In sickness and in health: Living and loving with sarcoidosis

As we prepare to renew our marriage vows, I'm considering some in particular

by 🦋 Kerry Wong | April 18, 2025

Dearly beloved,

Earlier this month, my husband and I attended our niece’s wedding. Later this month, we’ll renew our vows to celebrate our 25th wedding anniversary. It’s no surprise that in between the two events, I’ve been reflecting on love, marriage, and what we mean when we say “I do.”

Do you?

Traditionally, we’re asked to take each other in good times and bad, for richer or poorer, in sickness and health, and so on. When we’re young and healthy, these concepts may seem vague and distant, almost abstract. We think of sickness as a bad case of bronchitis or an occasional stomach bug — a minor inconvenience that we can easily help each other through. We don’t think (well, I certainly didn’t) of a never-ending, life-altering, invisibly disabling rare disease such as sarcoidosis.

Sarcoidosis and all that goes with it can test the limits of those vows. The struggle to understand our symptoms, the endless search for answers, and the dismissive doctors we see certainly contribute to the bad times. Expensive treatments, insufficient insurance, and loss of employment because of a disability surely make us poorer, as well.

The plans we have to cancel, the trips we’re unable to take, and the friends and family we don’t get to visit can make us frustrated, anxious, and depressed. Our partners share those sentiments while also feeling helpless as they watch us suffer. At times, we may misdirect those feelings and project them onto each other, leading to unnecessary arguments and amplifying negative emotions.

Heart involvement seen for 1 in 10 pulmonary sarcoidosis patients

With all that in mind, it’s fairly common for people with chronic illnesses to feel like a burden to our partners (and friends and families). Sadly, not all relationships are able to survive the diagnosis. Thankfully, my husband reassures me that he doesn’t see me that way. It’s the disease that’s a burden (on both of us), but it’s one we carry together.

To have and to hold

As I contemplate the new vows I’ll say at the end of the month, I’m looking back to the important words we shared 25 years ago and seeing how they hold true today.

Our officiant began with a reading of Shakespeare’s Sonnet 116, which offers his views on love. He declares, “It is an ever-fixèd mark / That looks on tempests and is never shaken.” Sarcoidosis is the storm that’s turned our lives upside down, but my husband has never wavered in his love for me or hesitated when I needed his support.

Even more than the sonnet, I’m replaying our song, “After All” by Cher and Peter Cetera, in my mind and in my heart. The lyrics seemed perfect for us back then, as we’d dated on and off (when I was a teenager) before realizing “it’s meant to be/ Forever [him] and me/ After all.” Listening to it now, though, there’s another verse that strikes a chord.

“When love is truly right
(This time it’s truly right)
It lives from year to year
It changes as it goes
Oh, and all the way it grows
But it never disappears.”
— Lyrics by Dean Pitchford

Decades ago, I embraced the idea of transformation through a healthy lifestyle, doing what it took to “become a buttahfly,” to feel beautiful inside and out. When I got sick, though, I could no longer keep it up. The joint pain and weakness meant I could no longer do the Tae Bo and Power 90 workouts I’d thrived on. Fatigue and shortness of breath prevented me from taking the hourlong walks I’d enjoyed. And a decade on corticosteroids added over 100 pounds, which exacerbated nearly all of my symptoms.

From this day forward

I had to adapt — to transform, once again, in my mind even more than my body. I had to find new ways to connect and new avenues to support myself and others. By making these changes as I go, I can focus on what I’ve gained along this journey — advocacy, community, and inner strength — rather than what I’ve lost.

Likewise, while any relationship “changes as it goes,” sarcoidosis forces us to adapt in ways we may not have anticipated. My husband has always supported and protected me, but with my disability, that’s become more literal as he offers his arms to help me up the stairs or pick me up when I fall.

Sarcoidosis affects my lungs, joints, skin, and nervous system, and indeed every aspect of my life and every aspect of our life together. We’ve learned and adapted, and our love has grown (“oh, all the way”). It has made us more patient, compassionate, and communicative (therapy helps with that last part) as we identify our ever-evolving needs and abilities. Despite the many challenges that sarcoidosis puts on any relationship, we work together so our love “never disappears.”

(I may now kiss the groom.)

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.

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About the Author

🦋 Kerry Wong 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 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. She recently published Kaleidoscope: Rare Disease Stories, a diverse collection of true stories told by nearly 50 rare disease warriors, and plans to expand this into a series. Through her column, Kerry shares how chronic illness has led to transformation, and invites readers to float with her, “like a Buttahfly.”