I’ve always heard people say something along the lines of “if you’ve lived with something your whole life, it isn’t so hard to accept it”. This phrase has usually come up in discussions about such devastating things as poverty, illness, blindness – you get the picture. I guess it makes people feel better to think that this statement is true, when the reality is that it is not.
I’ve had Systemic Lupus Erythematosus for so long that I really don’t remember what “normal” life was like. I started getting sick at age 2 and was finally diagnosed when I was 7, and we all know our memories of those early years are difficult to access (perhaps in deep psychoanalysis, but I neither have the time, money, nor inclination to embark on such an endeavor). So let me tell you, living day in and day out with this disease, even with no memory of what it is like to not be sick, is not easy.
For the past 18 years I’ve been relatively lucky, with no serious hospitalizations or flare-ups of the illness. I maintain my health with a minimum of medication, although if I go too many days without that medication I feel it. It is easy to gain a measure of confidence when you go so long without complications – to feel invincible – as if you can walk right up to the precipice and jump to find yourself flying instead of falling. With Lupus it always seems that it is at that exact moment, mid-flight, that everything changes and you begin to fall again. You can feel perfectly healthy one day and unable to get out of bed the next. Always you have Damocles’ sword hanging over you, dangling, threatening flare-ups, kidney failure, neurological damage, and a host of other problems. You never have power over your own health – the best you can do is take care of yourself and hope that things work out for the best instead of the worst.
This is what I wish most people were more aware of when it comes to knowledge of Lupus. There is no one state of being with this illness. We aren’t always withering away in our beds. We are strong, we are happy, we are living our lives as well as we can. And if we are very lucky, there is always someone at the bottom of the precipice to catch us.
Today is the last day of Lupus Awareness Month. Learn the facts by visiting the Lupus Foundation of America website. Pass it on.