When I Tell My Uber Drivers About My Chronic Illness
This is a story about Uber drivers. I will not be going into the politics of the sharing economy. I leave that to policy makers and entrepreneurs. I will instead talk about the heart and compassion I have witnessed in my Uber drivers, and what this has meant to me as someone with a chronic illness.
By nature my chronic illness is complex. ME/CFS (chronic fatigue syndrome) is something many people have heard of, but so few fully understand. To start, its name is wildly misleading, describing only one symptom of what remains a multi-systemic and debilitating neuroimmune disease. Because of this lack of awareness, when given the opportunity (and more importantly the energy) I will happily share my experience of living with the disease. I see this as my form of advocacy; as a patient population who largely do not have the capacity to get out of their houses or beds to conduct traditional advocacy, often a simple conversation is our only chance.
So, on more than one occasion I have shared with an Uber driver about my illness. Often this is simply because they have asked how I am, and I am not quick with a ready lie about how fine I am, how everything is great, and how I am just off to do normal people things, with completely normal energy thanks! And so I find myself telling the driver about the multitude of symptoms I experience daily, about how I recently had to resign from my job, how I feel exhausted every minute of every single day. I share about the totality of the loss of functioning ME/CFS can inflict and how it has derailed my life. I apologize for the short ride, explaining I can’t walk a regular distance, and how Ubers at least afford me some freedom to leave the house.
And the truth is, every time I have shared my story in this way these drivers have been the perfect listeners.
They have been curious, understanding and courteous. They have expressed concern and dismay. They have attempted to understand the complexities of the disease, openly expressing their prior ignorance. They have offered their condolences. And they have done so in a heartfelt way that has felt more genuine and kind than I have experienced with many others I know well. One seemed genuinely distressed at my situation, professing his sympathies over and over on the short ride. These drivers have had a better bedside manner than many doctors I have seen, leaving me with a
smile and a warm feeling as I climb slowly out of their cars.
Talking about illness can be hard. It can feel as though you are defending your sickness, your disability, your inability to work. You can feel after an in-depth conversation that the other person still doesn’t get it, and the thing is, you have to accept they never will. As hard as someone tries, they will never fully appreciate what you are going through, and that’s OK. But my Uber drivers have tried. Complete strangers, they have listened to me without judgment, and they have cared. Say what you will about the sharing economy, but its sharing element has shined through for me.
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Image via Facebook – Uber