Learning to process my feelings when medical trauma leads to survivor’s guilt
It can be hard to understand why some patients survive and others don't
Before my medical journey began, I had heard the term survivor’s guilt before, in reference to mass shootings, natural disasters, or other tragic events. Living through something traumatic changes your outlook on life. But I never anticipated that major medical events could come with guilt as well.
Three years ago, I was gravely ill in the ICU for nearly two months and approaching death. A rare disease called atypical hemolytic uremic syndrome (aHUS) sent me into multiorgan failure, and I needed 18 blood transfusions, along with kidney dialysis, plasmapheresis, multiple blood pressure medications, and Soliris (eculizumab), which I still receive today.
I had been healthy before this illness slowly took over my body. I was an active and working single mom. Becoming so sick was life-changing, and I wasn’t prepared for the road that lay ahead.
A humbling experience
Between being in the ICU, dialysis for five months, and Soliris treatment for the past two and a half years, I’ve seen a lot of sad things. I’ve crossed paths with many other patients — some faring better than me and others in worse condition.
It’s easy to become trapped in my feelings when I’m having a rough day, but seeing other patients quickly humbled me. I’m not diminishing anything I’ve been through, but many people are traveling a harder road than I am.
When I was released from the hospital, I attended a dialysis clinic, which was the hardest part of my journey. Several people I encountered there died or came very close to it. I also met people who had been on dialysis for years, and will continue to be for the rest of their lives. When I receive Soliris treatment, I see patients who are fighting for their lives.
Despite everything I’ve been through, I still have some semblance of normalcy each day. Due to medical challenges and costs, I lost my home, my car, and my career in the blink of an eye. Yet after years of struggle, the door to a new life has opened.
Today, I have a new life, a new love, a new home, a new car, and new opportunities. I feel like in order to achieve the bliss I feel today, I had to traverse the boundaries of hell — and this makes me feel guilty.
It’s a miracle that I survived kidney failure, a liver bleed, near complete destruction of my blood platelets, and blood pressure so high that my nurses were shocked. I think of the others who faced similar medical trauma and did not survive. And there are many.
This is where survivor’s guilt — which the American Psychological Association defines as “remorse or guilt for having survived a catastrophic event when others did not” — comes into play. What made me worthy of surviving when so many others haven’t? I’ll never understand why I was spared.
All I can do is try to make my second chance count. I must appreciate every opportunity I’m given in this life. Because surviving what I did was like “Walking on Water.”
Have you experienced survivor’s guilt? What steps did you take to understand and process it? Please share in the comments below.Â
Note: aHUS 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 aHUS News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to aHUS.
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