The pros and cons of sharing online about my Cushing’s

For a while now, I’ve been sharing my story on social media and here at Cushing’s Disease News. In many ways, it’s been a breath of fresh air. I get so many positives from being part of this community and that of Bionews, the parent company of this website. I feel protected and cared for here.

But sharing a personal story online can lead to public scrutiny, which has been difficult for me to manage. I’ll break down all the effects in a most traditional manner: pros and cons.

Pros

One of the biggest positives of sharing my story online is that I’ve been able to help create a community, not just take part in one. People come to my columns, posts, and videos and leave comments. Others will then leave responses. It creates dialogue, which can help support people who are struggling to find a diagnosis.

On top of that, I’ve also made friends. I’ve met a few people who also have Cushing’s disease, and they’ve become a huge support. I’ve been able to watch them get married and diagnosed, and we’ve supported one another during more difficult times.

The best thing about making my story public is that I’m able to spread information about my experience with Cushing’s. So many people have had symptoms of the disease, but they’d never heard of it. I get comments all the time from people saying they would’ve never been diagnosed without me. I feel amazing when I read a comment like that.

The internet, on occasion, can be a beautiful place.

Cons

Of course, there are a lot of negatives to sharing my story online, too. The worst is the mean comments I get. People have made fun of my TikTok posts. They’ve fat-shamed me and made fun of how I look. Since people can pretend to be anyone on the internet, I’ve even had people dox me or pretend to be doctors to shame me. I’ve even had arguments with strangers over my symptoms, though I’ve learned to stop responding.

Another con is the expectations people have. When they’re in the process of getting diagnosed, they’re dealing with a lot — and thus, many readers have questions for me. I try to answer as often as I can, and I feel so guilty when I don’t post or can’t get back to people. I’m also not a medical professional and can only speak from my experience. I’ve learned to try my best and just answer the posts that I can.

The last thing I struggle with is deciding what to share. I try to be an open book, but that doesn’t mean that the world should hear all of my problems. I’m facing some things that the internet doesn’t know. Sometimes it makes me feel disingenuous, but I’ve realized that helping people doesn’t require everyone to know everything about me.

In my case, the pros overall outweigh the cons. I’m proud of the communities I’ve built, and I feel lucky to have found friends. I’m grateful to Bionews and the support it’s given me; in fact, this platform is my favorite for sharing information. That said, sometimes it does become difficult, and it’s important that I create and maintain boundaries to feel safe.

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.