Lupus is an auto-immune disease.
It is a problem with your immune system.
Your immune system is there to help you fight off infection and disease. It is a good thing, your body's natural defense mechanism.
Not being a scientist or a medical professional, I do not understand the scientific mechanisms for how the immune system works, so this post will not be written in fact; it will be written in allegory. And I might be all wrong. But it might also help you (or someone else) understand a little bit more about lupus.
Here's a one-two-three look at ways the immune system can behave in your body:
(1) Infections and illnesses
The immune system can guard your body against germs (viruses and bacteria) that make you sick. For our purposes, we are going be unscientific and call these bad guys germs: they're the stuff you don't want in your body. We are discussing germs first, because germs are universally bad. Some people are more susceptible to them than others, but germs are bad for everybody.
When germs get in, your immune system kicks into action to throw them back out, or to kill them on the inside.
A fever is the immune system's reaction to try to "cook" germs out of our bodies, to raise the body's temperature to a point where it is hostile to the germs' survival, so they will die.
Coughs, sneezes, runny noses and the flowing of phlegm are another tactic the immune system uses to try to wash germs out of our membranes. Juicy secretions form to carry toxins out of the body.
Vomiting and diarrhea are, likewise, the body's attempt to rid itself of toxins.
These immune-system responses are often misunderstood, and people believe that they are the problem, the illness itself. Actually, they are signs that the body is trying to fight off the illness. People often strive to shut down immune-system responses because they can be uncomfortable. However, the art of medicine lies partly in knowing when to shut them down, and when to allow them to do their work. However, there can often come a point in an illness where the immune-system responses begin to do more harm than good, as when the phlegm of a cold sets into the lungs and becomes an infection: pneumonia.
It's all interconnected and very complicated. But at the end of the day, our immune systems are in place to help us fight off illnesses.
(2) Allergies
When people have allergies, their immune systems react against things called "allergens." Unlike the (~very scientific~) germs we discussed above, allergens are not necessarily bad for all people. They can be things like pet dander, plant pollen, dust or grass, or even things like milk, eggs, latex, seafood or certain types of medicine. What is an allergen for one person could pose no problem at all for another person, and might even be good for someone else.
However, when you have a reaction to an allergen, your immune system is identifying it as something bad (like a germ) and attacking it. Hence, you get symptoms. Ragweed pollen makes you sneeze. Latex makes you break out in a rash. Shrimp makes you vomit. In order to avoid the symptoms, you try to avoid the allergens.
Allergies are a misappropriation of the immune system. It attacks inappropriately against a substance that really ought not be a problem. Unfortunately, the immune-system response can be very acute and unpleasant, so the two ways to guard against allergy symptoms are to avoid the allergen, or to somehow shut down or slow down the immune-system response.
(3) Lupus
In lupus, the immune system is also acting up, similar to the way it does with an allergy. However, unlike with an allergy, there is no allergen. In lupus, the immune system has decided that the body (or one of the body's systems) is the enemy to obliterate. Yes, the immune system goes on attack against the very body that it is supposed to protect.
You know how you can avoid allergic reactions by avoiding allergens? You can't do that with lupus. You have only one line of defense once a flare begins: shut down the immune system. (Incidentally, people used to die rather quickly and regularly from lupus before it was understood how to disarm the body's immune system.)
This is why it is so very important, in lupus, to try to keep things from flaring. You don't want to attract the attention of that immune system. It's a rogue immune system. Imagine a well trained group of soldiers, and then imagine that they have been destroyed and replaced by a pack of wild wolves. That's sort of what has happened to the immune system of a person with lupus (maybe that's why they call it lupus). When something starts to go, those wolves are on it as though they are chasing down a wounded deer. As the immune system rages on, it produces symptoms like joint pain, fever, nausea, vomiting, diarrhea, tightness of the chest, difficulty breathing, swollen glands, sore throat, cough, rash, itching, hair loss, and much more. The best we can do at this point is try to shoot the immune system with a hypothetical stun-gun and put it to sleep for a few days, hoping that in the meantime the symptoms will abate (the proverbial wounded deer washes in the stream and finds a clean, safe bed to rest in), so that when the immune system wakes up again, it will be groggy, forget about its prey, and continue to cease and desist in its attack for awhile.
Obviously we can't live our lives with our immune systems shut off. Well, not for very long at any rate. Treatment for lupus involves low doses of medications that lightly suppress the immune system (like plaquenil), coupled with more complete immune-system blockers (like prednisone) for when things get really bad.
A cure for lupus would involve figuring our how to re-regulate the immune system so it would respond to appropriate stimuli and leave the poor body alone.
In the meantime, please be understanding of your friends with lupus if they do things that seem weird (to you) in order to avoid a flare. Believe me. They have been through some pain and discomfort. They aren't trying to be difficult. They'd like to eat the things you eat, go the places you go and do the things you do, more than anything.
Here are some things you should encourage (and never mock) in your lupus buddies:
Early bedtimes
Gluten free diets
Anti-inflammatory diets
Gentle exercise
Avoidance of extreme hot or extreme cold
Stress reduction
Gentle lighting
Gentle sound levels
Simple schedules
Limited outings
Avoiding contact with lots of people, especially if some may be ill
Hot tea
Lots of love and understanding
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