I don't know any individual who genuinely WANTS others to see the 'behind-the-scene' struggle with pain.
There is a significant difference between seeing someone at their worst and really watching someone experience the worst symptoms.
Explaining severe symptoms is MUCH different than actually experiencing those symptoms and helping someone through an episode.
There are many signs that can be visibly noted - drastic weight loss or weight gain, change in posture & energy levels, pale & sickly-appearing skin, sunken eyes, hollow cheeks, mood changes, and seeming constantly exhausted. Although these signs allow an outsider to catch a glimpse of what it might be like fighting chronic illness, it is still very different from really seeing it. Even the aftermath of an episode - like bloodshot eyes, a general appearance of looking 'green', or even tears - is still nowhere near what it means to see it DURING the episode.
Until you are with me - attached at the hip - and see every step that is involved in doctor's appointments, procedures, treatments, IN that ambulance, IN the room for bloodwork, holding my HAND in the emergency room, helping me get dressed, watching me try and do housework, feeling me shake while walking, helping me get from a wheelchair in order to go to the washroom, helping me WALK out the door to an ambulance - it is impossible to fully empathize and understand the situation.
This is the part of my life that I do not openly share with many people. It is one of the reasons why I have always gone alone into appointments.
Until you are right there, in that moment, by my side, it is impossible to fully grasp the toll that it takes on someone's life and mind and body to battle these illnesses.
Like most experiences, you don't KNOW what it's really like until you go through it yourself.
In order to empathize, you need to really SEE each step, each pre-episode warning, each episode symptom, and every minute of the aftermath for DAYS.
It is like trying to capture a picturesque night sky from a phone camera. What appears in the photo is NOTHING compared to what your eyes experience.
There is no real way to accurately detail one's personal experience.
That is why there are so many descriptions and metaphors and similes and detailed stories & pictures - it is all in an effort to try and relate our experiences with the experiences of others.