Immune & Autoimmune Diseases Q&As

HIV or Not, He’s Still Josh

Josh Robbins' own diagnosis launched him on a path of activism that has made him a vital voice in the HIV+ community.

Josh Robbins’ first step towards becoming an HIV activist came just weeks after his own diagnosis, when he shared the news that he was HIV+ in a February 2012 Facebook post. “I wanted people to hear it from me,” he says. “I wanted to tell my own story, but I also wanted to be a resource to people in my community, really anybody, related to HIV.”

Since that brave admission seven years ago, Robbins has expanded his social media education and advocacy.. From his home base at ImStillJosh.com, Robbins maintains an active social media presence on Facebook, Instagram, Twitter, and YouTube. Healthline.com selected I’m Still Josh as one of 2018’s best HIV blogs, and the National Gay and Lesbian Journalists Association has recognized it for excellence.

Besides his blog and social media, Nashville-based TED-X talker Robbins regularly speaks to university and other audiences, offering inspiring and practical information for those living with HIV and those who care about them. We spoke to Josh to learn more.

John-Manuel Andriote: What interested you in being an HIV advocate?

Josh Robbins: I didn’t know I was signing up to be an HIV or peer advocate for activists when I started my blog. I just wanted to be able to tell my story in a way that was honest and authentic and real. In doing that it became relatable. I also did it because when I was diagnosed I couldn’t find anything online for someone who looks like me. The only thing I knew [about HIV] when I was diagnosed was the movie Philadelphia and Magic Johnson. I was 29 years old at the time and no one had told me in my life that they were HIV-positive, so I was literally the only person I knew that was positive. I was kind of lonely, and I didn’t want other people to feel lonely. That’s why I started the blog and social media accounts.

The only thing I knew [about HIV] when I was diagnosed was the movie Philadelphia and Magic Johnson.

What sorts of issues and concerns do you see in people living with HIV that are similar to, or different from, those of people living with other chronic conditions?

I say in my talks that we’re all dealing with something. My mom has MS. She and I have a lot of similarities just in terms of autoimmune disorders and how things affect us in our bodies and that sort of thing. I think the stigma for some people living with diabetes is very similar to that of someone living with HIV from a perception standpoint. I think people that live with psoriasis a lot of times get judged, obviously for their physical appearance.

I think people who are living with chronic health conditions understand that stuff happens, and that we’re all dealing with something. So I think there are similarities in exploring a condition, learning about it, researching it, finding peer support, making sure your adherent to your treatment and medical plan. And then there is all the stuff you have to deal with in dealing with doctors, getting to appointments, and the financial stress of dealing with a chronic condition. I think those are some of the concerns that are pretty similar.

Have you experienced stigma related to HIV?

Yes I think I have, specifically in relation to potential dating partners or sexual partners. There’s always a lack of education and information. I understand because before I was diagnosed, I was one of those people. I blocked people on dating apps because they had HIV, because I was scared anI didn’t want HIV and so I didn’t even think about it. I just didn’t want to have to deal with it and I thought that would work.

As far as other stigmatizing stuff, I don’t experience a ton of stigma because I also speak out against it. I think people, particularly people I know, are either gaining education and learning as well or they are certainly not just going to say some crazy things to my face because they know that I’m going to reply.

I did lose my best friend through this. I think it’s a situation where she couldn’t deal with the possibility that people would be really mean to me. She dealt with it with the way she knew how, which was to run away from me. That was really tough and hard.

Before I was diagnosed, I was one of those people. I blocked people on dating apps because they had HIV…

People living in Nashville are very aware of my activism. If they are in the country music field or space, and they have to think about the group of people they’re around I am a liability to their reputation. I don’t think it’s fair but I think that happens. I have had more than one friend who was an artist who walked away from a friendship with me. That kind of sucked, but that’s how it goes. It is important for me to say that even with that, I still will not shut up about HIV and trying to help people who are living with the virus to live better lives or help people who are negative to stay negative with prevention.

It was a decision I had to make, and I did make before I started my advocacy, which was: I could never be in love again, I could never get married, that’s a possibility. I could lose my friends, I could lose my family, though I didn’t think that was a possibility. I could literally be standing by myself alone and I would still take the decision that I was going to speak up. My safety wasn’t a concern, and it was right for me. So that is how it went down.

When did you learn you had HIV and what were the circumstances?

I was part of an HIV vaccine study with Vanderbilt University. I got regularly HIV tested. I was actually diagnosed very fast. On, November 30, 2011, I was HIV negative. On December 18, 2011, I was exposed to HIV and I got sick on January 2, 2012. I got my final diagnosis on January 24, 2012.

All of that happened because I was a volunteer in an HIV vaccine study, a clinical trial. One of the huge benefits for me of being in that trial was that I was able to get a diagnosis so quickly. I was immediately linked to the care I needed. People I trusted, because I had been part of that vaccine study for over a year, those were the people who delivered the news to me. So I wasn’t in a foreign, stunted setting. I was in the clinic where I was used to being, and had a good rapport with the staff and director. So even though I didn’t want that diagnosis, I got that diagnosis from people who were so caring and so authentic and meaningful. For that I am eternally grateful to them.

How many hours a day, on average, do you spend on social media?

It’s my job, so I’m on social media in some form maybe 15 hours a day. It sounds insane, but it’s true. I do try to step away from it sometimes and you will see that if I’m taking a break. But at the end of the day I’m constantly receiving messages from people who may have just received a diagnosis. I know that’s the worst day of their life and I try to respond to them as quickly as possible. It’s not always possible, but I do try to respond quickly to those messages. They come through every relevant social media platform that I’m on. Luckily, I’m in a position of influence, and I have a responsibility that is sometimes overwhelming to respond to these people and try to help, or at least listen, and that is what I try to do.

I’m constantly receiving messages from people who may have just received a diagnosis. I know that’s the worst day of their life and I try to respond to them as quickly as possible.

Do you have any advice for others to help build up their social media following?

It’s important for people to be organic and authentic, and not to share information with the hope of increasing their followers. If they share information with their followers, their followers will then organically share the information with their own followers. There is no fast track to building audience on social media with respect to chronic health conditions, but there are tactics you can use, such as when to share information on social media. You want to make sure the content you share is interesting to your followers so they engage and share it.

Sometimes it’s funny to see some of the content that has gone viral. One time, I had a video that literally took five minutes to make and that video has been seen on Facebook by like 50,000 people. Oh my god! It was just something I threw together about using makeup if you were living with HIV, and how that is something that can make you feel better. My messaging was pretty simple: If you feel something like that that makes you feel better, just do it. It’s not that you are not trying to be who you are, or trying to mask your identity. It’s like someone with cancer, if they wear a wig after losing their hair, it’s not that they’re trying to hide their head, but that the wig makes them feel better. I did a video on my phone and posted it, and that is one of my most watched videos on that platform.

If you feel something like that that makes you feel better, just do it.

I think you have to listen to yourself as an advocate for those kinds of moments that pop in. That one was a real-life moment, not something that was scripted or that I could preplan. I just thought while I was doing concealer that morning in the bathroom, “My goodness how many other people either want to do this or have thought about it but are scared other people will make fun of them like I was?” So I just tried to do a video that spoke to that on the personal topic, and I’m glad I did. There are other videos I have planned for weeks and weeks and nobody watched!

 

Chronic Illness Immune & Autoimmune Diseases Profiles

Healing Her Gut Through Bread Baking

After a stomach disorder (possibly ulcerative colitis or Crohn's disease), Sarah Owens turned to baking and fermenting foods to help heal her gut.

A blight had crept into the rose garden at the Brooklyn Botanic Garden, and Sarah Owens was beside herself. As a rosarian, or rose cultivator, Owens was in charge of the well-being of more than 5,000 roses at one of New York City’s largest public gardens.

The rose bush leaves were turning red, crinkly and brittle. Owens spent hours kneeling in the soil examining the plants and scouring research to formulate a recovery plan. At the time, Owens – now a baker, cookbook author and sought-after expert on fermented grains – was fresh out of horticulture school and working multiple jobs. The Botanic Garden had hired her to solve the rose problem, and she taught horticulture classes on the side. She was running herself ragged.

Soon, Owens too fell sick.

Severe bouts of diarrhea and vomiting frequently left her curled up on her apartment’s bathroom floor. Many days, she couldn’t go to work. She’d always had a sensitive stomach, but these symptoms were debilitating. “They cut into my work life and personal life, and forget about having any kind of intimacy,” she said.

Owens struggled with flare-ups for months. She’d be doubled over in digestive pain for days, then the pain would subside, only to start up again a few months later, and worse than before. It was a vicious cycle. One Friday after work, Owens planned to join co-workers at a Brooklyn bar to celebrate the birth of a colleague’s baby, but then her stomach started to convulse. She rushed home instead and spent the weekend in bed.

“I felt like I was missing out on life,” she said. “I couldn’t celebrate this really important life moment with the people who mean a lot to me.” That night was a turning point.

Owens was scared to get a bleak diagnosis, but soon after marched herself into her primary care doctor’s office. She tested negative for celiac disease and food allergies. Her doctor referred her to a gastroenterologist who ordered a colonoscopy – it was normal – and put her on antibiotics for bacterial overgrowth, which made the pain worse. Maybe it’s Crohn’s or Ulcerative Colitis, her told her. He suggested steroids.

Around the same time, one of Owens’ close friends had been diagnosed with Crohn’s Disease and was taking steroids. Owens watched her deteriorate. “That’s when I decided I wanted to try to take my health into my own hands,” Owens said. “I started to take a more natural approach, and to tinker around with my diet.”

Owens cut out processed foods and started eating more fruit, vegetables and meats. She started noticing grains like quinoa were irritating her stomach. She stocked her fridge with fermented foods like sauerkraut and kimchi to boost the number of good bacteria in her belly. She made herself sleep more; she took on less side work. It was a holistic approach.

“I realized a leaky gut was leading to all these symptoms,” she said, referring to a condition that occurs when certain foods, stress or antibiotics damage the intestinal lining, allowing food particles and bacteria to leak into the bloodstream. “I was doing too much,” she said, “and stress was exacerbating everything. I needed to heal my gut.”

“I was doing too much and stress was exacerbating everything. I needed to heal my gut.”

Shortly after, it occurred to Owens that the same method might also work in the rose garden. So she got to work replacing its soil with an organic, pesticide-free variety, and brought in perennial plants to diversify the garden and attract helpful insects.

“Plants are like the human body,” Owens said. “If you don’t feed them with a long-term view in mind, you can end up with some very serious issues. For plants it’s soil, for the human body it’s our immune system.” Around 70% of our immune system is in our gut.

Owens has made a name for herself as a baker of artisanal breads.

Owens flew home to Tennessee for Thanksgiving that year feeling a bit better. One day she slipped away from family to browse in a local bookstore, and came across a worn paperback from the 1970s that caught her eye, “Adventures in Sourdough.”

Owens had always loved baking. As she dug deeper into the book, her background in horticulture helped her understand why fermented grains are easier to digest than others. Then a lightbulb went off. Maybe she could support her healing by combining her fondness for baking with her newfound appreciation of fermented foods.

She did just that. Owens started out baking with sourdough in her home kitchen. She found the fermentation process made it possible for her to digest the bread. “The alchemy is so magical,” she said. “I love creating in the kitchen. I love bread. I love a good crusty sourdough loaf made with heirloom or ancient grains.”

Soon, friends were asking for loaves. Eventually, she contacted the owner of a local CSA who agreed to include her bread among its offerings. Then, she took the plunge. She rented a wholesale baking space in Queens and started a subscription-based bakery – BK17 Bakery – after leaving her job at the rose garden. She uses only heirloom, stone-ground flours from small mills across the country and supports sustainable agriculture.

Now, she sells her handmade artisanal bread and cookies to customers around the U.S., including to those with chronic diseases. Sourdough has a lower glycemic index than other breads, and Owens counts people with diseases like diabetes as regular clients. She’s written two cookbooks, one a James Beard award winner, on sourdough and rustic baked goods and spread. A third book is forthcoming.

“Plants are like the human body. If you don’t feed them with a long-term view in mind, you can end up with some very serious issues.”

On a given day in her kitchen, Owens might whip up a batch of chocolate buckwheat cookies with sourdough and walnuts, or a grain-free and refined sugar-free tahini cookie with molasses, cocoa, almond flour and orange zest. Another favorite: a honey lace cookie with dark chocolate and bee pollen on top. Her cookies were recently photographed by a national magazine. She also experiments with homemade vinegars and brews kava, a fermented drink made from stale bread.

Sarah Owens hard at work in her kitchen.

Owens travels the globe to encourage an interest in fermentation. In Syria, she taught refugees to bake with sourdough. A bakery in Russia invited her to teach this year. She’ll also give workshops in Mexico and Australia.

She misses the Botanic Garden, but nurtures her passion for roses by caring for private gardens in New Jersey, Long Island and Connecticut.

“I loved my job at the garden,” she said. “Sometimes letting go is one of the hardest things you can do, but one of the best things you can do for yourself.”

Ultimately, the rose garden recovered, and so has Owens. Since her foray into the world of sourdough, her extreme diarrhea and vomiting have disappeared. “My immune system is a lot stronger,” she said. But she’s still susceptible to stomach trouble if she doesn’t take care of herself, and it’s the same for the roses.

“Once the roses are infected, disease never really goes away,” Owens said. “But if you take care of them, there aren’t as many detrimental effects. Their lifespan is longer.”

Immune & Autoimmune Diseases Profiles

How Frida Kahlo Helped This Burlesque Dancer Recover From Paralysis

When Irene Delgado was diagnosed Guillain Barré, channeling the Mexican feminist icon helped her recover, and get back on stage.

The day after she left the hospital, Irene Delgado was on stage, in a floral crown, peasant blouse, turquoise skirt and black Mary Jane flats. She stripped her costume to reveal a medical corset, just like the ones Frida Kahlo wore. At the end of the act, Irene broke herself out of the corset, put her arms in the air, and cried, “I’m free!”

It was a fitting gesture. Like Frida, Irene had suffered debilitating pain, undergone intensive tests and diagnosis: X-rays and spinal taps, blood transfusions and physical therapy, after six weeks in the hospital.

Irene has soulful eyes, a shaved head, tan skin and a free, infectious laugh. She’s 48, but it’d be hard to guess her age, and harder to tell that beneath her small frame is a whole lot of fortitude. Irene was born and mostly raised in the Bronx to Puerto Rican parents. For the past 20 years, New York City had been her home, while she worked as a burlesque performer and costume designer and stylist and other odd and end jobs.

48-year-old NYC burlesque performer Irene Delgado.

One early morning in November 2016, she woke up with a strange, pulsating sensation going down her legs. The painful sensation continued through the day. As she sat, cutting fabric, she felt her muscles spasming. When she attempted to relax, later, the sensation returned: a shock of numbness and electricity, pins and needles. Not only was it going down her legs and feet, but it had started moving into her arms. “I freaked out,” Irene said.

On her first visit to the emergency room at her local hospital, she waited for five hours, in so much pain that she couldn’t think. When she stayed in any position for too long, she started to cry. Her legs were jerking, out of her control. “I didn’t know what was going on. If I had experienced something like this before, then I could pinpoint it.” But the pain was completely foreign, and the doctors gave her few answers. They sent her home with an anti-inflammatory shot, and blamed the pain on anxiety.

She returned to the hospital three more times over the next two weeks. Each time, she left without a diagnosis. In the meantime, the pain escalated. She was so weak that she could hardly eat. She started losing the ability to use her hands. When Irene had to finish a costume for a client, she asked a friend for help, and directed on exactly what to do. For a short while, she grew hopeful that the pain had plateaued. But when it returned, it started to fire up her lower back. She couldn’t sit down and limped when she walked.

Finally, a friend who worked as a ER doctor drove her to NYU Langone to find answers. When she went into the ER that day, her heart rate was 138 rpm, beating so rapidly that she was gasping to breathe. It wasn’t her anxiety that was causing her suffering: something was going on inside her body.

She stayed at the hospital for the next six weeks. Every day, there were a series of tests and attempts at diagnosis. Three vials of blood drawn every day, MRIs and CT scans, X-Rays, procedures that Irene had rarely experienced before. “There was a piece of me going everywhere, all over the United States,” Irene says, laughing.

Doctors speculated that she might have had Multiple Sclerosis, and she tested positively for Lyme disease. Then they noticed the excessive proteins she had in her spinal fluid. After a spinal tap, they told her that she likely had a version of Guillain Barré Syndrome, a rare autoimmune condition in which her body viewed the proteins in her spinal fluid as foreign invaders and started to attack itself, damaging her peripheral nervous system.

For treatment, she underwent five days of plasmapheresis. The doctors hooked up a PICC line from her neck to her heart. The line filtered out her blood and replaced it with fresh plasma. Irene didn’t know what the illness meant for her future, but she and her partner, photographer Adrian Buckmaster, tried to make the best of the stay. Buckmeister recreated the iconic photo of Frida Kahlo in her hospital bed with Irene’s costume. They befriended the nurses and attendants, and spent a happy Christmas in the hospital, when a steady stream of visitors brought food and coquito liquor from “ten in the morning until ten in the evening.” Irene’s friends created a GoFundMe, and in three days, it raised enough money for Irene to pay her rent until June.

In the next three weeks, Irene slowly relearned to use her limbs. “I felt like I was a newly born baby.”

In the next three weeks, Irene slowly relearned to use her limbs. “I felt like I was a newly born baby.” Not only had the illness disrupted her nerves, but the extended bed-rest shortened her muscles. “When I left, I couldn’t walk properly, couldn’t think, I was taking nine different medicines, I was very emotional.” It was hard to explain what she’d gone through, hard to explain the intensity of her experience.

After getting sick, Delgado turned to Frida Kahlo for inspiration.

The night of her Frida Kahlo performance, Irene took two Oxycodins and channeled the artist on stage. Frida had always been Irene’s favorite painter, but now, she had a different understanding of the artist’s work. In her paintings, Irene says, “you can see her loneliness, her fragility… and you can see her strength.”

It was a physically and emotionally grueling experience. The actual stage time lasted only five minutes, but there were hours of waiting and prepping and primping. For Irene, simply sitting down was torture. But she wanted to keep her performance slot: “I didn’t want to be forgotten about.”

Over a year since the illness hit, Irene is still numb from her knees down to her feet — “if I were to scratch my leg, I can’t feel it.” The worst of illness has passed, but Irene thinks she’ll live with the residual numbness for the rest of her life. Irene is still sewing gowns and coats, and performing on stage. The illness has changed her life in one major way: it helped her start a new business, a line of scented creams and lotions and body oils and bath salts, scented and lovely and infused with transdermal magnesium, which she discovered while fanatically looking for ways to reduce pain.

The afternoon we spoke, Irene’s partner was Photoshopping each product in the line, adjusting the curves to reflect the warm or cool shadow of a face cream. She sold the line for the first time this February at a market at a kinky art salon and mixer, and plans to open an Etsy shop. Adrian and Irene have been together for twelve years, but in the skincare line, Adrian saw something different. “This is very special, “Adrian said. In creating the line, he saw something in Irene manifest, something he thought she could do all along. “I guess it took going through the pain,” he said. “You changed your view of the world in many ways.”

Irene made creating the skincare line look easy, because she loved it. And perhaps she’d been gearing up for it all along: Irene had worked for Sephora when it first opened as a boutique in NYC, and had spent years traveling the country doing Dr. Brandt’s microdermabrasions on clients. “I sold the hell out of other people’s products,” she says, “now it’s my turn to build my own.”

Immune & Autoimmune Diseases Q&As

Visualizing The Data Behind A Child’s Bruises

When guitar god Kaki King's young daughter Cooper was diagnosed with a rare blood disorder, she turned to award-winning data visualizer Giorgia Lupi to make sense of the hurt.

Giorgia Lupi is a renowned designer and artist who aims to better understand human nature by visualizing data in expressive ways. Through work with clients such as Google, Microsoft, the United Nations, and the World Health Organization with her team at Accurat, much of the philosophy behind Giorgia’s work asks us to rethink what “data” is and challenging us to incorporate empathy into our definition. She calls it “data humanism,” and her latest project is as human as it gets: a look at the fragility of the human body and the emotional rollercoaster that comes with the uncertainty that can cause.

Data visualizer Giorgia Lupi.

Lupi met Kaki King about a year ago during a brand identity collaboration for Hennessy’s 200th year anniversary. A musician and composer, King has seven studio albums to her credit, and was the only woman on a 2006 Rolling Stone list naming the “new Guitar Gods.” Lupi and King found out they were neighbors, and continued to forge a friendship while looking for new ways to continue to collaborate. Then, in August last year, Kaki woke up one morning to find her three-year-old daughter, Cooper, bleeding from the mouth with a dime-size lesion on her tongue. Their pediatrician sent them to the ER.

After a blood test, she was diagnosed with a condition called Idiopathic Thrombocytopenic Purpura, or ITP, an autoimmune disease wherein the body attacks platelets which are a crucial part of blood clotting. It meant Cooper would get spontaneous bruises and burst blood vessels called petechiae all over her body. Kaki described the following weeks as “a terrifying spree of platelet transfusions, courses of steroids, blood tests, and abject terror as we watched her platelet levels rise and fall.”

When Kaki told Giorgia what was happening, she wanted to help. So she turned to what she does best: visualizing data. Cooper’s doctors had instructed Kaki to watch her skin, so they collected notes on the number and intensity of the markings. Kaki also wrote down what activities the two did that day, what treatments Cooper had recently undergone, and her blood test numbers. Finally, Kaki recorded how she was feeling: her stress, her hopes, and her fears.

The final product is called Bruises: The Data We Don’t See. Complete with an accompanying score by Kaki that chronicles the first four months after Cooper’s diagnosis, Bruises is both an emotional record of a family’s journey with illness, and an experiment in empathetic data visualization. Folks caught up with Lupi to talk to her about her own emotional journey through creating it and how it embodies her data philosophies.

How did you and Kaki decide to do this collaboration together?

This summer when she told me something was wrong with Cooper, she sent some medical records and lab results and I was trying to visualize them to see if there were patterns that I could identify about Cooper’s health. But the more we talked, the more we realized that since the condition wasn’t going away anytime soon, maybe it was smarter to do something to help Kaki understand what was going on with her too. After a few months of collection, we decided to try to get a broader message out about her personal journey. Kaki thought “we need to make something beautiful out of this shitty period.”

Were you nervous at any point while working with this sensitive story in such an intimate way?

“We need to make something beautiful out of this period.”

I was nervous when we decided to make the project public because for Kaki, it was very personal and the idea of sharing her story made her nervous. It was a lot of responsibility to share her story. But we’ve already received hundreds of messages from parents and caregivers and just human beings that were really moved. So the doubts and nervousness dissipated. We realized we’re on to something. It’s no scientific breakthrough but it can help us define what data is in the first place.

Musician Kaki King. Her son Cooper’s diagnosis of ITP was what directly inspired Bruises.

How should we be thinking about what data is in the first place?

I’m an evangelist for softer, humanist data. What I always say is that for data to be reflective and representative of our human nature and our stories,  we need to instill empathy and imperfection into how we interpret, collect, and visualize the data.  If I’d represented this in the digital standard, it would not have evoked the same kind of empathy. Data viz is usually so cold. But it is capable of stimulating us on both the cognitive and empathic level. The idea of this piece was to make it as an art piece to help people relate to the idea of the disease as something less clinical, more real, and less scary.

Beyond expanding the definition of data, what were the goals of this project for you and Kaki in relation to Cooper’s illness?

Data viz is usually so cold. But it is capable of stimulating us on both the cognitive and empathic level.

We did this to try to find ways to use artistic experimentation to help the healing journey and to frame the way we see illnesses. There are many ways to look at a pathology. Charts are important. Medical histories are important. But the information about the personal journey can be valuable to a doctor as well, to be able to suggest a therapy that’s not just based on hard numbers but also what is going on in the life of the family.

Not everyone with illness should collect data, but it can be a process of gaining control over what’s happening. It can be hard to tell the story of the previous months with accuracy. That can be easier if you regularly stop to acknowledge what is happening and observe the details. Kaki says the data collection made her feel more in control to see trends in terms of her mood. She was also able to appreciate the happy moments in these four months because of how much she was keeping track of the difficult times but also because she can remember the joyful moments more also. In the end, Kaki said the experience was healing.

A photo of Cooper with her baby brother.

What was your emotional journey like through making this? Did you find that you understood the experience more empathetically after working with the data?

I had a shared spreadsheet with Kaki, and would read as she filled it in with her data, writing about how she felt. It was very heavy. At times, I really felt overwhelmed to the point that I sometimes thought, “I can’t handle this.” I also worried about Kaki. I didn’t know at the time for sure if the data collection process for her would be healing or torture.

As I started to draw, tears came out of my eyes while I traced the lines. It’s a very physical piece.

As I started to draw, tears came out of my eyes while I traced the lines. It’s a very physical piece. You can see the bruises and the pink dots as they are on her body. It’s already a visual disease. But abstracting Cooper’s health into the data made things easier for me. There’s a bit of emotional abstraction that working with data can help you achieve. It’s useful to help people relate because it’s a period of time, of anxiety and ups and downs, and not just this one specific story.

The most stressful times for Kaki were the times before Cooper’s blood tests. They were looking for her numbers of platelets. And those numbers contained the hard truth about Cooper’s health. Sometimes she was looking good, with less bruises, but the numbers didn’t necessarily correspond. The result numbers really determined her emotions and anxiety. That’s why the timeline is not linear but grouped by the days between the tests.

What did you learn from observing the family’s experience with illness?

It was a particularly hard year for me because my dad passed away suddenly in January. I’m an only child, and my mom is alone now. So it’s been a rough stretch and I felt an empathic connection with Kaki. That said, I also don’t have kids. What I learned about was what it really means to be a caregiver. Kaki often needed to maintain a happy face and be a sane parent even when her fear level was really high.  They also just had another newborn in August, weeks before the diagnosis. She needed to be a functional parent and partner. I learned from her as a person, seeing her be able to re-establish normality within uncertainty and get her stress levels under control in just four months. She was able to say, ok, this isn’t normal, but it’s going to be our normal for a while.

 

Health & Fitness Immune & Autoimmune Diseases

Game Changer

After surviving 10 heart attacks, lupus, and a leg amputation, kayaker Brandon Holiday aims to inspire a whole new generation of disabled athletes.

It’s a cool crisp day at Cooper River Park in Pennsauken, New Jersey, and Brandon Holiday is teaching a group of disabled adults the basics of kayaking. With his service dog, a yellow Lab named Dyson, sitting near him on the dock, Holiday shows the group how to steady the kayak while getting in and out, and then demonstrates basic paddle strokes.

A lifelong athlete, Holiday grew up in Maplewood, New Jersey and spent his childhood and teen years playing various sports including tennis, baseball and participating in martial arts. Yet he also remembers how he spent much of his childhood fighting high fevers and experiencing unrelenting joint pain.

“My doctor wasn’t sure what was causing my symptoms, but suspected it was a form of juvenile arthritis,” says Holiday, 45. “It wasn’t until I was 21, and in college, that I was finally diagnosed with Systemic Lupus, Primary Addison’s and a rare blood-clotting condition called Antiphosolipid Syndrome.”

Brandon Holiday mentors children and adults with cognitive and disabling chronic conditions.

An autoimmune disease, lupus affect the joints, skin, kidneys, blood cells, brain, heart and lungs. While there’s no cure for the condition, there are treatments available to help control symptoms and minimize flare-ups.

Determined not to let his condition define him, or deter him from pursing his dream of becoming a police officer, Holiday finished college and joined the Salisbury, Maryland police department in 1996. He served on the police force for four years until he sustained an injury in the line of duty that exacerbated his lupus symptoms and caused severe blood clots.

“I loved police work but dealing with complications from lupus made it impossible for me to continue serving on the force,” Holiday says. “A scratch on my leg would turn into an open wound and I had to be constantly on the lookout for infections.”

According to the Lupus Foundation of America, infections pose a big risk for people with lupus and aren’t to be taken lightly, since they pose the second most common cause of illness and death for those with the disease.

With a heavy heart, Holiday left the police force and went on to work different jobs, but continued to have more medical issues due to the lupus.

“I worked as an underwriter and then as a private investigator for ten years,” Holiday says. “I decided to go back to school to become a Physician’s Assistant and was accepted into a program, but while finishing my last pre-requisite class I got a blood clot in my leg which put me in the hospital.”

Suddenly Holiday found himself facing one of the greatest challenges of his life. After four months in the hospital battling blood clots, and undergoing wound care and hyperbaric chamber treatments, doctors told Holiday they needed to amputate his left leg below the knee.

“I had always been so active that the thought of losing a leg, as well as my mobility, sent me into a downward spiral of depression,” Holidays says. “At the time, I wished I could have talked with another athlete who had gone through amputation, or had known of a program that could have helped me learn how to readjust.”

“I don’t know anyone who wouldn’t become depressed after spending months in the hospital and having a limb amputated…”

Rather than offering suggestions on coping with his new reality of being wheelchair-bound, Holiday was frustrated that his doctors believed he was manic depressive.

“I don’t know anyone who wouldn’t become depressed after spending months in the hospital and having a limb amputated,” Holiday says. “I wasn’t sure if I would ever walk again, much less compete in sports.”

After being released from the hospital, Holiday began doing online research to determine if there was a way he someday might be able to participate in athletics again. He knew keeping active was not only key to easing his depression, but that low-impact exercise also offered long-lasting benefits to people with lupus.

Holiday learned about the Challenged Athletes Foundation (CAF), a San Diego, Calif., non-profit that supports and provides opportunities to people with physical challenges, in order for them to lead active lifestyles and compete in athletic events. A year after his surgery, he was awarded a grant by CAF to travel and attend their annual Extremity Games, an extreme sports event for people with disabilities.

“It was an empowering experience to see other athletes with amputations, spinal cord injuries and other disabilities excelling in sports such as surfing, rock climbing and riding motocross,” Holidays says. “It made me realize that if they could still compete in athletics, I could also regain my competitive nature.”

“It was an empowering experience to see other athletes with amputations, spinal cord injuries and other disabilities excelling in sports…”

Holiday took up the sport of kayaking and found he enjoyed the peacefulness of being out on the open water, and that training to compete in national championships gave him a purpose he desperately needed.

As Holiday regained his strength and was fitted with a prosthesis, he began to cross-train in other sports, and became involved with mentoring other adults with disabilities through the national group, Athletes with Disabilities Network.

“There’s nothing like seeing the smile of a disabled athlete who has mastered a sport they didn’t think was possible,” Holiday says. “Coaching and mentoring other athletes keeps me healthy and happy.”

Holiday so enjoyed his work with other disabled athletes that in 2016 he launched a Northeast chapter of Athletes with Disabilities in Cherry Hill, New Jersey where he serves as Executive Director.

Just because you’ve got a condition doesn’t mean you can’t find humor in it.

“Our chapter is comprised of many military veterans from Vietnam and Desert Storm including double amputees and those with impaired vision,” Holiday says. “We also have a great youth program with area Children’s hospitals and local Veterans Hospitals spanning from Philadelphia to the Bronx, to provide Paralympic sports programs.”

Today, Holiday is a member of the National Paracanoe Team and hopes to secure a spot on team USA for the 2020 Paralympics being held in Tokyo. Over the past 10 years he has won a bronze medal in martial arts, a silver medal in recreational kayaking, and seven gold medals in kayaking at the U.S. Sprint Nationals Championships in 2014, 2015 and this past summer.

“There’s nothing like seeing the smile of a disabled athlete who has mastered a sport they didn’t think was possible…”

Despite having suffered 10 heart attacks as the result of pulmonary embolisms, caused by blood clots, stasis wounds to his legs, and skin grafts, Holiday pushes himself to train 20 to 30 hours each week with a regimen that includes both weights and cardio. He says that being inactive actually makes his symptoms worse.

“I’ve learned to manage my condition through a combination of medication Benlysta (the first FDA-approved treatment for lupus in over 50 years) which has made a huge difference and supplements,” says Holiday who also receives assistance from his service dog and constant companion, Dyson.

“I got Dyson after my last heart attack five years ago,” Holidays says. “I was afraid of being somewhere and passing out. Dyson is trained to get help in the event I’m incapacitated and I have a special K-9 phone that he can press with his paw to call 911.”

In addition to preventing his owner from sleepwalking and helping Holiday if he falls, Dyson has also proven to be a popular fixture at sporting events.

“Dyson isn’t just my sidekick, he’s a real celebrity,” Holidays says with a laugh. “He’s always there and willing to take pictures at the podium with race winners.”

Essays Immune & Autoimmune Diseases

What Hashimoto’s Taught Me About Prejudice and True Beauty

My mother's Hashimoto's diagnosis made me realize how much I took her for granted, and how much I dismissed her for being overweight.

When I think of my mother, I think of uncooked chicken on a cutting board. I think of her on her hands and knees on the floor cleaning our kitchen tiles. I think of her plump, pale white skin, and the heavy sound of her breathing as she trundles up the stairs. And most shamefully, I think of the single word I used for most of my life to describe her, and hate myself for it: fat.

My family, we’re Albanian Muslims, which means that not only do we like to eat, it’s our main past time. When we have parties or family gatherings, we can’t start doling out the booze, so we just start serving more food. Consequently, we were a tribe of eaters, ministered to by my Mother, who seemed to always be hunched over the stove growing up, cooking our favorite meals for us day or night: a lifetime spent frying or baking or sautéing or reheating food for the seven people she loved.

But never for herself. As long as I can remember, I’ve seen her counting calories, sometimes for months at a time. It didn’t matter; she was always shopping for looser pants or looser shirts. Her daily regimen of chores would have reduced other guys’ moms to skeletons: she was always lifting, always cleaning, always killing herself for a house we couldn’t afford, smack dab in the middle of New City, a small but wealthy suburb in New York, with its three floors and disastrous mortgage.

Her daily regimen of chores would have reduced other guys’ moms to skeletons: she was always lifting, always cleaning…

Eventually, my father lost his business, and so my mother lost her home. We moved out, into two cramped, Lodi, New Jersey apartments that were hastily renovated, but still far smaller than where we’d previously lived. And without a chandelier to Windex, or floors to constantly keep scrubbed, my mother just gained more weight.

Still self-conscious of her weight gain, my mother asked us to blur photos of her for inclusion in this piece.

She slowed down. She’d always hated going to the mall, which she associated with our toy aisle temper tantrums, and the humiliating experience of having to buy new clothes.  Now, though, just walking to and from the car was a chore. Around the house, she’d get dizzy spells when she stood up too quickly. She’d even start to breathe heavily when doing simple things, like pounding chicken to grill for my brother, who insisted the protein was vital to his weightlifting “gains” process.

She was selfless. No matter how much her weight made it harder for her, she was selfless. She drove us to and from school, cooked for us, washed all our clothes, dealt with all our shit. She cleaned toilets, and bid on construction jobs for my father, who–after failing another business venture and plunging our family into debt again–seemed to do nothing but nap all day. But it was she who was tired. Yet she did it all, quietly, never appreciated.

The excessive fatigue and weight gain finally forced her to see a specialist. But it tooks years to get a diagnosis. She’d see a doctor. They’d put her on medicine. It wouldn’t work. They’d try another a month later. That wouldn’t work. They’d try another medicine. Finally, some results. But then the insurance would run out. She’d have to see another doctor. Rinse repeat.

It took about 11 years, give or take, before they finally diagnosed my mother with Hashimoto’s disease

It took about 11 years, give or take, before they finally diagnosed my mother with Hashimoto’s disease, an autoimmune disorder that gradually destroys the thyroid, eventually leading to weight gain and fatigue. It turned out that, with the right meds, her younger, better years could have been saved, but better late than never, right?

My mother on her wedding day.

Sometimes, I look at these pictures of my mother when she was still young and I cry. She looked like she’d been carved from marble: beautiful, tall. She somehow managed to make the outdated hairstyles of the early 80s look good. Her skin was clear, her smile was warm and vulnerable hovering above a straight posture that ran a line down to her feet.

Then I think of her at the height of her obesity. Her face, full and tired. Visibly shorter, as if she’d collapsed in on herself. And when I compare her to her past self this way, I ask myself: was it really the Hashimoto’s that made her sick? Or was it my family, which ran her ragged, and sapped the energy out of her, and never appreciated her?

It’s at these moments that she seems, to me, to be most tragic and mysterious. Do I really know this woman, who gave up a computer science scholarship to Princeton to marry my father at 17? What lies in the soul of this woman who would thrill me as a child when I heard her tip-toe through the house at night, softly singing lyrics from the Quran?

How could I have taken her for granted for so many years? How could I have dismissed her as fat?

She was, and is, so much more.

Essays 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.

Essays Immune & Autoimmune Diseases

When Lupus Happens To You

In today's celebrity culture, it's all too common to compare yourself to the glitterati... but that cuts both ways when you have an autoimmune disease.

The first time I’d ever heard of lupus was during the second season of America’s Next Top Model.

America’s Next Top Model contestant Mercedes Scelba-Shorte has lupus.

It was the earlier days of reality television, so the show was still working on finding its legs when it came to typecasting for ratings. You know—the single mother who misses her child, the tough girl from the streets just trying to make it, the mean girl battling her own insecurity, all battling it out for the title of “top model” and a contract with a modeling agency that could make it true.

So when contestant Mercedes Yvette Scelba-Shorte was given the token sob story on an episode as she revealed her lupus diagnosis, it felt like a weird and unusual angle.

To be honest, I don’t even remember how it came up—just that I felt confused on so many levels. What is lupus? I thought, making a mental note to look it up (sometime). Skeptically, I wondered: How could someone that looks so well claim to be so sick? After all, they offered no additional information, no discussion about its long-term effects.

In this vacuum, I asked cynically, is she even really that ill? Or is she just being used as a show pony?

Back then, the tears shed over this unheard of illness seemed to me like a cheap, sensationalist ratings trick.


Invisible illnesses are cloaked in skepticism and shame.

There’s just no way to help a well person understand what it’s like to ache from the insides of your bones or the center of your joints. In the Chinese language Fuzhouhua, there’s a word for it—which I suspect stems from the higher occurrence of lupus and its symptoms in those of Chinese, as well as African, Hispanic, and Caribbean descent—but not in English. It literally means a sore aching from the marrow of your bones out.

Lack of language aside, it’s hard to talk about a disease others can’t see and you yourself don’t always feel. People tend to disbelieve discomfort they cannot see, and since no one has a gauge installed that can tell you if your threshold for pain is lower than average, their doubt makes you doubt yourself. Rather than be viewed as a complainer, or as someone who is using their illness as an excuse, you push through the pain, and try to pretend there’s nothing wrong.

It’s hard to talk about a disease others can’t see and you yourself don’t always feel.

Even if you are able to bring yourself to share your diagnosis, there’s always that bated-breath moment: how will they react? Perhaps they simply won’t, offering nothing but a blank stare … in which case, it’s now up to you to educate them about lupus. Or maybe they’ll brush it off dismissively, a reaction that hurts even more. Another possibility: the person you tell about your lupus reacts with drama and tears, in which case, you’re the one comforting someone about your own disease.

There are no good outcomes. And so, with options this poor, we stay not only invisible, but silent.


I knew Seal best as the singer of “Kiss From a Rose” … and the husband to supermodel Heidi Klum.

As a shallow teenager belting it out in the shower (“My power, my pleasure, my pain … babyyyyy”) I never gave too much thought to the lyrics, and certainly not enough to analyze what they referred to. But I did give fleeting thought to Seal’s appearance, enough to question his union to one of the most objectively lovely women on Earth.

Seal and then-wife Heidi Klum. Seal’s distinctive facial scars are the result of lupus.

Klum was—and still is—a legend in the fashion industry, the gold standard of sublime aestheticism. And Seal is … well, scarred. Damaged. His lumpy, scaly face frightened me. While thumbing through glossy tabloids, I would avert my eyes to his gorgeous then-wife rather than look closely at his disfigurement, and as I did so, I would wonder at the inequality of their pairing. How did he score her with a face like that?

Then I’d turn the page, never thinking for a second longer about just why Seal’s face looked the way it did.

Years later, I learned it was because of discoid lupus erythematosus.


I couldn’t understand why I was getting so many strange rashes.

The first time it happened was at a Long Island beach right before prom; I’d wanted to get a tan that’d make my silver dress shine brighter. The second was years later, on a cruise to the Caribbean. It surfaced again in Hawaii after just a single beach day, and once more in Los Cabos on a group trip. After this, I swore off traveling and decided I just didn’t like beaches.

I blamed sand fleas, jellyfish stings, and sunscreen. During my 12-city trip to China, I blamed the oozing blisters on my hands and feet on the  pollutants in the water.

Eventually, I saw water as the only common factor in all of these reactions, and became convinced I was allergic to something mysterious found in foreign bodies of it. And because the rashes were getting progressively worse and my dermatologist, unable to see them at their blistering height, attributed it to generalized eczema, I sought an allergist to help me pinpoint exactly what that unknown factor was.

“Actually, I think you may just be photosensitive, especially in hot climates … but let’s just test you for lupus, in case,” he said. He quickly added, reassuringly: “I doubt you have it, though; you have so few of the red flags.”

When the test came back positive, he was still confident that it was a false one. “It happens all the time.”

I put it out of my mind.


When Selena Gomez canceled 12 tour dates in 2013 after a holiday “concert meltdown,” many people assumed it was either because of her breakup with Justin Bieber or that the wholesome star had fallen prey to substance abuse. After Britney Spears’s legendary breakdown and Lindsay Lohan’s much-publicized exploits, many were also quick to speculate that she was cracking up under the pressures of fame.

In a person so young and vibrant, taking time off to “focus on herself” sounds like a PR cop-out. In celebrity-speak, “me-time” means post-breakup sulking; “taking care of one’s health” has become a nice way to say “rehab.” So can you fault the judging public for assuming the worst?

Pop sensation Selena Gomez has lupus.

Of course, “the worst” is also another matter of context. After years of build-up, the rumor mill forced Gomez to out the real cause of her anxiety, fatigue, and depression: systemic lupus erythematosus.

In December 2015, nearly two years later, she finally opened up about it to Billboard, going on the record stating, “I was diagnosed with lupus, and I’ve been through chemotherapy. That’s what my break was really about. I could’ve had a stroke … I wanted so badly to say, ‘You guys have no idea. You’re assholes.’”


I cried when my rheumatologist confirmed that my allergist’s false positive was, in fact, not false at all.

Typically tough on myself and on others, tears always seemed like a luxury I couldn’t afford. But on that spring day, I let the grief wash over me as I sat in my car and mourned.

I had spent the previous few years reclaiming my health and body, losing 40 pounds and discovering an addiction to endorphins. I was doing power yoga in 100-degree studios, kickboxing on heavy bags, running miles for the feel of the wind in my face, and swinging around kettlebells like nobody’s business. I was leaner, stronger, and more able-bodied than I’d ever been in my life, and goddamnit, I was proud of myself.

But with this diagnosis, this lifestyle might be one I’d have to give up. Muscle inflammation, joint pain, and stiffness are the biggest harbingers of a lupus flare, and can come on suddenly. I’d read stories that chilled me to my aching bones of sufferers who, overnight, found themselves unable to get themselves out of bed anymore. Permanently.

And I, Su-Jit Lin, have lupus too!

What’s more, with this diagnosis, my whole career had an expiration date, too. As a writer, I need dexterity in my fingers and in my mind. But headaches, dizziness, brain fog, and difficulty expressing thoughts can also be part of a flare. And so I wept for the eventual limitations that would take away the things I loved to do—the things that made me me.

I researched prednisone, the most commonly prescribed medication for controlling lupus inflammation, and was devastated to see that weight gain was one of the biggest ones. By accepting medication, I would be undoing all of the progress I had made losing weight over the last few years … and that was without the extreme fatigue, weakness, and insomnia that would now be conspiring to keep me from the gym.

I shed tears for my vanity. Unlike some women, I’d always loved my hair, with its unusually wavy body and healthy gleam of rich, blue-black tones. Now I had to resign myself to saying good-bye to it; it had already started sporadically falling out in clumps.

Lupus is a terrorist. Everything’s a target. All is fair game.

I’d been blessed with clear skin, as well. Should the dreaded mala rash spread its wings across my cheeks, was I to bid that farewell, too?

Yet in many ways, these are the smallest symptoms.

While no one really knows what causes it, the simple explanation of systemic lupus erythematosus is that your body basically starts attacking itself. Called “The Great Imitator,” its weapons are wild cards, and the war it wages is a guerilla one.

So without warning, one day, my kidneys could suddenly become inflamed to the point that they stop functioning. Same with my heart, which is now more vulnerable to cardiac arrest and arterial disease. Thanks to lupus, I have an increased risk of stroke, bleeding, and blood clotting, as well as a greater susceptibility to cancer, infections of all kinds, and bone tissue death.

Lupus is a terrorist. Everything’s a target. All is fair game.


Legendary writer Flannery O’Connor died of complications from lupus at the age of 39 in 1964. Howie D of the Backstreet Boys lost his sister to the disease at age 38. Both 32 at the time of their passing, actress Inday Ba and hip-hop producer James “J. Dilla” Yancy fell victims to lupus, too. So did journalist Charles Kuralt in 1997, and Ray Walston in 2001.

Paula Abdul’s career was nearly destroyed as her lupus- and reflex sympathetic dystrophy-spurred erratic behavior made her a walking joke. Nick Cannon, like MLB player Tim Raines, experienced kidney failure, plus life-threatening clots in his lungs from lupus nephritis. Toni Braxton has also been hospitalized for undetailed complications. Meanwhile, Kristen Johnson and Maurissa Tancharoen both had to put their careers on hold to undergo chemotherapy to treat their lupus.

And yet, our living stars all continue to persevere as the internal, intangible battle between mind and matter wages on.

Some days, they’re inspiring and a message of hope. Other days, they’re frustrating as they perpetuate the impression that it’s just not that big a deal.

It’s impossible to tell which feeling is right.


I had meant to write this as an empowerment piece. After all, it’s been five years since my diagnosis, and—thanks to both my foundation of healthy, active living and strength of will to power through pain—I’ve yet to require a regular regimen of medication.

Sure, I still lose fistfuls of hair to hot showers and still get mottled red rashes from a single day on the beach. Yes, I deal with random inflammation in my joints and soft tissue, otherwise unexplainable infections, and straight days of radiating headaches. And I’m sometimes sidelined by a fatigue so deep that even typing feels like lifting bricks under gray skies of sadness, my brain draped in a fog of confusion and frustration. “Nevertheless, she persisted.”

Sometimes I’m sidelined by a fatigue so deep that even typing feels like lifting bricks under gray skies of sadness…

But being able to stay medication-free? Well, that’s only because I’m lucky. So far, lupus hasn’t reared its head in its ugliest form yet, which is why that story of empowerment can’t be told at this time … because that story isn’t over. As a hibernating disease that flares up in a temper when woken, anything can still happen.

However, what’s done with is my ignorance about it. The insensitive perspective I once held. The “out of sight, out of mind” approach I, like so many others, have when it comes to invisible illnesses. All of that is no more.

What’s gone is the crying, the grieving. Instead, I thank my joints every day for allowing me to get out of bed and love my muscles for everything they can still do. I cherish my brain on the days my thoughts flow effortlessly, and marvel at the fingers that can put them on paper.

So although lupus is a self-destructive disease, the first part of myself it took down was my apathy: the ability to choose not see this ghost of a malady when so many highly visible people already had it. Because when it happens to you … well, that changes things, now doesn’t it?

Chronic Illness Health & Fitness Immune & Autoimmune Diseases

Feminism, Weight Lifting, and Crohn’s Disease

Two years ago, Kate Montgomery was ashamed of her looks and could barely get out of bed. Now, she's the strongest and sexiest badass at the gym.

Wearing a t-shirt that says Wild Feminist, a massive smile, and a tiny silver dumbbell around her neck proclaiming “Me vs Me,” Kate Montgomery is no one’s picture of chronic illness.

The 34-year old was diagnosed with Crohn’s Disease at 22. The necklace is a description of the power play between herself and her body; a fight she’s come close to losing multiple times.

Kate has spent much  of the last decade in the  hospital, suffering through dangerous infections, four surgeries, and dangerous weight loss.

Up until May 2015, she weighed around 92 pounds. Unable to eat, she was fed through a tube directly into her chest. She couldn’t get out of bed unassisted.

The Kate of today is a different story.

Kate Montgomery.

Two years ago, her doctors made a devastating decision that probably saved her life: her large intestine needed to be removed.

Having already experienced a temporary ileostomy–where her bowel was rerouted and attached to her stomach wall so that waste emptied into a colostomy bag–Kate was shattered by the news.

While the procedure removed five feet of intestine from her body, it essentially removed her disease. But she says it also shredded her self-esteem.

“I thought no one would ever be attracted to me again when they found out about it. I was ashamed of it, it just mortified me. I would cry just thinking about it.”

But now, Kate says she’s the healthiest she’s ever been, and the ileostomy no longer upsets her as it once did.

“It’s strange to think about feeling bad about it, because I’ve done a huge amount of work on being okay with me, and I don’t really care anymore. I’ll tell people and explain it.”

The years she spent battling the disease have made her strong both physically and mentally. Under advice from her physician, she started to weight train in order to fix her bone density.

“The medication I was on affected my bone density, and overall I was left very weak,” she says. I’d never weight trained before so I didn’t know what I was doing! But I love it now.”

“Regularly pushing myself in the gym doesn’t feel that hard, really. I know how mentally strong I am from surviving months in hospital and years of being bedridden, and constant pain. After my last surgery they took away my epidural really early but hadn’t added extra pain relief to replace it, so I could feel the full force of having been cut open days before. I had to get through about eight hours counting in 5 second intervals, like get through this five seconds, then the next five. Knowing I survived that means I’m already confident I can handle anything in the gym. Nothing will ever will ever be worse than that day.”

Now, Kate says she keeps hitting new Personal Bests, seemingly every week.

“My goal was to deadlift 100kg (220 pounds), which I’ve just done!” she says. “Next up is double my weight, which is about 126kg (227lb). Considering at one point I couldn’t lift myself out of bed, it’s amazing to be able to push myself now.” 

Kate says the strength that comes from weight training comes first, but being able to look in the mirror and like what she sees is also hugely important.  

Why should I have to feel like this illness that has left me so scarred–figuratively and literally–makes me any less beautiful or worthy than anyone else?

“Having positive self-image is constant work. I’m very lucky in that I became well enough to work out and lifting weights has changed my body, in terms of my strength and my shape,” she says. “But I definitely don’t look like a Victoria’s Secret model – I have broad shoulders, strong arms and narrow hips, and I’ve always been self-conscious of that. It’s just been a process of deciding to not feel bad about that anymore and own how I look and constantly correcting my thoughts when I feel bad or say mean things to myself.”

“I got sick of being ashamed. Sick of feeling like there was something wrong with how I looked. I decided that needed to change. Last year, I just decided to stop feeling like that. It’s not an overnight process, but I’ve worked at it every day. Because why should I have to feel like this illness that has left me so scarred – figuratively and literally – makes me any less beautiful or worthy than anyone else?”

“I got sick of being ashamed. Sick of feeling like there was something wrong with how I looked.”

Kate says being a feminist also played a big part in making these changes.

“Part of feminism is being body-positive, about women of all shapes and sizes. And it’s hard to be an advocate for that if you’re really not positive about your own,” she says. “One of the biggest blessings of being sick and recovering is not giving a fuck how much space my body takes up anymore. I used to feel bad about being taller and broader than most of my friends; women are taught by society to take up as little space as possible. After you’ve literally taken up as little space as your skeleton allows, taking up more space feels defiant. I love it. It’s a blessing to learn you’re entitled to take up exactly as much space as you need to in this world, with your size, or your voice.”

Kate’s going back to school this year to study psychology. She wants to be able to share the knowledge she’s gained from being sick, and to put that into practice helping others with chronic illness.

“I think my experience will make me better able to help and relate to people,” she says.

One of the biggest blessings of being sick and recovering is not giving a $%@! how much space my body takes up anymore.

“Chronic illness isn’t a normal part of life and I believe everyone who has it would benefit from professional help to cope with it, mentally. My therapist has changed my life in terms of my ability to accept and cope with what Crohn’s has thrown at me, from the day to day stuff, to the big things like hospital and surgery. Having the temporary ileostomy previously meant I could directly compare how shattered that left me, with how well I’ve coped now, and the major difference is the therapy I’ve had. I’ve done all the work, and I’ve worked damn hard. I want to be able to do that for other people.”

Kate says she’s now in a ‘weird limbo’ where she’s not really sick anymore. But she constantly reminds herself how hard she’s worked to earn her health.

“I don’t have pain anymore, so I feel weird sometimes saying I have a chronic illness or putting myself in with people who are still grinding through their days, but I’m also not well, and I have to be much more careful about my health than ‘normal people’. But I feel guilty talking to other sick people sometimes, because I’m so much better. I have to remind myself that I deserve to enjoy being better, that I’ve earned it, and that I’ve sacrificed and lost a lot.

I’m allowed to just be grateful and happy that I’m here now.”

Chronic Pain Immune & Autoimmune Diseases Profiles

“There Is More In You”

Even lupus couldn't stop Danae Lee from pursuing a once-in-a-lifetime wilderness adventure.

Spending two and a half days alone in the wild heart of New Zealand might be a daunting prospect for most people, but for Danae Lee, who has Systemic Lupus Erythematosus, Raynaud Syndrome, and arthritis, it was the opportunity of a lifetime.

The thirty-four year old, who was diagnosed with lupus in 2009, has spent nearly her whole life wanting to participate in New Zealand’s most prestigious outdoor adventure program, Outward Bound, which tasks participants to have real, challenging adventures in the heart of the wilderness. But when she got sick, she was certain she’d never get the chance.

“I just figured that was it, I wouldn’t get to go,” she says. But then she found out about Aspire, Outward Bound’s course designed specifically for people who face limitations like Danae’s.

Danae Lee and her dog, Scrappy.

Danae Lee and her dog, Novak.

The Lupus Foundation of America estimates around 1.5 million Americans have a form of the disease, and at least five million people worldwide. In New Zealand, it affects 1 in 900 people, with the major symptoms being swollen and achy joints, extreme fatigue, rashes, fever and chest pain.

Danae’s Twitter name is Fuck Lupus, a handle which aptly describes her own attitude to the disease. Despite suffering a massive cardiac arrest and slipping into a week-long coma in 2011, she has now almost completed a bachelor’s degree in environmental studies, surfs, teaches, speaks fluent Te Reo (the language of the indigenous Māori people of New Zealand). Throwing herself into Outward Bound in September this year was just icing on the cake. 

“Having a very-near death experience has shaped my view of the world,” she says. “The freedom and ability to do anything at all is a taonga (treasure) to me.”

Danae’s Twitter name is Fuck Lupus, a handle which aptly describes her own attitude to the disease.

The cardiac arrest came following months of Lupus-related complications. An infection spread through her body like wildfire, shutting down major organs one by one. After she fell into a coma, Danae’s family were told to prepare themselves for the worst.

“They were just watching me slip away. But after a week, I suddenly started fighting back, and I woke up. I had to do a month of dialysis because the Lupus had attacked my kidneys, and I had to learn to walk again. It’s a huge thing to recover from – I think I’m still recovering, actually.”

In July this year, Danae applied for a scholarship to attend Aspire. She was successful, but needed more support to cover the whole cost. So her younger sister Nicole set about fundraising online.

“Danae is such an inspiration to me,” says Nicole. “ She has not had an easy ride but she has some pretty amazing determination, and hasn’t let her illness knock her spirit.

The Outward Bound program tests participants with adventures in the New Zealand wilderness.

The Outward Bound program tests participants with adventures in the New Zealand wilderness.

“My sister loves the outdoors, but Lupus has meant she hasn’t been able to enjoy it the way she used to. She faces pain and fatigue every day. Aspire was the chance of a lifetime for her to reconnect with that part of her life in a safe environment, with peers who have faced similar challenges.”

The campaign raised close to $2000, and within a few short weeks, Danae was on her way.

Outward Bound takes place in New Zealand’s picturesque Marlborough Sounds, several hundred miles from Danae’s home in Whakatāne.

“Outward Bound requires a total shift in mindset and lifestyle right from day one,” she says. “All forms of technology, communication, and media – including books! – are removed before you get on the boat to Anakiwa.”

“Every minute of every day is accounted for. Every morning started with 20 minutes of physical training, followed by a two mile run or walk, then a frosty dip in the sea before breakfast. The daily activities are not revealed until the moment before they begin, so you never know what’s coming next.”

Even if you think you can’t: There is more in you.

Her ‘Watch,’ Danae says–the name for each cohort of Aspire participants–would spend eight days experiencing sea kayaking, rock climbing, high ropes, rowing, sailing, and the famous “solo”: almost three days spent alone at an undisclosed location in the New Zealand wilderness.  

“I love the outdoors and was happy to go along with anything! I really enjoyed my solo time in the bush. I crawled about two meters from the shelter I’d built, and curled up in my sleeping bag inside this dead tree trunk. After a while, birds started coming around me: piwakawaka, tui, robins. I had to manage my food ration of a carrot, a biscuit, an apple and some scroggin (trail mix) —  and I actually had the apple left at the end!”

When she's not climbing mountains and exploring forests, Lee loves to surf.

When she’s not climbing mountains and exploring forests, Lee loves to surf.

But, she goes on to say, one of the most important parts of Aspire is getting to know your teammates. Along with the outdoor activities, time is spent each day in group sessions focused on goal setting, team building, and sharing life experiences.

“The people on my course are some of the most amazing people I’ve ever met, and it was a privilege to be a part of our Aspire Shackleton 621 Watch,” she says. “We came from diverse backgrounds in terms of age, gender and health, but I shared so many things in common with many of them. To me this was probably one of the greatest aspects of the course; meeting people who have been through many of the same or similar struggles that I have, especially in terms of chronic illness.”

“I’m loathe to use the word ‘inspiring,’ but it was. It made me feel like; ‘We got this. We’re gonna be ok, even if we’re not ok, you know?”

Danae was determined to give everything a shot, even though she knew her body wouldn’t hold up for some of the activities.

Surfing is how I heal, have fun and keep fit.

“The rock climbing was frustrating for me,” she says. “I used to enjoy doing it when I was younger and would have breezed through it if it weren’t for my arthritis, which stopped me from reaching the top of the wall despite numerous attempts. The frustration of watching everyone else achieve this was an emotional low point for me personally. But it was made bearable and put into perspective by thoughtful debriefing processes with my watchmates and instructors. I’m pretty sure everyone on the course had similar moments, there were some real big struggles going on for everybody, so that solidarity was a useful crutch!”

She gives huge thanks to the Outward Bound team. “Our instructors were impeccably professional and well trained. They did their very best to provide a safe environment within an inherently risky one. I’d recommend this experience to anyone. Even if you think you can’t: There is more in you.”

Lee surveys Middle Earth, alone with her thoughts.

Lee surveys Middle Earth, alone with her thoughts.

Back at home in Whakatāne, Danae is in the final week of her degree, which she’s been working on since 2013, spends time with her family and her two dogs Novak and Ripley (“my best friends!”), and surfs whenever her health allows.

“Surfing is how I heal, have fun and keep fit. I’ve surfed since I was 15 and there have been extended periods where I’ve been unable to do it, so I make the most of going whenever I can.”

She also gets to use her language skills every day, as her region has the highest percentage of Te Reo speakers in New Zealand. “Nōku te waimarie,” she says. “I’m lucky!”