It was fifteen years ago that I joined a clinical trial for a new MS drug. With no cure in sight and no acceptable drugs on the market, my only hope was to be a guinea pig and pray for a miracle.
I was guided through it for nine months by a pleasant young woman. It was an arduous process involving countless blood-takings, infusions and MRIs, as well as motor tests and interviews. We spent a lot of time together. I felt cared for.
One day a new frightening symptom showed up. I told her about it. She smiled and said, “Be grateful you don’t have ALS!”
It was an awkward moment.
She had patients with ALS so she knew what she was talking about—sort of. My first reaction was guilt. How could I complain about living with MS when others were dying from ALS? My second thought was that she didn’t have a clue what she was talking about. How could she understand what I was grateful for, and what I was slowly losing?
That was an unusually quiet moment for me. I’m rarely at a loss for words but the confusion of feeling guilt and anger, gratitude and loss all at the same time just shut me up. Bottom line: in the name of cheering me up, this woman I’d trusted had just made me feel bad about myself.
She was right about being grateful of course. Things can always be worse. To this day however, I think it was a stupid thing to say. No matter how small their suffering, everyone needs validation. I feel horrible for those with ALS. I feel terrible for those whose MS is worse than mine—but I still have to process my feelings; they’re real.
When someone talks about their suffering, the urge to make them feel better can be overwhelming. My guess is she didn’t mean to hurt me, but years later I still feel the sting!
Has this happened to you? How did you respond?