Why I Share Personal Posts About My Health on Social Media

One question I am asked repeatedly is,”Why do you share about your health status online?”

Recently I was asked, “Why do you share your personal diagnosis? You could have just posted about XYZ illness.”

I thought about it, and this is how I’d respond to those who ask why I share about my rare condition.

When I post about something that is considered personal, believe me when I say that I put a lot of thought into what (and how much) I post. For every post I publish on my blog, there are 10 more that I do not (which are still in draft mode). Usually, the posts I publish barely scratch the surface of what I’m experiencing. They usually have some kind of humor associated with them, where I am making fun not only of the condition, but also of myself.

When I first started seeing medical professionals a decade ago, I was so focused on the technicalities that I forgot to acknowledge my emotional coping strategies. I thought by putting on a devil-may-care attitude and hiding my emotions, I was being strong but instead when the emotions finally came out, I was gasping for breath.

Writing became a way to express my thoughts and emotions — the fear, the anger, the doubts, the questions, the disbelief, the guilt, the sadness that I deal with. It became a way for me to answer and deal with the plethora of “well-intentioned,” “disbelieving” and sometimes “tone deaf” questions or opinions that came my way.

I also realized by answering those questions and writing about them, I was not only learning about it myself, but also making people aware – since they most likely had not heard of the condition. Through writing, I helped them understand that illness can come in all forms, shapes and sizes.

I definitely do not post to seek attention to myself, but to really capture one’s attention to an illness that impacts people in so many different ways that even doctors are baffled. We often share or support something if someone we know has been impacted by it, and that’s why so many of us share posts saying “If you or someone you know has been affected by XYZ illness, share this message, or ribbon etc. to show you care and to create awareness.”

By posting about my illness, all I am doing is putting a face to this so that the next time my family, friends, and/or extended circle hears about my illness somewhere, they might remember that someone they know lives with it, and choose to enhance their understanding of my experience.

By being aware, I am not only expanding my knowledge and understanding of something, but I am also getting out of the confines of my mind, getting rid of the stigmas and observing something in action.

Follow this author’s journey on Expect the Unexpected