I was equally relieved and petrified; on one hand, someone FINALLY took me seriously! I had a name for what was wrong with me, and I could learn to live with it. On the other hand, I realized I was just diagnosed with a deadly, incurable disease that is most well-known for being the butt of a joke on a medical drama.
Lupus is not a joke. There is no sugar-coating this disease, and how it’s affected me. Since my official diagnosis in 2008, I’ve received diagnoses of several overlapping autoimmune diseases, been treated for cancer, had heart surgery to get a pacemaker, and had a double mastectomy. Lupus played a role in all of that.
It has changed every single aspect of my life exponentially. It’s affected my entire body. At times, I’ve lost my hair, my self-esteem, and my dignity. I’ve walked with a cane. I gained 65lbs in 6 weeks due to high-dose corticosteroids. I’m infertile. I guess “exponentially” doesn’t really begin to cut it.
My marriage was also in the path of lupus’s destruction. Unfortunately, our vows of “in sickness and in health” weren’t strong enough to withstand the wrath of this disease. Lupus, and the changes that came with it, put such a wrench between the two of us that we divorced.
No one ever dreams of a life with a chronic illness, especially one that’s considered “invisible.” Lupus wasn’t my decision—I didn’t wake up one morning and think, Hey, lupus would be a fun way to spend the rest of my life. How can I get out of having babies, a career I’ve always dreamed of, and tropical vacations? Can I spend all of my money on insurance, copays, and deductibles?
You get my point. Life with lupus is not a cakewalk—some days are downright dreadful. But over the years I’ve learned it’s not all despair. Lupus has taught me to fight harder and to speak my truth. To be a voice for those who can’t. To advocate for more research and improved treatments.
My blog was started as a way to vent, but quickly turned into a passion. This small space of mine on the interwebs is here to show you all yeah, really bad shit happens that’s completely out of our control, but it doesn’t have to define you. I am NOT lupus.
Love you all,