Perception of Seriousness

I was having a lengthy discussion with someone today about the entire topic of chronic illness.
This is an umbrella term for thousands of illnesses that span across countries, ages, all walks of life, all organs, and can have an effect on absolutely any person at any given time. These illnesses have no known singular cause nor do they have a known cure.
Yet, we were trying to pinpoint why these illnesses are sometimes not exactly taken seriously.

I see memes and comments online every day-
"I spend 75% of my time pretending that I don't have a chronic illness, and then 25% of the time trying to prove that I DO have a chronic illness to people who don't believe me."
It's true. We want to do everything we still want to do, and our diseases are often invisible anyways, so we pretend to be healthy out in public to blend in. But then when it comes down to receiving treatment and being taken seriously, we have to somehow prove to others that we do, in fact, suffer from an invisible disease that can only be seen in bloodwork and scans and medical charts and physical assessments.

On one hand, I don't think many people, who are even remotely educated on the prevalence and various types of chronic illness, would ever dispute the fact that these illnesses can be terribly severe, can create an all-encompassing disruption of one's life, and can even be fatal.
On the other hand, there seems to be a disconnection.

For instance - someone breaks a bone and cannot participate in a sport. That person is often visited in the hospital or even the emergency department by friends. Friends may even come over to their house to help cook or clean or help them be mobile.
Now, we all know and comprehend that a sports injury like a broken wrist or a sprained ankle is not as serious as a chronic illness like rheumatoid arthritis or lupus, and yet it often seems as though sports injuries are treated as if they are a more severe injury.

I think the problem is that chronic illness is in the middle of every kind of scale on which we rate severity. Chronic illness often lacks that 'immediacy' that comes with freak accidents and sports injuries. Although the life disruption and changes to a routine ARE drastic, it is usually over the course of weeks, months, and even years, as opposed to a split-second injury or a quick contraction of an illness that requires immediate attention to cure. You cannot be sitting and waiting with that high-intensity adrenaline that comes with an immediate injury for weeks on end, so your body and your mind have to adapt (to this new injury in the organs, to this new severe pain that won't subside - the same level of pain as a broken arm but without the ability to fix it - to this new normal) and so you are better able to process - which can be viewed as less intense, and therefore, less severe.
Even when that is not the case.

Okay so what about the other side of the coin?
While it is true that chronic illness is not commonly known as terminal, these horrifying illness have SEVERAL moments where one random evening can become an emergency situation, and drastic interventions need to occur.

When you hear the word Cancer, a person automatically assumes it is a death sentence. That mindset has not faded. It often includes deadly medications and a time limit. Immediacy and terminal. It is the worst of the worst.

Chronic illness is not at that end of the spectrum either.
But there is one thing that I believe gets glossed over. Did you know that every single year I wind up in the emergency department, legitimately fearing for my life, and requiring intervention, multiple times? On nights when I am dealing especially with swelling in my throat, while it is not as fast as anaphylaxis, without intervention that swelling would progress until my airway closed. Or what about those dozens of episodes of Pancreatitis that had me hospitalized several times and disallowed to eat for several days? Pancreatitis can easily become a fatal situation, and requires emergency intervention. Then there was the emergency large bowel removal. I was losing so much blood that my large bowel was killing me. I was admitted immediately and surgery was planned and executed within days. Or the stomach bleed I had from certain medications. Or the 8-hour vomiting fits that resulted in severe dehydration, again requiring hospital intervention. This doesn't even include all of the severe and frightening massive allergic reactions to various medications.
These trips to the emergency department by chronic illness patients are not wasted trips. These are very common episodes which nearly always require immediate hospital intervention. These illnesses can create such severe complications that, without intervention, these patients die. Their illnesses force them to rely on medications, some of which cannot even be accessed at home.

A fairly large issue is that many of these illnesses are invisible. While they do cause disability and problems with mobility, it is not always final. It is a rollercoaster and ever changing. A person who gets into an accident and becomes disabled is that way (usually) permanently. Or more permanently than someone with Ankylosing Spondylitis, for example. On one day I could require the use of my walker, and yet on another day I could be walking normally wearing heels! While these days I use my cane about 70% of the time, you will also see me out without it as well. Some days are worse than others. With Crohn's it is the same thing -> one day I could be doubled-over in pain, incapable of leaving the bathroom floor, and two days later I could be out having dinner and maybe even a glass of wine out with friends.
These illnesses are wildly unpredictable, and without being able to see the amount of pain we are in or not in, it can be seen as false. A good friend used to describe it to me that, over the course of a day, it looked as though I was being slowly poisoned. I would often start off with a lot of energy, walking tall and without limping, and laughing. A lot. But then, as the minutes to hours went by, my posture would change, my face would become white or greenish, my eyes would turn dull, and I could not stand up straight or walk without a pronounced limp. I felt that this was a great way to describe it. Similar to the spoon theory - we can begin a day or an evening out with fervor, but the longer we stay and the more we do, the more our bodies fail us.

So, as we were discussing these predicaments, we were trying to find answers.

Is it because these 'episodes' and trips to the emergency department are so frequent, and are considered a 'normal' part of suffering from a chronic illness, that they do not seem to be taken seriously?

Is it because on one day a person could be on death's door, and yet two days later they may look as if they are in the best shape and health that they have ever been?

Adding to that, is it that people see us one day needing to use a handicap parking permit, but another day can walk half the length of a parking lot and are not using a handicap placard?

Is it the lack of immediacy?

Is it the fact that, with treatment, they are not considered terminal? So even if they require life-saving treatment, at least they can access that treatment?

Is it because the progression of these illnesses can span years and will last for an entire lifetime? Is it perhaps simpler to not necessarily ignore, but place the spotlight on these illnesses on the backburner?

Is it just too much to expect the same level of emergency thought several times a year for the same illness every single time? Does it become a nuisance?

Or is it mostly because of the tragic and uncontrollable variability in how each person suffers from the same disease?

I think that it is a combination of everything, but that last sentiment is definitely a larger obstacle. It is beyond difficult to convince people, who do not suffer from a chronic illness, that every person with the same disease will have an entirely different experience. How can that be? That is tough enough for the sufferers to wrap their heads around.

So with an illness that does not have that immediacy of an emergency at all times, an illness that lasts the entirety of a person's lifetime, an illness that is not terminal, an illness that looks different in each person who suffers from it, and an illness that is virtually invisible, how are we supposed to get the concept understood that these illnesses ARE serious, CAN kill, and are just as drastic and cause just as many monumental life changes as the next disease?

Anyways, just some thoughts to ponder.