The pros and cons of sharing my Cushing’s disease story online

I turned 29 last week, and for the first time, I no longer feel like I’m waiting for life to happen.

In the past, Cushing’s disease took over every aspect of my life. I was diagnosed in 2020, though I’d been experiencing symptoms for years. After undergoing surgery to remove a pituitary tumor and enjoying six months of perfect health, my team discovered that I had another tumor.

I’ve now reached a point where I’m used to being chronically ill, and I’m happy with the direction my life is going. I’ve found my passion, I have a beautiful husband, and we have a great plan for the next five years. It may take time to reach all my goals, but my disease is no longer debilitating. I know who I am, and I’m excited for what’s next.

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Day to day

But when it comes to day-to-day issues, they can topple me. Yes, I know who I am. Yes, I’m proud of my goals. Yes, I’ve grown, advocated, and shared about my illness. But that doesn’t make me immune to comments, messages, or looks. Sometimes people seem to forget that I’m a human being with feelings. I’m not just words or videos on a screen.

Between my social media platforms and this column, I’ve been told I don’t advocate well enough, my stories are boring, I’m boring, I’m too fat, I’m fatphobic, I’m annoying, and so on. Recently, it’s made me want to hang up my hat.

People expect so much from those of us who put our stories out there. They want us to respond quickly, be the perfect advocates, and cover whatever topic they need. I do all of this to the best of my ability while working multiple jobs, following my dreams by writing and sending out my book, maintaining my relationships, and trying to manage my health. It can be exhausting. Every time I receive a comment, my stomach drops and my heart starts to beat faster.

Advocates are humans, and we’re already doing so much emotional labor by teaching, writing, and sharing our most vulnerable moments. And sometimes it feels absolutely thankless. But then I get a message from someone saying that if it weren’t for me, they wouldn’t have gotten their diagnosis. Or someone will reach out to say that my writing has made them feel less alone. And suddenly, all of those negative comments disappear, and I remember why I do this.

I can’t be everyone’s favorite person. But I can share my story and hope that people are able to learn from me. And I can hope that my experience with Cushing’s disease will help guide others on their own journeys.

That being said, I don’t need to give up parts of myself to accomplish this. If I receive rude comments, I can ignore or even delete them. I can block people. I can take a break. I am a person, and if anyone treats me as less simply for sharing my story, I don’t owe them anything.

Writing for Cushing’s Disease News and sharing my story on social media requires vulnerability. I’ll keep being vulnerable, but I will also protect myself and my mental health.

You can also follow my journey on TikTok and YouTube.

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.