If you ask two different people what they know about lupus, odds are you could get completely different responses. Why? Because lupus is notoriously hard to identify, and its complexity is often misunderstood. Just check out how many different types there are, and you’ll start to get an idea.
Systemic Lupus Erythematosus (SLE) is a chronic, systemic autoimmune disease where the immune system attacks healthy tissues and cells, causing inflammation in the joints, skin, kidney and other organs. The most common symptoms include skin conditions (typically a butterfly-shaped rash across your cheeks and nose), extreme fatigue, headaches, arthritis in the joints, and lung issues. This variety of manifestations means that although lupus affects as many as 1 in 1,000 people, you wouldn’t always know who.
To further complicate the diagnosis, one person’s experience of the disease could be entirely different than another’s. The common thread? A long, and often difficult journey to finding out what’s really going on.
If you’re living with lupus yourself, you might have found it hard to connect with others going through the same thing – much less talk about your disease publically. You may be surprised to learn that there are plenty of familiar faces out there – like Seal, Selena Gomez, Toni Braxton, and Nick Cannon – who are living and coping with lupus. And they are working hard to make sure more people are aware of this disease and how serious it is.
Multi-media entertainer Nick Cannon was hospitalized twice in early 2012 before he realized how big of a deal lupus was going to be. After receiving remarkable support from friends and family, he decided to pay it forward by creating a web series called The NCredible Health Hustle, which takes you along on his journey with lupus: from diagnosis to medical visits to going back to work. Nick also became involved with disease related organizations such as the Lupus Foundation of America, and believes in sharing his story for others to relate to: “I feel like this happened to me so I can be an inspiration, and I can talk about it.”
Actress and singer-songwriter Selena Gomez takes lupus advocacy to the next level. She shared her diagnosis publicly in 2015, and at first admitted how it was uncomfortable to talk about. But in the past couple of years she’s grown into a vocal advocate to raise awareness and support. For example, in 2016 she shared intimate details about the kidney transplant she had as a result of her lupus, and also revealed that anxiety, panic attacks, and depression – potential side effects of lupus – pushed her to take time off from her music career. This transparency alone has inspired many more to speak out about their experiences and seek help. Not to mention she’s also helped raise $500,000 for the Lupus Research Alliance and made a personal donation towards lupus research.
If you have lupus and want to start using your voice or platform to talk more about it, you might take some inspiration from these advocates. Also, check out how others are sharing their experiences and spreading positivity through engaging and relatable blogs like LupusChick, The Life of a 30-Something with Lupus, Sometimes, it is Lupus, or Kaleidoscope Fighting Lupus (an award-winning nonprofit blog).
As more people – celebrities and otherwise – raise their voices to talk about lupus, the more it stops being a taboo and becomes a topic of real-life conversation. However you choose to get involved, just remember that there’s nothing to be ashamed of. If you’re ready, just start talking.
May 8, 2018
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This blog does not provide medical advice, nor is it a substitute
for professional medical advice, diagnosis or treatment.