Sharing the painful truth can comfort chronic illness patients

We deserve to be truly seen and heard — especially by ourselves

Written by 🦋 Kerry Wong | July 17, 2026

Like most girls growing up in the 1980s, I had a massive crush on Michael J. Fox. I watched all of his shows and movies (many times) and hung his picture on my bedroom wall. When he started writing books, I had to read those, too.

These days, I admire him even more for his kindness, spirit, and generosity than I ever did for his smile. His foundation has raised billions for Parkinson’s disease research, and his books offer an inside view from “an incurable optimist” into how his diagnosis has affected his life, family, and career. He continues to raise awareness with humor, including his Emmy-nominated guest-starring role on the Apple TV series “Shrinking,” where his character offers the empowering mantra, “F— Parkinson’s!”

When I was diagnosed with sarcoidosis in 2015, I wanted to learn all I could, both about the disease itself and from the people who live with it. At an event in 2017, I met dozens of sarcoidosis patients, including special guest Karen “Duff” Duffy Lambros, an actress, model, and former MTV veejay living with neurosarcoidosis. She offered words of encouragement (and tips to look your best on camera).

Duff has been an outspoken advocate for people living with sarcoidosis and chronic pain. She, too, has written several books, infusing the wittiness of “an incurable wiseass” with advice for “living with chronic pain without turning into one.” She continues to speak out to support our community and even wrote the foreword for my book, “Kaleidoscope: Rare Disease Stories.”

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‘Little Ms. Warrior’

I recently read another Gen X celebrity memoir: Christina Applegate’s “You With the Sad Eyes.” Applegate shares the life most of us never knew about, full of physical and emotional trauma hidden behind her onscreen persona. She also delves deeper into what she has already addressed publicly: her diagnoses of breast cancer in 2008 and multiple sclerosis (MS) in 2021.

It’s notable how differently the actress has spoken about the two. After her double mastectomy, she told Oprah Winfrey it had become a “blessing,” even joking about the perks of breast implants. These days, we might call that toxic positivity: forbidding ourselves from expressing (or even feeling) the completely natural negative emotions that arise in response to a difficult situation. Reflecting all these years later, Applegate calls herself out:

“Here’s how I feel about that interview now: it was bull—-. … I had lied, thinking I was being uplifting. I was acting like Little Ms. Warrior, but that’s not how I really felt. Worse, I’m sure I was just making women who had a similar diagnosis, and who were perhaps sitting in their homes watching me on Oprah, feel even more devastated, even sadder because there I was, talking about f—— blessings when they were going through a living hell.”

Now, she promises to be more open, honest, and real as she discusses her disease. “MS sucks. Every little stinking part of it sucks.”

Telling the truth

This reminded me of my early days on Weight Watchers, and the difference between what I called “perfect Barbie doll” leaders and “real” ones. The Barbies spoke as though becoming a member meant never wanting a cookie again, always being satisfied with salad, eternally excited to exercise. The real ones acknowledged their struggles: Sometimes they overdid it. Sometimes they lost control. Sometimes they made unhealthy choices. But they kept going, and by following their example, we could, too.

I needed that reminder. I had noticed that quite a few of my recent columns seemed to be negative: I wrote about being overwhelmed, always in pain, and sick of being sick. I was feeling bad about that, since my goal is to encourage people who are struggling with this disease, not bring them down with me. But Applegate reminded me that this is necessary:

“I think women feel less alone, and more empowered, if someone tells them the truth. In my mind, I see a woman, whatever she’s suffering from, saying to herself, ‘I’ve had a great day today, and that’s so much more powerful because I’ve had sixteen terrible days leading up to it.’ This is more meaningful than telling women that they should feel like, ‘I can do this’ every day or ‘This is a blessing.’”

We’ve got to acknowledge the most difficult parts of this disease. Those feelings are valid, and we deserve to be truly seen and heard — especially by ourselves. That enables us to form real connections, so we don’t have to go through this alone.

It also helps us appreciate the moments that aren’t so bad. Applegate notes, “MS sucks, but the MS community rocks.” I can say the same thing here. Sarcoidosis sucks. It’s painful. It’s scary. It’s exhausting. But it has connected me with a community that supports me in my struggles and celebrates my success. So I’ll keep sharing both.

Note: Sarcoidosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sarcoidosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to sarcoidosis.

🦋 Kerry Wong

About the Author

Kerry Wong lives in Westchester, NY, with her husband, the boy next door she had a crush on since she was a child. She was diagnosed with sarcoidosis in 2015, after an 8-year search for answers. Though disabled, Kerry remains active as a writer, educator, and advocate for the rare disease and chronic illness communities. Her goal is to help others living with these conditions feel seen, validated, and empowered. Kerry recently published "Kaleidoscope: Rare Disease Stories," a diverse collection of true stories told by nearly 50 rare disease warriors; she plans to expand this into an anthology series. Through her column, Kerry shares how chronic illness has led to transformation, and invites readers to float with her, “like a Buttahfly.”