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A How-to Guide on Showing Support for Sarcoidosis Patients


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banner image for "Float Like a Buttahfly," a column by Kerry Wong, depicting a butterfly winding through the sky

How are you? It’s such a common question, I’ve even learned to say it in multiple languages: Cómo estás? (Spanish), Eich at/ata? (Hebrew), Come stai? (Italian), Comment allez-vous? (French), Nǐ hǎo ma? (Chinese), Ti kanis? (Greek) — and let us not forget, “How YOU doin’?” (Joey Tribbiani, “Friends”).

Ironically, when people ask this question, they’re not always looking for an answer. We often say it in passing, without waiting for a response. Years ago, actor and comedian Paul Reiser did a bit about this topic, pointing out that most people don’t even finish the question. Instead, they cut themselves off midword to say, “How are yə —?”

The question, and whether people really want an answer to it, become a lot more complicated for people with chronic illnesses like sarcoidosis.

On the one hand, we want to know that people care, and their asking — and really meaning it — shows that. But it’s not that simple.

The other day, I read a story from a friend with ankylosing spondylitis (an autoimmune arthritis condition) and found myself nodding and talking to my computer screen because I felt his words so deeply. The problem is that when someone wants to know the truth, we need to think about the answer — and the answer usually isn’t good.

Every time someone asks how I feel, I have to tell them the truth, which usually includes fatigue, pain, stiffness, and shortness of breath — often, all at once. To provide that answer, I have to focus on those symptoms and how severe they are, when what I’d much rather do is try to distract myself from them.

When they ask if I’m feeling better yet, I have to say no and think about the fact that there is no cure for sarcoidosis, and the few treatments that exist can sometimes cause side effects that are worse than the symptoms they’re treating.

My focus then turns to their disappointment. I know they only ask because they’re hopeful I’ll say yes (even if there’s no logical reason to think that), so it feels like I’m letting them down if I answer truthfully. Then I think I have to make them feel better about the fact that I don’t feel better, which can leave me feeling even worse.

When people ask these questions, I try to focus on their intentions rather than their words or the end result. They mean well, but … I find myself saying that a lot: “They mean well, but …”

Genuinely caring family, friends, and colleagues often offer their best wishes, suggestions, and consolations, all out of the goodness of their hearts. They mean well, but …

It still hurts.

Some insight about dialogue

With that in mind, I wanted to offer some perspective and options. A friend with multiple chronic illnesses shared her thoughts about how to best support someone with sarcoidosis. I also asked some of my sarcoidosis family what well-meaning but poorly landing comments they’d heard the most.

“You don’t look sick!”

 That doesn’t change the fact that we are, and when said in response, it can seem dismissive of what we’ve just said.

“At least it’s not cancer (or any other condition).” “At least you’re still alive.” “At least you get to stay home and watch TV all day.”

Let me simplify this: Anything that starts with “at least” can be perceived as belittling our experience.

“Have you tried yoga?” “Have you tried kale?” “Have you tried eating a turmeric-coated carrot backward while standing on your head three times a week?”

Yes. We’ve probably tried just about everything imaginable, and definitely everything that has been studied and proven safe. If it were really that simple, sarcoidosis wouldn’t be an incurable disease over 150 years after its discovery. Suggesting simple “cures” undermines the complexity of this disease.

What we really want — and need — is to feel seen, heard, believed, and understood. We don’t expect you to understand everything about sarcoidosis; even doctors and researchers still don’t. But sometimes just acknowledging that you don’t know, you don’t have answers, and you can’t make it go away — but are with us no matter what — can be more comforting.

Believe us when we say that our daily pain levels range from tolerable to excruciating. Instead of asking how we’re feeling, perhaps just say, “I hope today is a lower-pain day for you.”

Understand that the overwhelming fatigue we experience runs through our entire body, weighing us down both physically and mentally. Instead of saying, “Yeah, I’m tired, too,” perhaps just acknowledge that it must be difficult for us.

Bear in mind that we want you to share your life with us, too, but in a way that is sensitive to ours. Don’t feel like you can’t tell us your problems because “at least it’s not sarcoidosis.” Empathy is a two-way street, and we care about you, 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.

The post A How-to Guide on Showing Support for Sarcoidosis Patients appeared first on Sarcoidosis News.

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