I had at epiphany at my last doctor’s appointment. Sitting on the cold, crinkled paper covering the lumpy bench, I was in awe that my neurologist was actually addressing me. He would usually only speak to my mother as opposed to asking me questions directly. He asked me how I felt after my last round of testing, and as I started to respond, he walked straight out of the room. I was in absolute shock at how little this person who was supposed to be helping me cared about my opinions regarding the state of my own health. In this moment, I realized what I was missing.
It is time that patients are seen as people. We deserve to be treated as humans, not lab rats or experiments. Many doctors see patients with invisible illness as a challenge or a puzzle. They want to find the problem regardless of how they do it, claiming the ends will always justify the means. What the are ignoring is that there are complex, beautiful lives behind their patients. We have families, friends, jobs, loves, and passions. There is more to us than our illnesses, and it is insulting to only be seen for them.
Of course we want to find what will help us live happier and healthier lives, but our doctors need to recognize how exhausting our realities are outside of the doctors office. The endless appointments, the waiting for test results, the good days and the bad ones, the pain. And this only covers the physical component. There is also the mental isolation, the overwhelming confusion, the lost friendships, the never-ending FOMO (fear of missing out) from checking social media in a pain-induced haze. And that’s the part many doctors fail to recognize.
Don’t get me wrong, so many doctors and researchers do so many amazing things for the chronic illness community. Without these pioneers, I probably wouldn’t be writing this. There definitely wouldn’t be a forum like The Mighty. But we need to stop treating invisible illnesses like riddles to solve. We need to stop ignoring the people underneath the diagnoses. We need to continue down a path of understanding and compassion.
So, to all the doctors brave enough to conquer the task of helping patients with chronic and invisible illnesses: ask yourself how you would want to be treated if you were in our position. Because, just like there is more to you than being a doctor, there is more to us than being a patient.
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