Natalie's story

My name is Natalie and I'm 40. I'm one of the lucky ones. I was diagnosed early.
I think the thing that most people don't realize about Lupus, is the myriad of satellite ailments, that come along with it. It's never JUST Lupus. For me, its Hemolytic Anemia, Anti-cardiolipin antibody syndrome, Anti-phospholipid antibody syndrome, Reynaud's Phenomenon, Fibromyalgia, Sjogren's syndrome, Seizures, Congestive heart failure, chronic Pericarditis, and 'unspecified' anxiety disorders.
When I was told that my anti-anxiety drugs were were interfering with my Lupus drugs, I had to stop them. It wasn't long before working became a source of daily terror, for me. My doctor tried to get disability for me, on the basis, of Lupus, which was, by far, my most serious medical complaint, but I was rejected. I finally ended up getting accepted, on the basis of my anxiety disorders.
Since that time, which was in 2000, I've had a heart attack, 2 strokes, several bouts of pericarditis, all of which have had ties to Lupus, and many flare ups of Lupus that have required treatment.
I find it frustrating, and a slap in the face, that Lupus isn't considered a serious enough illness that we cannot get disability. Flare ups are brought on by stress, fatigue, sunlight and allergies. Lupus can affect our skin, our joints or brains, or a combination of any of these. Lupus started in my joints, and has now moved to my brain.
Life with Lupus is difficult. Trying to get through each day, struggling with the knowledge that you can't get disability for a disease that can kill you in a heartbeat, is devastating. It can take years, to get a definitive diagnosis, of Lupus, because of the confusing array of symptoms. So, after years of suffering, with the not knowing of what is causing your pain, and numbing fatigue, you get a diagnoses, and hope to finally get help from disability insurance. Not a chance.
So, we're left to rely on our satellite illnesses, to find our way to relief. I just feel like stamping my feet and shouting, "Its just not FAIR!" for all the folks who are still trying to get disability, and are still getting turned down. I understand where they're coming from.