Since I was given the official diagnosis, I have come to realize how very little most people know and really understand about Lupus and it’s affects on those who have them. Not to mention the fact that because of it’s complexity and all it can affect, IT IS DIFFERENT for every Lupie. You can’t compare one Lupie to another because they might not be dealing with the same things, the disease might not be affecting them in the same way. Each one of us has to listen to OUR own bodies and along with our doctors deal with what might work and not work for us based on the disease, the additional diseases that usually develop alongside or as a result of Lupus, the actual medical for Lupus or side-diseases or illnesses, and the side-effects of those drugs.
If you’re a Lupie, as tough as it sometimes is to deal with folks who simply just don’t GET this or take the time to educate themselves about what it’s really like to live with Lupus, you have to get to a point of being OK with not everyone understanding. Otherwise the stress alone, the pain of someone comparing you, yet again… OBVIOUSLY meaning they don’t get it…. and anxiety to WANT to be understood could be contradictory and not helpful for the condition.
If you know a Lupie…. just please either don’t really say much about something you don’t really know about, or take some time to find out a little more about what the person MIGHT be going through before you make some comment. Don’t compare them or bring up other Lupies…. if you didn’t know before, now you do… NO two Lupies are going through the same. Instead, if you want to be able to offer some support, just ask them about what THEY deal with in regards to Lupus… THEIR medicines and it’s side effects, etc. Since no two Lupies likely deal with the same symptoms at the same time… although some are pretty common, keep in mind symptoms can come and go with no to little notice and they vary from mild to life-threatening.
Keep this in mind: When talking to most Lupies, specially those still able to work (most Lupies will end up not being able to work and on disability) don’t really talk about all their symptoms or severity of those because they are afraid of how it will affect their job… or they have simply tried to explain what they are dealing with and unless you LOOK SICK enough, most of the time, most Lupies feel as though they’re not taken seriously… so they simply STOP trying to explain. Plus some don’t want to be judged…. told they’re weak, have low pain tolerance, it’s their imagination, or made to feel as if people believe they’re exaggerating…. some of these comments are a slap to someone who lives in chronic pain, which most don’t understand, and is already taking and pushing through SO much on a daily basis….. so it makes it easier to just simply push yourself in silence at least till you just simply can’t any longer. By the time most Lupies say and talk about their pain, exhaustion, or other symptoms, they’ve already gotten past what “average” folks would point out as severe pain or exhaustion, or whatever other symptom it might be they’re dealing with. Sometimes, unfortunately, it’s just easier that way on many levels depending on the support system you really have.
I’m writing up these posts in hopes to raise some awareness about what Lupus is and what it’s like to live with it. One of the worst things is to be dealing with something is so debilitating AND serious, and realize that MOST people have no clue just how debilitating and serious it is. Maybe some day we won’t have to worry about all this junk and we’ll just say, “I USED to have Lupus.”
A Better Me Day By Day 