This is a big question that I get:
Why do I share my health online?
I know heaps of people who don't like to talk about their illnesses - for a wide range of reasons.
They may not want to be seen as "different", or want to feel as normal as they can.
Maybe they don't want to seem negative or like they are complaining.
Maybe they don't want to be viewed as someone who talks about their illness all the time - or that they make it 'their entire personality'.
Perhaps they feel like it's all too personal to share bodily issues with the public, including potentially thousands of people they don't know.
Maybe they feel ashamed, or scrutinized, or embarrassed. Maybe they don't want to be judged (let's face it, the internet can be a scary place).
Maybe they find it difficult enough to face the realities of the illnesses, so they'd prefer to just live, ignoring it all.
For whatever reason someone chooses not to disclose their own personal health struggles, that is the right choice for them. I begrudge no one for keeping their cards close to the vest. It's no one's business, truly. No one needs to be involved in someone else's healthcare.
To be perfectly honest, all of the above reasons not to share go through my mind constantly. I hope that it's clear that my life is full of other topics & projects and other parts of my personality. I hope it's clear that it's informational and not 'woe is me'. I do often feel embarrassed. I sometimes will ignore symptoms because I don't want to face the reality of what those symptoms might mean. And I definitely worry about the potential consequences of sharing too much about my medical situation. I also agree that no one else needs to be involved in my healthcare.
So why do I share so much?
The short answer: because I would have appreciated knowing more from people who have first-hand experience.
I am not looking for sympathy, I am not looking for unsolicited medical advice. I am looking for understanding & I am providing information.
When I was first diagnosed with Inflammatory Bowel Disease, there was no Google. There was no Facebook. There were no readily-available support groups. In order to find out any information, it was pamphlets and papers, conversations with nurses and doctors, encyclopedias and dry definitions. Or you had to ask around.
'Hey so-and-so, have you heard of this disease? Do you know anyone who is sick? Can I have their number?'. Talk about awkward, and vulnerable.
No. When I first got sick, the terms "inflammation" and "chronic disease" were not in our vocabulary.
I share my experience so that others maybe won't feel so alone, and hope that the information reaches other people who have this so that I, too, don't feel so alone.
It's a live record of my medical experience and might act as an extra resource for others.
Even in one of my recent posts: "Why Are Medical Terms So Confusing?", I did the legwork of trying to unravel all of the conflicting information for my own understanding, but then shared it so that maybe it can be found by someone else who might be just as confused as I was.
As I was writing that post, I was wishing that someone had taken the time to explain it to me in that way. And if I was wishing that, then others must be as well.
Another important element is that by chronicling my experience, it puts into perspective that things are in constant motion. Opinions, thoughts, beliefs, diagnoses, medications, experiences, they all change and morph with time. Nothing is ever static.
Essentially it's me trying to help my younger self by providing information and a sense of hope, but without hiding the struggle.
It's me telling myself (and others): yes, you will suffer. You will have pain. You will struggle. You will also find joy, and love, and you'll learn new hobbies and learn to find the happiness in and around the struggle. You'll be okay.