How Survivor’s Guilt Is Yet Another Symptom of Scleroderma

With each scleroderma death, a columnist wonders why she's a lucky one

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by Lisa Weber |

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Each time I read about another scleroderma warrior losing their battle, a tremendous weight crushes my soul — a combination of sadness, anger, and guilt.

I’ll always remember the fear I could hear in my mother’s voice when I first discussed my scleroderma diagnosis with her. And in my father’s emails filled with questions and research, I could feel his desperation in trying to fix his broken daughter.

I’ll also never forget how my husband’s eyes would well up with tears when we looked at each other. The dreams we had for our future were quickly being replaced with the possibility of him raising our daughters alone.

I felt for my little girls. Would they have a mama to help them get over their first heartbreak? Would I be there to help plan their weddings?

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No matter how much time has passed, I’ll never take for granted how lucky I am. My life may not be as easy as I’d like, but my disease is under control.

Time is not guaranteed

The song “Live Like You Were Dying,” performed by Tim McGraw and written by Craig Michael Wiseman and Tim Nichols, stresses how important it is not to wait to do everything you want because life is not guaranteed. But the truth is, when you’re dying, there’s not enough time to live. That’s why it hurts so bad.

When I learn someone in my support group has passed away, I immediately think of what’s been lost. They had hopes and dreams that were stolen by scleroderma.

Fighting together

I fight alongside every person living with this disease, and I stand with them while we support one another in forums and support groups. And I pray for them while doctors, researchers, and scientists race to find treatments and a cure.

While I may not know each person individually, they are my people. I understand them. When a warrior falls, I grieve. I see the tears in the eyes of their loved ones, and my heart aches for them. I can hear all the questions their families are asking, wondering if they did everything they could. I can feel the empty space in their child’s life.

All emotions are valid

Survivor’s guilt is real. I constantly question why I’m being spared. Why do I get to be one of the lucky ones?

When the scleroderma community suffers a loss, it takes me awhile to settle my emotions. I have to actively process those feelings of sadness, anger, and guilt. It takes time, but long walks, meditation, and dessert dates with my daughters help.

Every emotion we feel is valid. Don’t hide from those feelings. Whatever is heavy on the heart is important and deserves attention.


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.

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