Lupus is not a universally fatal disease. In fact, today with close follow-up and treatment, 80-90% of the people with lupus can expect to live a normal life span. Lupus does vary in intensity and degree, however, and there are people who have a mild case, there are those who have a moderate case and there are some who have a severe case of lupus, which tends to be more difficult to treat and bring under control. For people who have a severe flare-up, there is a greater chance that their lupus may be life-threatening. We know that some people do die of this disease and because of that we have a tremendous amount of respect for the potential of this disease. However, the majority of people living with lupus today can expect to live a normal lifespan. People frequently read in the literature that, 80-90% of people with lupus live for more than 10 years. Unfortunately, this is often misinterpreted as people with lupus live for only 10 years.*
"How long do I have?" This was one question I never thought to ask after being diagnosed, it really never crossed my mind. Its not that I think I'm invincible, its because I am a fighter. I've never been the type of person who just lets things happen to me or let the situation control me. Letting things ride isn't something I'm good at.
For me, this outlook on life started very early on. There was a time that I had absolutely no control over my situation, surroundings, or anything else. I can't say when it happened but something in me said "No more". I decided that I needed to make my own fate not the one that was being handed to me.
My approach to Lupus has been exactly the same, tell me what I can't do and I'll show you that you're dead wrong. I've been told for many years due to the severity of my Lupus that I shouldn't work. I should apply for disability and stay home. Why? Yes there are times when my body says "No way sister, not today", but for the most part if I can move I am going to work. Admittedly there have been times when I've made serious errors in judgement when it comes to going back to work to soon from surgeries or after a 4 hour chemo treatment. Thankfully those times worked out without to much damage to being done to me in the long run.
"How long do I have?" , is still not a question I will ever ask. I don't want to spend my life living for the day that my number is up. It would definitely have a negative impact on how I live my life and how I feel about life. I feel up to this point I live with a purpose and a zest for life. All life is finite, I could walk out the door and get hit by a bus or I can live another 40 years.
None of us know, whether we have Lupus or not, what is in the cards for us. I never want to waste a moment of life thinking about how short my life could be. Even when I am unable to move, I can still interact with my family, read, listen to music, and talk to my friends around the world. Its the quality of life not the quantity that makes a difference.
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