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How Chronic Illness Allows Me to Relate to Celebrities

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What do I have in common with Matt Iseman, Lady Gaga, Selena Gomez, Bob Saget and Rob Thomas? Yes, they are all celebrities, but I’m not; well, my mom would disagree since she thinks I am. But there is something deeper that brings our worlds together – chronic illness. There is a burst of celebrities speaking out about chronic illness and I love it. The chronic illness world is often invisible, but when a celebrity speaks out the healthy world listens. I applaud celebrities who are candid about their chronic illness journey or their loved one’s journey.

On the day Selena Gomez announced her kidney transplant, my Facebook status read, “The moment the world is talking about lupus and you smile. Thank you Selena for being open with the world! Our journey just became more real to others because of you!” Her candid Instagram post sparked a media frenzy and the world was talking about lupus. Even our local news did a whole segment on lupus and the destruction it can cause in a lupus warrior’s body.

During the same week Selena disclosed her kidney transplant, Lady Gaga opened up about her fibromyalgia diagnosis. She has never been silent about her chronic pain struggle, but for years, the world had speculated as to what sort of pain she struggled with. Fibromyalgia is mostly a foreign word outside of the chronic illness world, but once Lady Gaga claimed her diagnosis, her celebrity status made “fibromyalgia” a familiar word and diagnosis overnight.

Matt Iseman will always hold a special place in my heart and for my own personal journey. I was diagnosed with rheumatoid arthritis a little over eight years ago. When I heard I was being tested for RA, I came home and happened upon awareness videos Matt had made on a popular health website. As he told his journey through comedy, it felt so real and it was much less scary to know a celebrity had “it.” And every RA warrior was so proud as we watched Matt compete and win Celebrity Apprentice a few months ago. His win for The Arthritis Foundation was for all arthritis warriors. As he told his personal story during the final episode, he was candid discussing how devastating RA can be.

After the release of Rob Thomas’ song “Her Diamonds,” he spoke of his wife’s journey of pain and illness. He and his wife, Marisol, recently disclosed that her health struggles were a result of Lyme disease and the world began to talk once again. Lyme disease often mimics many other illnesses and the diagnosis is often missed for these warriors. Rob opened up about Marisol’s misdiagnosis and has continued to raise awareness and funds for Lyme disease research.

Few people know of Bob Saget’s contribution to the chronic illness community. That is because Bob’s fight is for a rare autoimmune disease which most have never heard of: scleroderma. Bob Saget is so involved in the fight that he’s even a member of the Scleroderma Research Foundation’s board of directors. His sister Gay was a beautiful scleroderma warrior and during her life and since her death Bob has taken an active role to raise awareness and research funds for this rare autoimmune disease. He holds yearly fundraisers and even produced a movie called “For Hope,” a fictional movie based on his sister’s real scleroderma journey.

These celebrities may not totally grasp the great impact they are making on awareness. With awareness brings research funds and research funds mean new treatments.

For the chronic illness world, the awareness these celebrities raise mean that when a lupus warrior states she has lupus, instead of blank stare, she now hears “Oh yeah, Selena Gomez has that” or “Nick Cannon has that, I remember reading something.” When an RA warrior speaks openly about her journey, she will now hear, “Matt Iseman has that, I saw it on Celebrity Apprentice” or “I never heard of that until I read about Glenn Frey’s death last year.”

Although I am not a celebrity, I can tell you how some celebrities live. Because I live their secret life!

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Lead photo courtesy of Selena Gomez, Matt Iseman, and Lady Gaga’s Facebook pages

Originally published: September 18, 2017
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