Turning Survivor’s Guilt Into Advocacy

Surviving a life-threatening event or other trauma can create guilt, even when others who’ve been through similar trauma may not have the same result. This condition is known as survivor’s guilt, and it’s an important mental health concern.

A question related to this from an audience member during a recent Rare Disease Day panel I participated in caught me off guard and stuck with me. This person had survived many years beyond their life expectancy and began to question why. This forced me to look at the other side of surviving a rare disease.

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I’m now paying closer attention to those I used to view as pessimistic in my support groups for pituitary tumors and Cushing’s disease. They may instead be navigating the emotions of survivor’s guilt. This has caused me to look internally and understand that as an advocate for those with a rare disease, I must be able to fight equally for people who share my perspective and others who may still be on a healing journey.

I was fortunate to have a support system to help me through the dark times of my journey, which is why I strive to be that light in the darkness for others.

Thank you to the audience member who was vulnerable and courageous enough to be so transparent about where they are at this time by posing a question that gave such great food for thought. If I had another opportunity to speak with them, I would want to let them know this: It’s not an accident you wake up every day. There is purpose in your survival. I would encourage you to allow your survivor’s guilt to turn into survivor’s advocacy. Your testimony will help to heal, encourage, empower, and inspire others. You are so much more impactful than you realize.

Since 2014, I have dealt with the life-changing trauma of moving from complete health to being diagnosed with a disease I never knew existed. It changed my life drastically. I understand the highs and lows of the recovery process; there are days when it does feel hopeless and days when you will feel like asking, “What is my purpose?”

But I encourage you to keep pushing forward, take it day by day, and realize this disease does not define you. It’s true that “what doesn’t kill you makes you stronger.”

Note: Cushing’s Disease 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 Cushing’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Cushing’s.