My Take on How Empathy Wins Over Sympathy

Scleroderma knows how to be a Debbie Downer. I can be enjoying a moment and BAM! Some debilitating pain or body malfunction pops up to ruin it.

I can’t control when I’ll need to hit the pause button on our fun, but I can control how I approach the situation so I don’t become the equivalent of the lights going out at a party.

Having become a pro at living with pain and limitations, I’ve learned that if I share why I can’t do something, people understand. But they also show pity — which makes me feel even worse!

I discovered that if I use colorful, silly descriptions to share the why behind my limitation, I cushion the negative impact it has on the company I’m with.

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Explanations require careful thought

My husband and kids were so excited to be at the Tampa Bay Lightning hockey game. We walked endlessly around Amalie Arena looking for an elevator to take my broken lungs to the top floor. With the game about to start, I could see their excitement shifting to frustration.

My youngest sighed and said, “Can’t we just take the stairs?” I know I should’ve taken a moment to explain how that could backfire, but I have a toxic trait: I think I can overcome any challenge.

Without hesitation, I turned toward the stairwell and braced myself mentally for the battle ahead. My husband sounded the alarms and did his best to discourage me. But stubbornness is my other toxic trait.

I made it up the first flight of 30 to 40 steps, but it didn’t feel good: burning lungs, pounding heart, shock waves of pain, as well as complete disorientation while my vision spun around and around.

It was no surprise that I needed to take a break. Without question, my family huddled around me while I leaned against the wall in full concentration, practicing mind control so I wouldn’t panic.

“Are you ready, Mom?” my teenage daughter asked, with anxiety in her voice.

Here’s where I could’ve said, “I just need another minute.” But if I know teen girls, I’d probably get a quick eye roll. And if I shared the truth, “I just need a minute or I’m going to pass out,” I’d get those uncomfortable, concerned looks of worry.

Explaining with a splash of color creates a positive outcome

Luckily, I have three choices when sharing the details of my condition. Like the two I just mentioned, I could avoid explanations or just give the straightforward truth. But neither of these choices gives me the result I need.

The third choice is my preferred weapon. I choose humor and exaggeration to help me build understanding. It helps break the tension, safeguard everyone’s good mood, and generate empathy so I have the support I need.

Standing in the stairwell seconds away from passing out, I explained, “I feel like I just crossed the finish line after running a marathon. (Insert chuckle.) Now I feel like an ice skater doing one of those spins where their hair whips around like a propeller. I just need a minute; otherwise, you’ll all be carrying me out of here, or they’ll kick us out thinking I’m too drunk to walk.”

Sharing what’s happening with my body builds trust

We eventually made it up three treacherous flights. It took way too much time, but not once did my healthy clan complain about my snail’s pace. And not once did they ask if I was going to make it. I’d built trust with them by saying no when my body couldn’t continue and explaining my situation. I also shielded the night and protected everyone’s good mood with lighthearted buffers.

I believe the why is the most important thing to explain. The why is how I let people try on the shoes I walk in. Others cannot support what they don’t understand.

The way details are shared affects the outcome

But I also believe the way we deliver this lesson is equally important. Making people feel bad or worried just adds fuel to an already unfair situation. There’s a difference between sympathy and empathy. I need patience, understanding, encouragement, and support. Not sadness or pitiful sorries.

The next time you need to temporarily pull the brakes on a good time, carefully consider how you want others to feel. Make sure your descriptions and explanations set up the type of responses you want in return.

Note: Scleroderma 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 Scleroderma News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to scleroderma.