“Yes, It certainly looks like you have lupus.”
I daydreamed about this exact moment many times before it ever happened, yet somehow it still came as a shock. After years of mystery, I thought a confirmed diagnosis would bring feelings of relief, validation, and maybe even some hope. Imaginary me engaged in a calm, informative conversation with my rheumatologist upon being diagnosed. Imaginary me asked many questions I thought of ahead of time and even had a notebook and pencil handy to record helpful information.
Reality proved to be very different. As soon as the word lupus left my Dr.’s mouth, I felt numb and wanted to get out of the office as quickly as humanly possible. To speed things up, I started nodding my head. I nodded as the Dr. explained instructions for medications I couldn’t pronounce and possible side effects that would have scared me if I were paying proper attention. I nodded as he verified my pharmacy and booked my future appointment for even more bloodwork. I’m pretty sure I was still nodding as I rode the elevator by myself down to the parking lot.
But when I got to my car, I cried. A lifetime of stress, fear, and anger poured out on the dashboard.
The Reality
Approximately 24 million Americans currently live with autoimmune diseases such as lupus, rheumatoid arthritis, and multiple sclerosis. In other words, 24 million people can relate far too much to the average episode of House. We’ve felt like walking medical mysteries, longing to find a Dr. who will take us seriously. In our personal lives, we have been unfairly treated as hypochondriacs or maligned for breaking plans more often than we would like.
I am almost certain that all 24 million of us have questioned our own sanity and perception of reality. Am I really sick? Are my fingers really as swollen as I think they are? What if the way I’m feeling is the same as what a healthy person feels but I just feel it more acutely? What if this really is psychosomatic? ::shudder::
The road to a diagnosis can be long and difficult. According to the Autoimmune Association, it takes an average of 4.5 years and 4 different doctors to receive a diagnosis. An incredible amount of time, money, and vials of blood are involved in getting to the truth. Sadly, not everyone has the resources necessary to pursue consistent medical attention for years.
Moving Forward
For me, receiving a chronic illness diagnosis feels both like an end and a beginning. It is the end of questions like, “Will this Dr. believe me,” and, “Can’t anyone sleep for 16 hours a day if they wanted to?” It is a catalyst to finding a support group, changing my diet, and giving myself more grace in the midst of the really hard days.
The questions don’t go away. Sometimes I feel like there are more now than there ever were before. Autoimmune diseases vary so much from person to person. It is impossible for me to look at someone else who has lupus, and conclude that my battle will look like hers. Our triggers may be different, our optimal diets may be different and our flare-ups will manifest differently. The trial and error of finding what works best for my body is nothing short of exhausting. But, having the framework of a diagnosis is still incredibly helpful.
If you are going through the process of diagnosing a mysterious illness, take heart. Keep pushing forward even when you feel like giving up. Keep doing research and document your symptoms. Take pictures. Keep records. Advocate for yourself the way you would advocate for your children.
If you’ve been recently diagnosed, breathe. Cry. Grieve. Grieve the life you imagined and celebrate the life you still have. You can do both simultaneously because hope is not lost. Millions of people have been where you are now. It’s still difficult, and there are still so many questions, but we are no longer living an episode of House.
Oh my gosh this is so good Jess 😢
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