I've seen some others in the chronic illness community doing this, so I wanted to do one of my own.
When most people hear that someone is sick, they think of someone stuck in bed with a bad cold, or the flu, and that after some rest and OTC meds, they will go back to feeling normal soon.
Though that is true, there is still a lot of ignorance surounding chronic illnesses. In my experience, when an someone unfamiliar with chronic illness hears that someone has one, they think that after a few trips to the doctor, diet and exercise changes, and some natural remedies, that the person will be feeling better, and just have an off/bad day every now and then. Oh, how I wish it were that simple... Another part of the ignorance that comes with chronic illnesses is that nearly all of them are also considered invisible illnesses, meaning you can't physically see by looking at a person that something is wrong.
When I post about being in the hospital for days, weeks, or even months, and upload pictures with tubes and wires and medical devices all over me, more people then do seem to get it. They send love and constantly check in, to see how I'm doing. But, once I am back home, and post pictures of me smiling, enjoying outside, visiting friends and family, etc. they assume that things are much better, and most lose contact, or comment on how great I look, and say that they're glad that I'm better.
Yes, if I'm not in the hospital, then I am not having some severe, medical crisis, but I am not, nor will I ever be "better". These illnesses are for life. Rather if I'm in the ICU, or goofing around with my nephews, I am affected by my illnesses every waking second of every day. I have not felt okay in years. Every action that I do comes with a price. My life expectancy gets a shorter estimate every few months. Most doctors won't see me, because I'm too severe for them. No amount of upbeat looking pictures will change that.
Some days are decent. Most days are bad. Some days are complete shit. What I choose to post on social media does not give a 100% acurate description of what is going on with my body, mind, and life. Only I truly know what I experience.