awards, audience choice award and jury awards, for the film. The most important thing though above all that, is that we’ve able to register several groups of donors to the registry that have either been compelled at the time of seeing the film or they signed up online later.

Besides from the documentary, are there other ways that you’re performing outreach?

We’re all volunteers completely, so we do a lot of outreach online. We do drives at different events, and then we do a lot of talks where we’ll go to a college campus, and talk about this issue with cultural club or different ethnic groups. We just let them know how important it is and that minorities are really under-represented [on the bone marrow registry]. The film has been the major focus in the last year just because it’s been a really good tool at showing people the stories without having to do so much heavy reading.

Have you matched with anyone?

No. It’s very, very difficult to match with somebody. It’s about a one in 500 chance you’ll be called, and then you would have to go through a series of others test to see if you are a perfect match for somebody. Unfortunately, I’ve never been called. I’ve been registered since 2008, but then there are people that get called two months after being registered. I’d totally be willing, but I’ve not had that opportunity yet.

Is there anything else that you’d like readers to know about registering or about Mixed Marrow?

This type of donation is not at the mercy of just doctors and research and science. It’s really based on humanity, and just being willing to help somebody. So, I just think that there is something really beautiful about that, that we have a cure within ourselves. A lot of people are afraid to do for a stranger or someone they don’t know, but if you put yourself in their shoes or put your mother or your sister or somebody in a patient’s shoes, you would hope that whoever the stranger is in the world would answer that calling and be on the registry. This is just one really unique way of that we as average people can do an extraordinary thing for somebody.

Want to register as a bone marrow donor? Search for an upcoming drive near you or sign up online.

Chronic Illness

The Patient Whisperer

In medicine, plain language saves lives, which is why Jennifer Pearce dedicated her career to helping patients understand doctors, and the other way around.

Jennifer Pearce, the founder of Plain Language Health, was standing in her driveway on a December morning in 2006 when she came face to face with the woman who would change the course of her career.

“One day I picked up the paper from my driveway, and on the front page was an article about a young woman with lupus named Nikki White,” Pearce says. “Here she was, not much younger than I, and [the article] recounted how — through a series of mishaps, miscommunications, misunderstandings, and administrative snafus — she lost her battle with systemic lupus and lost her life at 32.”

The article that changed Jennifer Pearce’s life.

Pearce herself was already 15 years into her own lupus journey — an experience so fraught with confusions that it had led her to change careers to patient engagement advocacy. But White’s story in particular motivated Pearce to double down on her efforts. In White’s tragedy Pearce recognized the fate that could all too easily have been her own.

“That’s the day I decided. I already knew how to speak Patient; I needed to learn how to speak Health System. I decided then that I would earn a Master’s degree in Health Care Administration so I could set about effecting change from the inside.”

Entering the System

Jennifer Pearce was just one day shy of her 20th birthday when she first found out she had lupus.

The California native had begun experiencing odd symptoms during the summer between her sophomore and junior years of college, starting with a bad cough, extreme fatigue, and an aching feeling in her lungs.

Jennifer Pearce.

First, Pearce was diagnosed with whooping cough. (It wasn’t.) Then blood work suggested she had syphilis. (She didn’t.) More appointments and tests determined the whooping cough was actually a type of lung inflammation called pleurisy, while the false positive for syphilis turned out to be Antiphospholipid Antibody Syndrome (APS), an autoimmune condition that causes blood clots. APS is seen in about half of all lupus patients.

Eventually a physician put the conditions and clues together. “It took about three months, quite a few tests, and quite a few diagnoses to figure out that I indeed had systemic lupus,” Pearce she says.

Systemic lupus erythematosus, or simply lupus, is a chronic autoimmune disease in which the body’s immune system attacks its own tissue and organs. The inflammation that results can manifest in symptoms as varied as facial rash, joint pain, cough, photosensitivity, unexplainable fatigue, confusion, and memory loss.

Pearce’s condition, which she has now managed for more than 20 years, would ultimately prove relatively mild. But rather than the experience of lupus itself, it’s the experience of being a lupus patient that has made the greatest impact on shaping Pearce’s career.

Navigating the System

From the start of her diagnostic journey, Pearce says, “I was interacting with the health system by myself, and I was very passive because that’s how I’d been raised. You don’t challenge the doctor; you listen and nod your head and say thank you. And boy, did that lead to an unpleasant few months.”

Like most people on long and twisting healthcare paths, Pearce found herself being bounced around “from primary care to specialist to specialist to specialist,” navigating the health system without a map, compass, or rudder. In fact, she eventually came to realize that she didn’t even speak the right language.

“I would leave these appointments not fully understanding what had just transpired,” she says. “I knew I was seeing some of the best specialists in the field. Yet despite having a college degree from a good university and being relatively articulate, I left feeling like an idiot. I just couldn’t understand. And I thought, What am I doing wrong here?”

“My big transformation,” she says, “was realizing this wasn’t my fault.”

“My big transformation,” she says, “was realizing this wasn’t my fault.”

Pearce had been working as a marketing writer in a PR firm in San Francisco when her doctor suggested she enroll in a research project at the University of California, San Francisco, aimed at identifying the genes associated with autoimmune diseases, including lupus.

While having blood drawn for the study, Pearce flipped through the program’s enrollment materials. “Being a marketing person, I thought they were . . . Let’s just say they could be improved.”

Pearce’s career as a patient advocate began rewriting medical literature for free to be more easily understood.

She volunteered to re-write the materials for free. “It was 100% selfish, because I wanted them to enroll enough patients to understand this disease better so they could cure it,” Pearce says. But the project ended up benefitting her professionally as well. “It gave me the first taste of what it felt like to write about something I cared about,” she says.

The study’s investigators were so pleased with Pearce’s work they offered her a job. Although it meant taking “a huge pay cut,” she says with a laugh, the position represented a convergence of her personal and professional lives, allowing her to use both the skills gleaned as a writer and the experiences gleaned as a patient for a common purpose: to translate healthcare information into plain language that everyday people can understand.

This need for plain language was perhaps most evident in that research study’s informed consent form.

Working the System

To enroll a patient in a research study, researchers must make clear in writing the study’s purpose, procedures, risks, and potential benefits. They must also lay out practical and legal information, such as the patient’s rights, how their personal and medical information may be used, how long the project will last, and what is expected of the patient’s time and efforts. Together, this set of information forms the basis of the patient’s informed consent.

But Pearce says giving her consent to that genetics research study was anything but informed. Rather, the consent form consisted of pages and pages of legal and medical gobbledygook, the ramifications of which she had no hope of fully comprehending.

The problem lies with too many cooks and not enough empathy.

“With these types of forms, it’s very important that people understand what’s happening,” she says. “But they’re not written to promote understanding.”

The problem, according to Pearce, lies with too many cooks and not enough empathy. Many consent forms, she says, tend to be crafted like contracts rather than informational documents. Legal and regulatory wording sneaks in, as does the highly specialized language of the medical and scientific experts leading the research. What results is a hodgepodge of insider jargon, written at a reading level far beyond that of most adults.

In the process, patient understanding gets sacrificed or ignored. “Not out of malice,” she stresses, “but because it’s an afterthought. The irony is, it’s the most important part of the process.”

Pearce felt the genetic research study too important not to participate in, so she signed the mysterious consent form and hoped for the best. She then dedicated her next eight years at UCSF to translating study information into language patients could actually understand and engage with, in part so others like her wouldn’t have to choose between making empowered decisions and contributing to the greater good.

“Life begins at the end of your comfort zone.”

Getting organizations to acknowledge and address these systemic fractures, however, Pearce says, can be akin to pushing a boulder uphill — a boulder that feels extra weighty on the days her own condition flares up.

Pearce has learned to manage her condition, which manifests for her primarily as joint pain and occasional fatigue, by listening to her body — though she admits that, even after 20 years, sometimes her enthusiasm for life can outweigh her listening skills. The invisible nature of lupus also creates a challenge.

“One of the hardest things is that you can look perfectly healthy on the outside but feel poorly on the inside,” she says. “Joint pain and fatigue aren’t visible.”

But knowing how much worse her condition could be, however, keeps Pearce devoted to the task at hand. “I struggle with it certainly. [But] I feel a responsibility to those who have to spend all of their time managing the condition,” she says.

Fighting the System

This past December, Pearce struck out on her own to promote health literacy and patient engagement as a full-time independent consultant. She now works with organizations on the provider, payer, and patient sides of the healthcare transaction — a new angle she hopes will make her efforts even more effective.

“Health is a bottom-line business, period,” she says. “You can only take things so far within those parameters.” In contrast, she hopes the knowledge she’s accrued over her 18 years on the inside will now contribute to helping health systems, communities, patient groups, and policymakers simultaneously from the outside.

Pearce particularly wants to help patients become stronger advocates for themselves, whether that’s in dealing with doctors, understanding paperwork, figuratively navigating care-related systems like insurance and pharmaceuticals, or literally navigating hospital halls.

Pearce’s annotations explain how the system failed Nikki White, an otherwise well-educated, engaged woman who should have been able to navigate it.

But if the deck is already stacked against patients, what can they do to protect themselves? To start, Pearce says, they must accept that healthcare is a game full of wild cards they can’t control.

“If you walk into a healthcare situation where you’re afraid, you’re stressed, you’re ill, or the medication you’re taking has affected your cognitive functioning, your ability to perform tasks and your prose literacy, document literacy, quantitative literacy — that all diminishes,” she explains. “That is why, when you’ve just been told bad news, someone might be talking to you for another 15 minutes, but you don’t hear any of it. It has nothing to do with how intelligent we are, how much school we’ve had. It’s that we’re human beings. This isn’t a case of deficiency on the part of the patients. This is a case of context.”

Unfortunately that context is not built to accommodate patients’ fears, anxieties, and confusions. With many doctors rushed to fit in as many patients as possible to keep the lights on and staff paid, patients are often not afforded sufficient time to absorb and process new, often distressing information, and formulate and articulate appropriate questions. By the time patients are able, it may be weeks before they see their doctor again — at which point, they may be bombarded with new information. The rhythm of the health system, Pearce says, is out of sync with the rhythm of being a human being.

The rhythm of the health system, Pearce says, is out of sync with the rhythm of being a human being.

That’s not to say patients should succumb to feeling powerless and fold, however. Rather, they must recognize these healthcare realities and learn how best to play the hand they’re dealt in order to get the system to work for, rather than against, them. They must be ready to push back.

That means asking questions until they understand the answers, snapping photos of unclear signage, and calling out forms and instructions they don’t understand. It also means being prepared to squeeze the most out of their scant 10-20 minutes of doctor-patient face time.

One tactic Pearce recommends for medical appointments is writing down ahead of time the three questions the patient most needs answered and articulating those questions to the doctor as soon as he or she walks in the door. Doing so sets the agenda for the meeting and guides the conversation to what the patient most needs to accomplish.

Pearce also insists patients start prioritizing their own bottom lines. They must let go of the conservative, deferential approach to medical care and start treating their clinical encounters like any other transaction.

“Would we ever leave the Verizon store without our questions answered about our new phone?” she asks by way of comparison. “No, we’re going to stand there and insist, because we need this phone to work.”

Just like with the phone company, she says, it’s up to the patient to get their medical money’s worth — or throw down their cards and take their business elsewhere. On this point, Pearce pulls no punches. “If you can’t get your needs met with that provider — because that provider is always late, always rushed, doesn’t like to listen, is impatient — switch doctors. You are in control of this. If that appointment isn’t setting you up to succeed, then it’s not worth your dollars or your time.”

Immune & Autoimmune Diseases

How A Comic Book Disease Helped Me Come To Terms With Lupus

When it comes to getting people to treat sickness seriously, a fictional disease can sometimes be more powerful than a real one.

My cousin’s daughter is a willowy redhead with a long neck like mine. She has come to visit me with her husband and two little girls.

I notice he’s a little hands-off as a parent, letting her do all the heavy lifting. She makes breakfast for the kids, fixes their lunches, makes dinner and bathes them at night. He doesn’t.

She and I have a moment alone. Sitting over a glass of wine in my dining room she tells me that she has ulcerative colitis. Boom, I think, strike three of deadly autoimmune diseases in our family. Her little brother had another autoimmune disease that killed his liver and thus him, before he was 30. She is 32.

When I was 25, doctors told me that lupus nephritis would kill me before I turned 26. My own antibodies were mistakenly attacking my healthy kidneys and couldn’t be stopped. A miracle saved me, but that’s another story; the point is, there’s a family tendency towards autoimmune disorders, and as she sits in front of me, I realize I need to get her to focus on saving herself before her disease flares.

It could be her life.

She has to have less stress. She has to take care of herself and allow herself to be taken care of. She can’t be a martyr. Her husband has to step up. Neither of them are treating this seriously yet, I can tell. She needs to advocate for herself. How can I break through to her before it’s too late?

So I tell her a story.

Brenda Starr dreams of the mysterious Basil St. John.

When I was growing up, I always wanted to be Brenda Starr, the red-headed female reporter out of the comic strips.

When I was growing up, I associated myself with another willowy red-head, Brenda Starr, the fearless female reporter out of the comic strips. Brenda was in love with the mysterious Basil St. John, who had a disease that needed the nectar of a black orchid to keep him alive. If he didn’t fly back to the jungle every so often to get more of his black orchid serum, he would die.

It wasn’t always opportune for him, or for Brenda, who eventually married St. John. If you didn’t know he was sick, Basil’s sudden disappearances could seem selfish; likewise, flying back to the jungle constantly could be inconvenient for both of them. But his life was on the line. He needed to take care of his health first, and his health required Black Orchid nectar.

I tell my cousin’s sister that I have always tried to treat myself as if I had the Black Orchid Disease. Then I tell her countless little anecdotes about the ways my life had changed, and the many small sips I had to take from my own vial of Black Orchid serum, since I first found out I had an autoimmune disorder.

I have always tried to treat myself as if I had the Black Orchid Disease.

I tell her about the last time I went with friends to a concert, and had to have them drop me in front while they walked back from parking. I tell her about how sometimes the fatigue coming home from work is so bad that if I can’t get a bus seat, I’ll take a taxi; it’s cheaper than kidney failure.

Sip sip.

I tell her about how, when the joints in my fingers swelled and couldn’t type as well anymore, I went to my boss and asked him to get me better equipment. I tell her about the time I couldn’t grip the doorknob hard enough to get out of my New York apartment, and had to call the super to let me out; because of my Black Orchid disease, I always now keep the door partially open all the way.

Sip sip sip.

Basil St. John needed to return to the jungle periodically to refill his vial of Black Orchid Nectar, which was the only thing keeping him alive.

I explain to her that because of my prescribed steroids, I always have to walk in the shade. I wear a hat all the time and use an umbrella in the sun. Foods I love are now off-limits. My face sometimes puffs up, my clothes don’t fit, and the tiny hairs on the back of my neck grow out in corkscrews, even though my hair is straight.

Autoimmune diseases are no joke. They require vigilance.

These are the symptoms of my own personal Black Orchid Disease. Hers will be different, I tell her, but she needs to keep her vial of serum ready. Even though she still feels fine and still looks beautiful, she will have to change her life to stay alive. Because autoimmune diseases are no joke. They require vigilance.

When she said her goodbyes, I wasn’t sure she understood what I was trying to say. But several weeks later, she mentioned the words “Black Orchid Disease” on the phone. Later, I saw an Instagram she posted of her husband folding laundry with the girls, something he’d never done before. The next time they visited, she left the dinner table to put the little one to bed and when she came out she said to her husband, “Your turn.”

I smiled at her. She got the memo and so did he.