Looking back on my life, I distinctly see times where I experienced lupus flares and remissions, despite a lack of a proper lupus diagnosis. The flares always involved a visit to some doctor, who inevitably could not find a reason for my mystery symptoms. One particular doctor declared I was depressed, even though I disagreed. Yet, this doctor sent me home with a month supply of antidepressants. She said, “I’ll give you your first month of drugs free”. I left there with my paper bag of drugs, feeling gross and icky, like I had just been pedaled by a drug dealer. I hastily dropped the bag of drugs in the closest trash can and chalked up another doctor visit as a waste of time. I would bet money that multiple doctors have written some form of “crazy” in my patient charts.
Flash back to the winter of 2005. I noticed some of my toes had a suspicious, purplish rash. My toes looked like I bruised them. After a week and the rash had not improved, I reluctantly made another doctor appointment, but this one changed my life. My primary care doctor took one look at my toes and started writing notes, then she said something I will never forget. She said, “It’s good that you came to see me about this. I’m going to run some test.” A doctor has never praised me for visiting them. I usually get the opposite feeling from doctors of, ‘oh you again, what is it now…’ But this time, my perseverance paid off.
A couple of days later, the doctor called me and said that I tested positive for lupus. What? (Pause for freak out…) The only thing I knew about lupus was from watching the movie Gross Anatomy, and the doctor who had lupus, in the movie, died from the disease. Still on the phone with the doctor I went into zombie mode as she explained that my blood test came back with a positive ANA (anti-nuclear antibody) and she was referring me to a rheumatologist.
Forward to my 1st rheumatologist visit:
I was an anxious mess, while I sat quietly, pretending to be calm and normal in the waiting room. I felt like a pressure cooker inside an eggshell, ready to burst into tears as I ran out of the building. Before the visit, I had diligently done extensive internet research about lupus. It all started making sense: the constant exhaustion, muscle weakness and pains, achy joints, chest pains, photosensitivity, skin rashes, etc. Lupus is an autoimmune disease, where the immune system attacks one’s own body. Despite my fears, I shamefully admit now that I kind of wished I did in fact have lupus. I know that sounds really twisted, but I was so desperate to finally have an answer to what was going on with my body.
Meeting the rheumatologist was a disappointment, unfortunately. It is highly probably she wrote “borderline crazy” in my patient chart. Imagine my shock when she didn’t want to diagnose me with lupus right away. (But my primary care doctor said I tested positive???) I couldn’t hold back tears as I shared with her all the symptoms I was experiencing. The rheumatologist explained it would take a while to see if I did in fact have lupus; extensive blood and urine tests were ordered. I learned that a diagnosis of lupus involves having symptoms of lupus in conjunction with a positive antinuclear antibody (ANA) test result. However, a positive ANA test alone would not necessarily confirm that I had lupus. I left there mortified and once again frustrated. I had no choice but to wait for the lab test results and a follow up visit with the rheumatologist.
So let’s discuss lupus symptoms and what I was experiencing. The following list is from the Lupus Foundation of America:
• Extreme fatigue (yes, unfortunately)
• Headaches (yep)
• Painful or swollen joints (check)
• Fever (no)
• Anemia (check)
• Swelling (edema) in feet, legs, hands, and/or around eyes (no)
• Pain in chest on deep breathing (yes)
• Butterfly-shaped rash across cheeks and nose (no)
• Sun- or light-sensitivity (photosensitivity) (check)
• Hair loss (no)
• Abnormal blood clotting (no)
• Fingers turning white and/or blue when cold (Raynaud’s phenomenon) (absolutely yes)
• Mouth or nose ulcers (occasionally)
Based on the above list, I had eight of the lupus symptoms. Those in combination with a positive ANA, was enough to diagnose me with lupus. FINALLY, an answer (mental cartwheels). As soon as I got this news, I phoned my mother. I distinctly recall saying, “I have lupus. Isn’t that great? I’m not crazy”. I have systemic lupus erythematosus (SLE), meaning it affects any of my organs.
I’d bet the majority of lupus patients have felt crazy more than a few instances. In addition, family, friends, and doctors have undoubtedly labeled lupus patients as some form of crazy, prior to a proper diagnosis. The intense frustration over medical test results showing nothing conclusively wrong, is enough to make you bonkers. Plus the elusive lupus symptoms threaten to drive you mad.
Let me be the first or the fifteenth person to declare, “You are not crazy”.
Lupus is often referred to as the “designer disease”. The reason being that each person with lupus experiences their own unique symptoms and complications. The challenges of one lupus patient may be completely different from another person with lupus. This is why it’s imperative you listen to your own body, you trust yourself, and you develop good rapport with your doctors. Most importantly, don’t give up! Persevere until you get answers. If you are diagnosed with lupus, you can live a long, productive, tap-dancing happy life.