Songbird66
Diagnosed at 21

What do you want others to know about lupus?

I WAS DIAGNOSED WITH S.L.E. WHEN MY SON WAS JUST 5 MONTHS OLD --- I DID NOT HAVE ANY IDEA THAT I WAS SICK AND DYING - BUT FORTUNATELY FOR ME I WAS LATER BLESSED BY GOD WITH GREAT MEDICAL SUPPORT... LUPUS DEMANDED THE ATTENTION OF MY LIFE FOR NOT QUITE AN ENTIRE YEAR BECAUSE I HAVE BEEN IN REMISSION FOR OVER 20 YEARS NOW...

Why is lupus a cruel mystery to you?

AT THE TIME THAT I WAS SICK, OR, IN TRANSITION FROM BEING DIAGNOSED, TREATED AND IN REMISSION, I CAN SAY THAT IT WAS SCARRY - BECAUSE I HAD NO IDEA WHAT IT WAS, OTHER THAN A STORY I READ IN ELEMENTARY SCHOOL ABOUT A TIME IN ENGLAND WHEN BOYS BORN WITH LUPUS WERE KILLED BECAUSE OF THE TOIL AND SHAME ON THE FAMILY AND THE CHILD...THE ONLY IMPACT IT HAS HAD ON MY LIFE IS THAT IT HAS SLOWED ME DOWN ALOT FROM MY DAILY ACTIVE LIFE THAT I HAD KNOWN BEFORE I GOT SICK... I WAS CHANGED FROM BEING INDEPENEDENT TO DEPENDING ON THE HELP OF MY FAMILY TO GET AROUND AND DO THE THINGS THAT I NEEDED TO DO... MY SON NEVER KNEW THAT SIDE OF ME (THE ACTIVE AND INDEPENDENT ME)... NOW HAVING TWO GRAND-DAUGHTERS, I ALWAYS HOPE AND PRAY THAT LUPUS NEVER DARKENS THEIR DOOR... JUST LIKE I HAD MY SON CHECKED WHEN HE WAS BORN... IT FEELS GOOD FOR ME TO SHARE MY STORY NOW, AFTER YEARS OF DEBATING ABOUT IT BECAUSE I ALWAYS FELT LIKE I CHEATED DEATH AND WOULD JUST BE A THORN IN THE FLESH OF THOSE WHOSE STORY ISN'T LIKE MINES... I REALIZE THAT MANY HAVE DIED OR HAVE LOVED ONES WHO HAVE DIED FROM THIS DISEASE, YET, I HAVE NOT... I DON'T TAKE THIS LIGHTLY, AND I PRAY FOR THEM, THAT GOD WILL DO THE SAME THING FOR THOSE WHO ARE SURVIVING....

Support this Voice