This is a four part series that will be published throughout July 2020.
As I left the doctor’s office last week, it was nearly impossible for me to hold back the tears that were welling up in my eyes, threatening to drip down my face…in public, no less. I kept telling myself that fighter pilots don’t cry in front of people, that we are tough, and that we must keep a stiff upper lip. I was somewhat comforted by the fact that any tears that might flow would be absorbed by the face mask I was wearing due to the necessary precautions of the current COVID-19 pandemic. Those tears were not appearing for the reason you might be expecting. I did not receive some life altering diagnosis and I had not received any bad health news. In fact, it was arguably the most memorable and productive doctor appointment I’ve had in years. So, why the tears?
You see, the reason I was feeling palpably overwhelmed with emotion was because this particular doctor, a gastroenterologist, had just spent about a half an hour of her time actually seeing me. I don’t mean going through the motions of what has become the all too common, often transactional and time-constrained, modern day, medical appointment. I mean that she really saw me. She welcomed me to her office with a profound grace, as if I was the most important patient she had witnessed in years. Her questions demonstrated tangible compassion and an avid curiosity about the reason for my visit. She asked about my symptoms without interrupting me, took copious notes as I spoke, and not once did I feel her rush the conversation towards its inevitable end.
And then the moment came. Yep, that moment. The moment I dread every single time I go to a medical appointment, where she understandably had to ask about any significant past medical history. I immediately squirmed in my chair, my discomfort unmistakable, and I let out an audible sigh of defeat. Yes, defeat. I don’t know what other word to use to describe it. I’ve been in this position too many times before and I know how this usually ends. These appointments can so often culminate with some level of disbelief by the medical provider, sometimes a noticeable suspicion of my motives for being in their office, a look of “this is too complex for me, please dear Lord get me out of this,” or at its worst, a complete and overt condescending dismissal of my everyday reality.
I have lived with a life changing, and life altering, Invisible Illness for roughly the past 8 years. When you look at me, I look ‘fine’. By all outward appearances, I look to be a physically healthy and fully functioning middle-aged woman. But, I am not ‘fine’. In fact I’m far from it. As someone who lives with an Invisible Illness, every single day is a balancing act between what my body and mind can and can’t do at that very moment. If you want me to quantify it (as doctors so maddeningly always do), I am able to accomplish about 50% of my old activities on my very best days today. My old self is gone, forged into this new human being who is trying to do her very best with what she has.
Each of my actions is a tradeoff between what I choose to show the world or not (do I wear make-up and force a smile today?) and what priorities I can juggle versus let fall (should I go to the grocery store or work on my home-based business?) My Invisible Illness means fully letting go of my old self and accepting the reality of my current capabilities (since I can’t read well anymore, I guess I’ll switch to podcasts). How do I reinvent myself today — do I take another Zoom business meeting with a potential client or do I concentrate on some form of self-care? How do I choose what to prioritize today — a shower or a nap? How do I get this poor gastroenterologist , bless her heart, to understand, accept, and believe what I have to manage daily: chronic fatigue, persistent joint and muscle pain, neuropathy, executive cognitive dysfunction, autonomic nervous system dysfunction, and a balance deficit…just to name a few.
I summarized my 8-year medical odyssey as best I could for her. I explained, as efficiently as I could, my Invisible Illness and its current symptoms, and I finished by describing the new symptoms which had brought me to her office. To my surprise her eyes had not glazed over, she had not lost interest in the details of my story, and she met the end of my minutes long, mini, verbal-novella, with a profound statement. She said, and I quote, “Thank you for educating me on your illness, you have absolutely taught me something new today about your prior diagnosis and I’m grateful you’d share that with me. You are certainly enduring a lot each day, so let’s see if I can relieve you of some of that burden.”
Wait, what just happened?!?! I felt like I had entered the Twilight Zone, but in a good way. Angel harps played music in my head, the light of the sterile examination room appeared as a halo above her head, and I imagined her as some sort of magical unicorn. In that moment, she had lifted a huge weight I’d been carrying all alone for years, she removed any shame and embarrassment I had let my Invisible Illness bring me, and she gave me back my medical and healthcare dignity… all of which had been stripped from me many years ago. She made my Invisible Illness visible… she saw me. You see, I left that gastroenterologists office last week with tears in my eyes because a medical provider chose to see me. In just one doctor’s appointment, I had regained a long lost superpower; I had become visible again.