“It must be nice to get such a long holiday!”
The cheerful sentence stopped me dead in my tracks. I had one of those moments where your brain is so busy trying to figure out what just happened that time seems to stop.
The reason the world ground to a screeching halt was because the comment came mere moments after I had explained that I would be off work for at least eight weeks due to an open total hysterectomy, the removal of my last ovary, and cancer staging surgery for my second ovarian tumor, which had developed within 12 weeks of my finishing chemotherapy.
Emotions had been running high for several weeks since the tumor had been found, so it was a surprise even to me when I managed to actually think before I responded.
I found myself thinking, “What do I need to communicate to have this situation properly understood?” which, seeing as I don’t usually have much of a filter between my brain and mouth, was actually a pretty impressive accomplishment.
I settled for, “This is not a holiday. I will be having major surgery, which is going to have a difficult recovery.”
My self-congratulations at a reasonable response was interrupted by a reply: “But it will be nice to have some time off to have fun and relax.”
OK. That didn’t work. Maybe if I clarify the situation?
“Actually, surgery and recovery isn’t fun, and I find it quite stressful… I will be in bed because I will literally be unable to walk after being cut from my pelvic bone to above my belly button, having organs removed, and taking biopsies of everything from my pelvis to my diaphragm.”
I felt what’s known amongst my friends as “that look” creep onto my face, and I abandoned the conversation, figuring it was a lost cause.
But instead of being infuriating, the experience was quite liberating.
After years of invisible, misunderstood chronic illnesses. After years of thinking it was my fault for not being able to properly articulate what illness was like or that if only I had a “higher profile” disease people might understand… all of a sudden it was made clear that the problem wasn’t with myself or my illnesses. The problem laid squarely at the feet of people who did not want to understand.
I have found time and time again that there is a burden of explanation, rather than a burden of understanding. Despite being the disadvantaged party, wracked with fatigue, it is expected that I explain my illness well enough that it can be understood.
But at a certain point that burden must shift. After a clear explanation, it is no longer reasonable for a person to ignore their burden of understanding.
At a certain point, we must very clearly say, “Your lack of understanding is not good enough. You need to do better.”
After all, there’s only so often I can explain.
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Thinkstock image by odla3D
Lizzie Spencer is a freelance writer who needed a day job and ended up finding her passion working with children. Since being diagnosed with her first chronic illness at 13, Lizzie’s diagnosis list has continued to grow, which helped her to develop an career focus of supporting children living with illness and disabilities.
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