Diet and exercise choices aren’t so obvious with sarcoidosis

A few days ago, I saw a post on Bluesky that made me chuckle … and then it made me think. Originally posted by @ONeillJones on another platform and reshared by @chronicillness.bsky.social (known as Chronic Illness Humor), it posed a simple question:

“Y’all think there are vampires that eat garlic even tho they’re not supposed to? Like lactose-intolerant people who refuse to give up cheese”

What made it so funny was that I now fit into that latter category. I love cheese. I have always loved cheese. I will always love cheese. Even if cheese doesn’t always love me.

I’ve been a vegetarian for most of my life. Not a vegan, specifically because I couldn’t live without cheese. When we pick up sandwiches at the deli, my go-to order is a “cheese and cheese and cheese and cheese” (with lettuce and tomato, mustard, and light mayo). And I’ve spent many a birthday, anniversary, and Valentine’s Day at the Melting Pot restaurants, with all varieties of cheese fondue.

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So I was devastated when I realized that a recent increase in severe abdominal pain and other gastrointestinal symptoms seemed to coincide with especially cheesy meals. Was this for real? Could a person become lactose intolerant at 50 years old? Or was it, perhaps, related to my sarcoidosis?

Anything is possible, right? After all, sarcoidosis can affect any part of the body, so that includes the gastrointestinal (GI) system. I’ve also had GI problems since I was a child, with an ulcer in high school and a “spastic colon” long before it became more commonly known as irritable bowel syndrome.

In this case, I was able to conduct a simple experiment to test the theory. I avoided cheese and other dairy products for several days, and I didn’t get those severe pains. Then I took Lactaid (lactase) pills, designed to help the body digest lactose, with my regular cheesy meals, and I was OK then, too. Success! If only diagnosing sarcoidosis were that easy!

To be sure, I’m still going to talk to my gastroenterologist about this new development, but I believe I’ve answered my own questions about it. Best of all, I’ve found a way to keep cheese in my life (and on my plate)!

Doing the best for our bodies

When I thought about that social media post, though, I realized it reflects so much more of life with chronic illness than lactose intolerance and vampirism. More broadly, it’s about how we don’t always do what’s best for our bodies, what we deem “worth the risk,” and how we mitigate the negative effects.

That’s most apparent as we decide how to manage our disease. We assess the severity of our symptoms, the efficacy of available treatments, and the side effects we may have to endure. We weigh the pros and cons, speak with our doctors and other patients, and consider the quality of life we could have with and without the treatment. Then lather, rinse, repeat whenever it’s time for a change.

While there’s no magic food that will cure sarcoidosis, some patients feel a difference when they follow a Mediterranean, anti-inflammatory, or plant-based diet. Still, we allow ourselves to indulge those sweet, salty, crunchy, creamy, decadent cravings from time to time. It’s all about finding the right balance.

Physical activity can present a similar challenge. Sure, “everyone knows” exercise is good for you … but with sarcoidosis, it’s not that simple. Fatigue, pain, and shortness of breath can hinder our ability to do a traditional workout. Pushing ourselves too hard can trigger a flare, incapacitating us for days afterward.

I’m no longer able to do many activities I used to love, but I do what I can when I can. That means — equally importantly — respecting what I can’t when I can’t, as well. Physical therapy helps me to work within my limitations, with professional guidance, so I don’t make anything worse.

Socializing, vacationing, and attending special events can all take a toll physically, but living without them can do even more harm, mentally and emotionally. These experiences, and the people we share them with, ensure that there’s more to life than disease management, and we all deserve that.

It’s not easy, though; most days, my body wants nothing more than to stay in bed. Just getting ready can be draining for people living with sarcoidosis; we may need to take a break after a shower before we can move on to getting dressed, another before we style our hair, and so on.

Each step requires significant effort, so we must be selective about when to expend it. But when the stars align — when we’re able to plan and prepare (with rest days before and after), and the symptoms are manageable — with the right people, for the right event (or the right food), it can all be worth it.

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.