Finding joy while living with sarcoidosis is imperative
We can start by identifying simple pleasures like a cup of coffee or a corny joke
Last week, my husband and I took a road trip to see the Yankees play the Reds in Cincinnati, checking another stadium off our bucket list. We went out for brunch before the game and had a nice chat with our waitress, mostly admiring each other’s tattoos. The food, our server, and the overall vibe of the restaurant were so enjoyable that we decided to go back the next day before heading home.
This time, I let our waitress know how much joy she had brought me the previous day. One of her tattoos, an image of Dumbo with Mickey Mouse-silhouetted balloons, flooded my heart with memories of a trip I took with my grandmother when I was little. Gram and I had ridden the “Dumbo the Flying Elephant” ride at Disney World, and thoughts of that time kept me smiling for hours (even through the Yankees’ loss that night).
We talked more about our tattoos, our late grandparents, my glasses, and — ever so briefly — the state of the world around us. I told her that in chaotic times like these, it is crucial to find, create, and cherish moments of joy where we can. She agreed, adding that our encounter was one such moment for her, as well.
It can be difficult to rejoice while dealing with the symptoms and losses that sarcoidosis forces us to endure. The pain can be both physical and emotional, and the losses even more expansive: careers, abilities, even people we once considered friends. But that’s why it is imperative that we find a way.
We can start by identifying simple pleasures: a great cup of coffee, a corny joke, or a “Harry Potter” movie marathon. Beyond that, we can move on to the people we spend time with and the things we do together. That can be as simple as playing footsie with my husband or ordering vegetable shawarma and watching “Jeopardy” together.
When we’re able, of course, we can create memories and moments of joy beyond the couch, as well. For me, these days, that includes attending as many New York Liberty basketball and New York Yankees baseball games as possible. Walking to and around the big stadiums makes it harder for me to breathe, but my mobility scooter makes a world of difference.
‘Sarcoidosis: would not recommend’
Surprisingly enough, it’s not only these momentary escapes that can delight us. As we adapt to life with chronic illness, we can even learn to value aspects of the disease itself.
One thing that’s especially frustrating about sarcoidosis is its unpredictability. Our symptoms wax and wane from day to day, even moment to moment. While it’s easy to focus on the debilitating flares, they can give us a greater appreciation for the low-symptom days when we feel more human, more able to participate in our own lives.
While receiving an infusion, Kerry Wong sports one of the things that brings her joy: a humorous T-shirt. (Photo by Kerry Wong)
As a multisystem disease, sarcoidosis requires us to see many specialists, one for each organ or system involved. It can take time to put together a medical team that listens, communicates, and works with us to determine the best path forward. When we find the right doctors, though, they offer comfort, validation, and understanding as well as much-needed symptom relief.
Many people turn to humor as a coping mechanism, an especially vital strategy for anyone living with a life-altering disease. Thankfully, chronic illness-related cartoons, jokes, and memes abound. A quick scroll on our phones will always bring a smile, which we’re sure to share again (and buy the merch). I couldn’t resist a shirt offering a one-star review: “Sarcoidosis: Very bad, would not recommend.”
A simple text message can warm our hearts when it shows true understanding and empathy. A friend, also disabled by her arthritis, often prefaces her messages to me with a disclaimer that I don’t have to reply right away, as she knows I need to rest (and I do the same for her). A simple “thinking of you, just wanted to say hi,” without the expectation or pressure to respond, can be the highlight of our day.
Ironically, canceling plans can be refreshing for us, too. I know it seems counterintuitive, as we always feel so bad when we’re the ones to cancel. But sometimes, when it’s not a special event, just an ordinary get-together, asking for a rain check can be a tremendous relief. It reassures us that the intention to see us is still there, but it means we can just relax for another day … phew!
From random acts of kindness to support within our community, we can find and create moments of joy all around us to get through the difficult times. Best of all, we can pay it forward, bringing joy to others when they need it most — and that reflects back for us, too!
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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Kathy Lindsey
Thank you so much for your uplifting article. I am in the middle of a bad flare and on oxygen. I try to be thankful everyday but looking for joy is a great idea!
Brad DeMaagd
Spot on Kerry! Sarcoidosis and all the shifting nature of symptoms or flares definitely teaches you to be fluid in terms of what you may plan or plan with others, and having people who understand our situation in that respect is valuable, and cancelling over symptoms, teaches to find enjoyment in small moments.
Carla
I was diagnosed with sarcoidosis a few years ago. No doctors worried about it. Got a pulmonary doctor, it never was the same one in the office. I got an inhaler and a rescue inhaler. The sarcoidosis was no big deal. I have done breathing test. Everything is good. I had to get a heart doctor. I have heart failure 50% with tachycardia. Then, I found out I have stage 3b kidney failure, last week the kidney doctor informed me if the calcium doesn't go down and other things, I will go on dialysis. I was having neck and lower hip and back pain. Went to a Orthopedic surgeon, she did x-rays MRIs , showed fractures, height loss, scallions, other stuff. Doing hip MRI July 24, 25. Anemia, very low vitamin D. So, I have been told I have sarcoidosis, does all of this tie in together? Also, all of my joints hurt, knees, hands, fingers,shoulders, swelling feet, days walking is a chore. I have not deep cleaned or dusted my house in over a year in a half. I never left anything in my house dirty. Where do I start? How do I find out?