Here are three myths about severity levels.
Even some of the best scientists, journalists, and advocates get tripped up by them.
Myth 1: range of severity
There is a misconception in some of the academic literature and mainstream media that there is a single severity level or a narrow range.
In reality, the range of severity is as wide as it is in HIV/AIDS.
The levels include almost asymptomatic, very mild, mild, moderate, severe, very severe, and dead.1
We know this because of disease progression, among other reasons.2 What disease you had when you were at the mild end, is what disease you still have.
Just as with HIV/AIDS, the disease starts to present its true colors after you worsen in severity. Just as with HIV/AIDS, unrecognizably different levels of severity are the same disease.3
You can start out at mild levels and progress to death. You did not switch diseases.
The range of severity is wide.
Related to myth 1: multisystem nature
A related misconception holds that the disease affects only one body system (or only a few symptoms). It implies that severe levels are "more of the same".
In reality, as you get sicker, the number and breadth of your symptoms increase. This increase covers a vast range and cannot be dismissed without dismissing the disease. It is salient and fundamental.
Just as with HIV/AIDS, many systems in your body are affected simultaneously. For example, it is not immune only, autonomic only, GI only, uro only, mitochondrial only, or vascular only (I could continue). It is all of those and more combined. 50 symptoms is not unusual.4
Multisystem nature is part of severity. Progressed levels are the same disease, but they are not "more of the same".
Most characterizations, even by sincere scientists, are of extremely mild levels at best and bear no meaningful resemblance.
The range of severity is wide. So is the range of multisystem nature.
Myth 2: severe vs. serious
There is also a misunderstanding about "severe" and "serious".
Just as with HIV/AIDS, sufferers at the mild end do not have a severe current presentation, but they have a serious disease.
Just as with HIV/AIDS, symptoms at the mild end provide false comfort and false direction to biomedical research.
Mild does not mean not serious.
Myth 3: the meaning of "mild"
Finally, there is a myth that mild levels are mild by normal standards.
Mild sufferers are mild by the standards of the disease, but they are often severe by a normal person's standards.
Consider the reverse
Consider the reverse. "Severe ingrown toenail" is severe by the standards of that disease, but it is usually trivial to any person with a sense of proportion.
As strange as it sounds, specialists in podiatry are right to call it severe. It is severe compared to mild levels. They need to acknowledge the range of severity (even though it is narrow in non-gangrenous cases).
You might also consider severe dandruff or severe paper cut. You can trek across Antarctica.
Now back to our case
Now back to our case. Mild sufferers of this disease are severe to any person who is not misopathic, but they are mild by the standards of the disease.
As strange as it sounds, we are right to call mild sufferers mild. They are mild compared to severe levels. We need to acknowledge the range of severity.
The range of severity is wide, so all of us have to call mild sufferers mild.
Otherwise, whoever we are talking to will assume that is as bad as the disease gets.
The range of severity is wide, so this means he or she will assume an extreme falsehood.
Many sufferers at the Very Mild level can't leave the house half the time. Very Mild is bad.
It is nothing in comparison to when they get sicker, but that does not mean that mild sufferers are mild by a normal person's standards.
I made three points:
- The range of severity is wide
- "Mild" does not mean not serious
- "Mild" means mild by the standards of the disease
They possibly include aysmptomatic also, just as HIV-infected people can be asymptomatic. They are readily distinguishable.
For example, co-occurrence in clusters or relapses/remittals at different severity levels can also suggest the range of severity.
Newcomers: just as with HIV/AIDS, you cannot tell from your symptoms at the earliest stages what disease you have. Only after you get sicker can you be more certain. When serious biomedical research starts being funded, we will get our widely-deployed equivalent of an HIV test. Just as with HIV/AIDS, this will not happen without far stronger and far more concerted political action than we have ever taken.
But not at mild levels. The surprise that many people show upon hearing about it illustrates the need for education.
No sufferer should ever be unaware of — or dismiss — other severity levels than his or her own, whether milder or more severe.