“Taking up space, together.” Our mantra here at Cysters reflects a simple principle: No matter how difficult it gets, we will not allow ourselves to be diminished by the pain we experience or society’s perception of it. From that strength, we empower the people going through similar struggles.
Such principles are powerful in the hands of public figures. Celebrities tend to inspire admiration. Thus, when they speak of their experiences, their words have the power to travel even to far corners of the world. Celebrities that are open about their experiences with chronic illness contribute something valuable to their communities: Any audience that was previously ignorant to the struggle gains knowledge, and any audience that could empathise with their struggle sees themselves empowered.
“Kiss From The Rose” singer Seal has long had a complicated relationship with his prominent scars. The lesions were a result of the traumatising experience of contracting discoid lupus, a kind of autoimmune disease Seal first contracted as a teenager, and which causes inflammation and pain on the skin. Aside from causing pain and scarring, the disease also affected the singer’s scalp, resulting in hair loss.
For the past 29 years, Seal has also suffered from anxiety, which often causes debilitating panic attacks. However, in his interview with Yahoo Lifestyle, Seal explained that he tries not to let his conditions drag him down. While he was previously self-conscious about his scars, Seal has grown to accept his body and physical appearance. Art, too, has helped Seal process the pain of navigating difficult health issues. “My purpose is communication,” he says. He is grateful to be able to create music that touches people. Through art, he can universalise his adversity, allowing people, no matter their struggles, to take comfort in his strength.
Modern Family star Sarah Hyland was born with kidney dysplasia, a condition that causes the kidneys to grow cysts, which in turn inhibits the organs from properly doing their job of filtering out the body’s waste. Like many of the members of Cysters, Hyland also suffers from the debilitating reproductive health condition known as endometriosis. At the young age of 28, Hyland had already gone through two kidney transplants: one donated by her father, which her body rejected, and another from her younger brother.
Yet, despite the deep trauma of her difficult situation, Hyland bravely speaks out about her experiences, publicly discussing her history. In her interview with Self Magazine, Hyland explained that she strives to keep a lighthearted perspective on her transplants. At the end of the day, Hyland only aims to live a good life. She sings, pursues acting projects, and posts about her family, friends, boyfriend, and dogs on Instagram –– all to prove that even if a person is born with a body that makes life difficult, it doesn’t mean that life cannot be good.
Nick Jonas, the youngest member of the Jonas Brothers, struggles with Type 1 diabetes. Jonas has written about it in his music, and has discussed his struggles in public interviews. Symptoms such as unusual thirst and weight loss manifested early in Jonas’s life, ultimately leading to his receiving the diagnosis at just 13 years of age.
Still, the youngest Jonas doesn’t let the diagnosis define his life. According to SymptomFind’s article on celebrities with diabetes, Jonas looks to his condition as motivation for living a healthy lifestyle. He’s particularly caring toward his body: eating well, exercising, and monitoring his insulin levels. To help people with similar experiences, Jonas even co-founded his own diabetes-focused non-profit. The organisation, called Beyond Type 1, champions the funding of education and research for Type 1 diabetes.
Michael J. Fox
In the ’80s, Michael J. Fox was on track to become one of the world’s biggest superstars. But at the peak of his career, Fox found himself stripped of the physical fitness that was part of his unforgettable screen presence. At 29, he was diagnosed with Parkinson’s, a degenerative brain disorder that causes difficulty in balance, coordination, and movement.
As difficult as it was to navigate a disease that affected activities as basic as walking, Fox persevered. He took smaller acting roles and excelled in them; he focused on caring for his family. As he said in his profile on The Guardian, Fox copes with his incurable illness by paying attention to the blessings he does have: the ability to move, to communicate, and to express affection. In 2020, Fox published a book called “No Time Like The Future.” In it, he discusses his perspective on illness, mortality, and health, hoping that readers with similar experiences can find strength in his continuous battle.
In 2011, tennis superstar Venus Williams was diagnosed with Sjögren’s syndrome, an autoimmune disease that causes the body to mistakenly destroy healthy tissue. Before her diagnosis, Williams experienced a wide range of symptoms, including swollen joints, eye and mouth dryness, and fatigue. However, despite her health conditions, she was able to continue with her exceptional career in professional tennis –– thanks largely to lifestyle changes and interventions from a rheumatologist.
Williams has since aimed to bring greater awareness to Sjögren’s syndrome and other rheumatoid diseases. In 2019, she became the official spokesperson for the American College of Rheumatology’s (ACR) public awareness campaign event, Rheumatic Disease Awareness Month. During the event, she discussed her struggles with the disease, as well as the steps she took to manage it.
It can be difficult to speak out on complicated issues like health, especially when having such a large audience can amplify the possibility of public scrutiny. More of us should be brave enough to use our platforms to raise awareness and lend strength to underrepresented communities.