Flourishing in the face of autoimmunity

Autoimmune diseases can leave sufferers feeling alone and vulnerable. To our friends, we sound like strangers spitting out words they have never heard. We try to get someone, anyone, to understand that every day, we walk a tightrope made taut by modern medicine over a 10,000-foot drop to oblivion. If and when we fall, doctors cast us lifelines. Sometimes, we lose our grip. Sometimes, the lines break.

The rarer the condition, the more anxious and more depressed its leaves the afflicted. We visit doctor after doctor and wander the world in search of charlatans who have answers to the darkest of questions: Why me? What caused this? Did I do this to myself?

Seeing talented sports stars, actors, singers, and musicians flourish despite their conditions inspires those of us battling autoimmunity.

We have to remind ourselves daily that diagnosis is not the end. Most autoimmune diseases have been thoroughly studied. Though few, if any have cures, many have multiple treatment options. Most treatments are safer and more effective than they have ever been. And in the twenty-first century, many autoimmune patients live long, productive, even happy lives.

Staying on top of their game: sports stars with autoimmune diseases

Pro golfer Kristy McPherson was told by many doctors she would have to give up sports after being diagnosed with juvenile idiopathic arthritis at age 11. A rheumatologist at the Medical University of South Carolina told her that even with the disease, she could still do whatever she wanted.

Pro golfer Kristy McPherson refused to give up sports after her doctors diagnosed her with juvenile rheumatoid arthritis and told her she would never be able to run or jump competitively again. [Chris McGrath | Getty Images]

“All I needed was that one doctor to tell me that,” McPherson said. “That’s when I went back to playing sports.”

Months after becoming the world’s top tennis player, Caroline Wozniacki was diagnosed with rheumatoid arthritis.

She explained: “You start asking yourself questions: What does this mean? Does it mean I can’t get in as great of shape as I was before?”

Though she initially struggled, she bounced back to win the 2018 China Open.

“[Wining in Being] meant so much to me,” Wozniacki added. “It also gave me the belief that nothing is going to set me back. I’m going to work with this and this is how it is, and I can do anything.”

Both McPherson and Wozniacki now speak with young people about living with the rheumatoid arthritis.

Having an autoimmune disease doesn’t mean you can’t be beautiful

Kim Kardashian’s makeup-free selfies have encouraged many others to acknowledge their psoriasis and helped me feel better about flare-ups on my face.

“The disease can cross all socioeconomic lines,” Randy Beranek, CEO of the National Psoriasis Foundation, told The Atlantic. “If someone as famous and visible as Kim Kardashian can have it, it doesn’t make your disease feel so isolating.”

Last December, Kardashian even polled her fans on Twitter about effective medications.

Celebrated singers and musicians have autoimmune diseases

Actress and pop singer Selena Gomez a few years ago revealed she has lupus and in 2017 informed her fans on Instagram about her life-saving kidney transplant.

Few 24-year-olds probably understand what it’s like to have their bodies threaten their lives. To deal with the psychological pain, Gomez checked into Arizona’s Meadows rehab facility. She then faced backlash from fans and from media, who thought she was being treated for drugs or alcohol addiction.

Like Kardashian, revealing her condition to the world opened up mainstream and social media discussions about lupus: What is it? What does it mean for Gomez’s career and for others living with the disease?

Singer Toni Braxton also has refused to let lupus derail her career or her commitment to her family. One of the most decorated pop singers in American history, she has won seven Grammy Awards, nine Billboard Music Awards, seven American Music Awards, among numerous other accolades.

As a guitarist, I find Shawn Lane’s story most inspiring. Widely regarded as one of the greatest guitar players ever, Lane struggled since he was twelve with psoriatic arthritis. His condition not only caused itchy, painful rashes on his skin, but also stiffness in his joints, making it increasingly difficult to play his instruments.

Shawn Lane psoriatic arthritis guitar player
Guitar player Shawn Lane played his entire career in spite of stiffening joints and skin rashes from psoriatic arthritis. His playing and compositions continue to inspire guitarists even after his untimely death in 2003.

Worse, Lane developed Cushing’s syndrome from his long-term use of cortisone to treat his skin and joints. He had to stop playing guitar and died a few years later after developing breathing problems.

Nonetheless, as readers can find more about here, Shawn Lane lived as full of a life as possible, playing in spite of the pain, and producing some of the most beautiful instrumental music of the last thirty years.

Laurence Olivier and Maria Callas: living with and dying from dermatomyositis

As I mentioned here, heralded actor Laurence Olivier and legendary soprano Maria Callas both battled and eventually died from dermatomyositis. That never stopped either of them from prolific careers.

Olivier has been called the most definitive actor of the twentieth century. He lived to be 82, dominating the British stage and starring in more than fifty films.

Callas had a vocal range just below three octaves and is still one of the best known and influential opera singers of the twentieth century. Despite her disease affecting her voice in her later years, she still performed. Forty-plus years after her death, Callas’s name still sells albums.