How do you get Lupus?
Lupus is a genetic disease! It isn’t possible to catch Lupus from another person! You have to have genetic markers from your parents, as well as typically, an environmental trigger. Often it can be as simple as stress!
But you don’t look sick!?
hahahaha I’m not sure when the first time I heard this was. But I would just smile and say, ” Why thank you! I do look good today don’t I. How I feel inside may differ though!” I’ve always tried to be tolerant and open about the fact that most people don’t understand what a chronic illness really means. The more open I am with people who need to ask this question, the more people there will be who stop making assumptions.
What is a Spoonie?
Christine Miserandino wrote a piece called the Spoon Theory that gave people with chronic illness a way to verbalize or broach the gap to explaining our lives to an able-bodied person. I would say this is when we took power of the phrase But You Don’t Look Sick. She founded the movement by giving it a voice for all the other girls out there with Lupus. Since then it has spread to all chronic illness being helped by the understanding Spoon Theory. You can check out her site at Butyoudontl0oksick.com
What Is a Flare-up?
A Flare-up is the term we use to describe when our disease is affecting our systems. Though often a doctor will tell you that your disease “isn’t active in your system” this doesn’t mean that you are symptom free. I’ve had to learn those are two separate things. The term Flare-up is used by the doctor to describe that your disease is active in your system.
Most of us learn the difference in how our body feels (it takes time, patience), so that we are able to determine for ourselves when in a Flare (shortened slang for Flare-up). Doctors as well as the chronic illness community use a scale system when talking about Flares. i.e. Mini Flare-ups, Grand-Mal Flares, “the usual” flare, etc… Flare-ups, in type aren’t necessarily defined by all in a uniform fashion, so much that we as a community are trying to create words to describe something our society has never given us words for.
What is a Relapse?
See above about Flare-up. Essentially a relapse is the same thing except used generally for referring to MS instead. There are some subtle differences in what the diseases do when active in the system causing the difference in wording choice. Though Flare is acceptable for both.