A Valentine’s Day Guide to Loving and Being Loved With Sarcoidosis
Simple ways to show someone with a chronic illness that you love them
When I was in grad school, I was a teacher’s assistant for an English literature class about 14th century author and poet Geoffrey Chaucer. During my first opportunity to teach the class, we focused on his poem “Parlement of Foules,” in which St. Valentine’s Day is designated as the day when all birds select their mates. What I remember most from that lesson is that my professor said it was the first known association of love with that holiday.
Centuries later, it’s nearly impossible to approach Feb. 14 without thinking about love — the love we have, the love we’ve lost, and the love we hope to have. While we often think about romantic love, this can also be a time to reflect on other kinds, such as familial love and friendship. We may even think about food, places, and activities. I can recall multiple sitcom episodes in which a character could say “I love macaroni and cheese,” but they couldn’t say “I love you” to their partner.
With sarcoidosis, that love can be a little different. Of course, we love our partners, parents, and friends. As our disease progresses, though, the dynamics of those relationships may change as our loved ones become caregivers for us. That adds another layer of love and gratitude for all they do to help get us through the day.
Even more than mac and cheese, the things we love may now include treatments that help alleviate our symptoms. The people we love often include doctors who listen, care, and do all they can to find answers. And we develop a great love for the sarcoidosis and rare disease communities, which become our extended family.
Just as the question “How are you?” can provoke a very different feeling when our answer isn’t positive, showing and receiving love can look different for us. We may not have the strength or energy for a night on the town, not to mention still needing to take precautions against COVID-19.
Fortunately, showing love to someone with sarcoidosis can be easier than you might imagine. Those three special words are great, and it warms my heart to hear them, but sometimes the simplest acts can mean even more.
Following are three simple ways to show love to someone with a chronic illness.
Listen
Listen not just for the opportunity to respond, and not to figure out how you can solve our problems. Quite often, you can’t, but that’s not the point. Just listen. Really hear what we’re saying. Let us vent. Let us cry. (Cry with us.) Let us laugh. (Laugh with us.) Listen to more than our words. Hear our tone. Hear our body language. Hear what we’re trying so hard not to say, but still need you to know.
Believe us
I know, it can be hard sometimes. This disease doesn’t make sense. Even doctors and researchers don’t fully understand it. We might know someone who can run a marathon with sarcoidosis while we get short of breath just walking to the kitchen. We may be able to go for a walk one day and feel too weak to even get dressed the next. Just because it doesn’t make sense doesn’t mean it isn’t true. And that only adds to our frustration.
Be there
It can be that simple sometimes. Sit with us. Hold our hands. Allow us to just be with you, whatever that means at the moment. We might not want to talk about how we’re feeling. We might not want to talk about our appointment schedule. We might not want to talk at all (but if we do, we really want you to listen and believe us). But also understand that, sometimes, “being there” means not being right there. If we need a little time to be alone with our thoughts, that’s not a reflection of how we feel about you.
This Valentine’s Day, instead of enjoying a fondue date night with my husband, I’ll be getting my intravenous immunoglobulin infusion and coming home to rest. But that’s surely a sign of love, too: loving myself enough to prioritize my health.
Loving ourselves can be the hardest, most important form of love. It means valuing ourselves as human beings, regardless of our health or productivity. Loving ourselves means forgiveness. When our bodies fail us, it’s easy to get angry, to hold a grudge. But loving ourselves means understanding that none of this is our fault.
“Learning to love yourself/ It is the greatest love of all.” — sung by Whitney Houston
I wish you all a happy Valentine’s Day.
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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