By: Jenna Koors, LCSW-S
“I’m pretty sure you have Lupus”, said my doctor during my second visit to rheumatology in 3 months.
I was shocked. Dismayed. Sitting in the clinic office, staring at white walls that smelled of fresh bleach, my world was turned upside down with one very ambiguous statement.
For years, I had struggled with painful joints, unexplained inflammation markers, and chronic pains. In the precipitating six months of my appointment, I had so many debilitating symptoms ranging from feeling like my body had been dipped in burning acid with ice cubes being run over my skin, to widespread pain where I felt as if my eyelids were being stabbed with needles; a solid diagnosis was seemed inevitable.
“You likely tested positive for it in 2015”, he continued nonchalantly. “Oh, and by the way, you also probably have Fibromyalgia as well, since you are ADHD.”
Another bomb dropped. “I don’t understand. How can we find out for sure?” I finally managed to ask.
“Well, we don’t really. I just make my best clinical judgment. There is no one way to know if you have Lupus, or if it is another connective tissue disease for that matter. Many times when someone has connective tissue disease, one flare may look like Lupus. The next time it may look like Rheumatoid Arthritis. Then it can look like Lupus again later in life. The medical field doesn’t have a definitive answer, but it’s becoming more believed that all the connective tissue disorders are the same underlying disease, it just presents differently from flare to flare and person to person.”
I bet it’s about here in this blog that you’re wondering what in the world rheumatological disease has to do with neurological variations. But bear with me and I’ll get to the connection soon!
Anyway, as do many people who are diagnosed with a medical disability, I spent the following months in and out of doctors, gave so much blood it’s a miracle I have any left and cried myself to sleep nearly every night. The most disturbing aspect of the whole situation was that I had to make peace with the fact that I likely have a potentially deadly disease that may or may not show up on paper. Not to mention, be ambiguous and never present in one way!
During this same time of medical incapacitation, I was also awakening to the fact that I am Autistic and that my children are Autistic as well. I’ve known for many years that I am ADHD and Dyscalculic after two previous neuropsychiatric evaluatio