I was diagnosed with Lupus when I was 31. I was living in Los Angeles at the time and showed up at my doctor’s office with a rash, the size of a dime, on my face. After swimming in a pool at friend’s house, I swore I had ring worm, but after the doc ran some blood tests, he left this voicemail at my apartment:
VM message from the doc: “Hi Christine, its Doctor blah blah. Yeah, your test came back positive for lupus, but no big deal. I’m headed to Greece for vacation and we’ll talk when I get back.”
My first reaction was complete confusion. Little did Doctor blah blah know that a friend I was working with at the time, her mother had died from Lupus at 72. Imagine my heart in my throat as I could hear it pounding in my temples and ears.
When I moved back to Philadelphia from LA, I went to see a new doctor and told him of the discovery in California. He ran some blood work, a few times, and proceeded to say, “nope, don’t see it, I think you have more of a “Chronic Fatigue Syndrome.” Just for frame of reference, for those of you who watched The Golden Girls, on one episode, Dorothy goes through a ring of doctors then she finally gets diagnosed with Chronic Fatigue Syndrome, I guess it was the safest disease they could come up with that wouldn’t shock their 1980’s audience. They later did a bit where Rose thinks she has HIV, so kudos to them.
At one point, I had pneumonia for the third time in a year and could not get in to see my regular doctor, but the nurse was able to set me up with his partner. He looked through my file and asked me if I ever had rheumatologic blood work done. Of course, I didn’t know what that was and replied, “I don’t think so”.
According to my file it was evident that I did not have these tests done. Long story short, he ran the tests along with an MRI of my brain, which showed high ANA and RNA numbers. The MRI showed a lesion in my right brain matter. The report stated, ‘Least likely MS, most likely Lupus’. He sent my results and reports over to a local rheumatologist. I met with him and found him to be snide and aloof.
He proceeded to tell me that I ONLY had 6 points of the 11 for Lupus and he needed all 11. He then told me that I probably had Fibromyalgia, but “we all know that’s a bullshit diagnosis.” I went immediately back to my doctor and told him to give me the best, which he did. My current rheumatologist is wonderful and told me he only needed one point of Lupus to diagnosis. The bad news was yet to come, though. After his tests he told me I had Lupus, Rheumatoid Arthritis, Fibromyalgia and Osteoporosis.
When I look back on receiving those diagnoses, I remember how calm I was, because I didn’t have Cancer, because our society is conditioned in such a way that if you don’t have Cancer you don’t have any problems. What is not understood is that Cancer is also autoimmune. If we cure one autoimmune illness, say Diabetes, we cure Cancer. Maybe it’s not that simple, but it would be a start, but does our society really want to do that? When I started to research and look into my illnesses, I got angry. Which wasn’t helpful for my conditions.
When you realize you have a life-threatening illness, and its not Cancer, there are things you need to let go of. For me, I had to let go of my expectations of others. You tell people you have Autoimmune Disease with this look on your face of dread. Their reactions range from: What’s Lupus? To “But you can’t die from that, right?” I had to reel myself in and just “do me” as they say.
I had to learn to say ‘no’ and relinquish my FOMO (Fear of missing out), but most importantly, I had to redefine my idea of a “good time.” People thought I looked good so how could I possibly be so sick? Lupus is one of those “invisible” illnesses. You can’t see our scars because they are imbedded in our muscles, our tissue, and our bones. People think there are magic pills that heal, so why complain? I had to let go of anger and resentment.
The first thing I did was decrease my friend group. Those who had stopped inviting me to the party were the first to go. Don’t get me wrong, I still maintain contact, but from a distance and yes, I forgave them their lack of understanding.
I looked into exercise and stretches that would help with pain, I took yoga classes, and even painting classes to see what new hobby I could get into. What was so wonderful was this disease actually helped me find my way back to writing. Writing is the one thing I can do that helps me with anxiety, depression and even pain. I look forward, now, to going to bed and reading a good book and waking up in the morning and writing a few paragraphs for the memoir I am working on. In a way, I have Lupus to thank for that, it allowed me to see the joy in my surroundings.
I still must work at it. COVID brought on a whole new time of flare. The vaccine forced me into a flare like never before and later, COVID itself returned me back to that same horrific pain and fatigue. I’m back to the work, the work of surviving and the work of living with this terrible disease.