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But You Don't Look Sick

Have you ever been criticized for cancer-related accommodations because you look better than you feel?
BY Mindy Waizer
PUBLISHED November 20, 2017
A few weeks ago, Lexi Baskin, a student at the University of Kentucky, came out of a meeting with her professor to find her car plastered with printed signs intended to shame her for parking in a handicapped spot. The signs proclaimed her “not really handicapped, just lazy,” and accused her of being a selfish, terrible person.

Lexi, who is undergoing radiation after surgery for a tumor on her brain stem, was legally parked in the spot, her car displaying the appropriate handicapped tags in the window. But because she doesn’t look sick, someone assumed she was using the parking spot fraudulently. Lexi told reporters at WLEX that she gets fatigued and sometimes dizzy from radiation treatments, which she fits in in between classes. These invisible symptoms are why doctors gave her the handicapped placard.

Lexi took to Twitter, sharing images of her car along with the words, “Reminder that you have no idea what's going on in people's lives. I have cancer and radiation treatment. I'm legally allowed to park here.”
  While she expected only friends and family to see her tweet, her story went viral. More than 100,000 people read it. Tens of thousands retweeted it, and thousands more commented. The university issued a statement denouncing the anonymous critic’s actions. Her story touched a nerve among people in the cancer community, as well as among those who have “invisible” illnesses.

How common is Lexi’s experience? Too common. CURE magazine shared Lexi’s story (as reported by FOX News) on Facebook, and asked readers: “Have you ever been criticized for cancer-related accommodations because you look better than you feel?”

Readers’ responses were overwhelmingly affirmative. One reader, Holly Niwre, responded: “Recently had a woman approach my car and take a picture of me sitting in it as I was getting ready to leave. I've been stage 4 for five years, bone and liver Mets (metastases). Some days are better than others.”

Another reader, Mallory Jean, wrote: “I was 25, in the middle of chemo for stage 4 kidney cancer. Grocery shopping was horrible because I would throw up at the end of each aisle. So I used the motorized scooters. But since I was young, a healthy weight and looked fine, people were upset I used it and thought I was playing around.”

Some readers in treatment for cancer expressed frustration with the catch-22, they work hard to look good, and to prevent their treatments from affecting the way they present themselves to the world. However, those who don’t know them assume they are fine, when in fact they are suffering.

Rhonda Blender wrote: “I may have had colon cancer, major surgery and running to the bathroom all the time which exhausted me but everyone kept telling me how great I looked. Maybe they meant well but I felt it was diminishing how much I was struggling with at the time.”

Karen Tucker agreed. “We try to look our best then get told how easy the treatments are,” she wrote. “The lesson should be to mind your own business and be grateful not judgmental.”

How do CURE readers deal with people who make assumptions when they shouldn’t?

Nancy Mueller wrote, “When someone is rude and says, ‘You don’t look handicapped,’ I reply, ‘You don’t look stupid.’ But if the person is polite when s/he says, ‘You don’t look handicapped,’ I thank them and tell them I work very hard to look normal and I appreciate the compliment.”

Lindsay Baskin told WLEX that she hopes the person who put the signs on her car will “be more open-minded in the future.” CURE readers would like others to take this lesson to heart as well.

As LaFaun Reed Kahn put it, “If there is a handicapped tag in or on the car, people need to mind their own business. Until you've walked a mile in someone else's shoes you have no idea what they are going through.”
Continue the conversation on CURE’s forum. >>
Talk about this article with other patients, caregivers, and advocates in the General Discussions CURE discussion group.

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