What A World Built For Lupus Patients Would Look Like
As a sick person in a world built for the healthy and able-bodied, I’ve often struggled to keep up with my peers who do not live with lupus.
A world built for people with lupus
Occasionally, though, I’ve wondered what would happen if the tables were turned. What if, instead of my having to live in a world built for healthy people, everyone else had to live in a world built for people like me? Here’s my take on what the world might look like if it was built for people with lupus:
If the world was full of sick people, 40-hour workweeks would be deemed cruel and excessive. Congress would abolish the work week as we know it immediately (or at least as soon as we’re all able to get out of bed). A flexible work environment would become the norm, with employees working remotely or showing up for shorter shifts. A 4-hour shift would replace the typical 8-hour workday. Employers would be required by law to provide coffee, reclining chairs, and optional nap breaks. Rather than boasting about how many hours they spend at work, employees will value health and a good night’s sleepover sacrifice and workaholism. Work-related phone calls before 11 am would be punished by a $1,000 fine payable to the receiver of the call. Workplace dress codes would be expanded to include pajamas.
Flying couches would replace all other models of transportation, with the option to upgrade to a bed/hovercraft. Subways would become obsolete due to their substandard handicapped access, loud noises, and potential for the spreadsheet of germs.
Education on disability and illness for all
Disability and invisible illness sensitivity training would become a mandatory part of a high school curriculum. PSAs would educate the public on the harmful impact of phrases like “You don’t look sick” and “Everyone gets tired sometimes.” Employees who fail to exhibit sufficient understanding of their coworkers’ health conditions will need to enroll in a Chronic Fatigue Simulation Course, in which they will be required to stay awake for 48 consecutive hours with no breaks or caffeine.
Doctors will be banned from uttering the words “are you sure,” “let’s wait and see,” and “it’s never lupus.” Doctors who violate this protocol shall be required to forever wear a red letter “J” for jerks pinned to their lab coats. Competent, caring, and empathetic doctors will be granted a limitless supply of free hugs.
In a world built for sick people, deadlines will become a quaint relic of an ancient society. Shoppers will be able to return clothing with tags still attached many years after the date of purchase, with “I couldn’t get out of bed” and “steroids made me cranky” serving as sufficient alibis. A national holiday and day off of work will be scheduled twice a month in order to allow sick people to take care of bills and banking needs.
Traditional grocery stores will be replaced by a conveyor belt model in which shoppers relax on couches while groceries slide past on conveyor belts. Complimentary coffee will be served, as is required by law in all public places.
A device resembling Neville Longbottom’s remembrall will be invented and provided free of charge to all citizens. A backup device will be available for sick people who have lost their remembralls.
Fashionistas will all wear germ masks in a variety of pastels and jewel tones. Hand sanitizer will become the hot new accessory.
Patients sporting a steroid moon face can visit their local Sephora or Ulta for a complimentary makeover and contouring tutorial. However, body-positive advocates will encourage women to embrace their natural beauty; models will glide down runways in wheelchairs with barely-there hair and puffy cheeks.
Advocating for a better world
Perhaps it’s crazy to imagine a world built entirely for lupus patients. But perhaps it only sounds crazy because it’s so different than the world we live in. Before the Americans With Disabilities Act, a world built for disabled Americans was unimaginable. While flying couches might never be invented, there are many disability advocates out there fighting for a better, more accessible world.
Did you have the Epstein-Barr virus (EBV) or Mononucleosis (mono) before learning about your lupus diagnosis?