Imagining the Perfect World for People with Chronic Illness
Living with a chronic illness often feels like managing a war between my body and the world around me — a world that was simply not built for the chronically ill. There are expectations and norms that can be hard to meet in a chronically ill body. But what if the world was set up differently? What if there was a perfect world built for people with chronic illness or pain? I decided to imagine what that would be like.
(Disclaimer: A truly perfect world would be built for people with all types of disabilities, not just those with chronic illness. I hope the world becomes fully accessible, but this list focuses on an imaginary perfect world that would accommodate my personal experience.)
It would be normal to sleep whenever, wherever
Chronic illness often entails chronic fatigue and other causes of constant exhaustion. This does not align with the world’s expectation that we sleep a perfect 8 hours every night and have full energy all day. In a perfect world, there would be no norms around sleep. Sleeping from 10pm-6am would be fine, but 4am-12pm or 1pm-1am or 2-hour intervals throughout the day would be acceptable, too. Taking naps would be the norm. People with chronic illnesses could listen to our body’s need for rest, instead of fighting against it.
There would be no lines or unnecessary waiting
In a perfect world, everywhere (think: grocery stores, schools, airports) would be line-free. Instead, virtual queues would be offered — allowing people to hold a place in line without being physically present. Waiting rooms would be non-existent, as appointments would be streamlined to eliminate any waiting. In any cases where waiting is necessary, chairs, mobility aids, and bathrooms would be available for all to use. This would remove a major barrier that chronically ill people face (and would probably improve the lives of others, too).
Public places would have areas available for resting
Currently, there are public restrooms, public telephones, and public transportation, yet no public resting areas. Rather than chronically ill people having to leave public places abruptly to rest, rooms to lie down in would be commonplace. This would allow chronically ill people to access public services more easily while taking the breaks our bodies need.
All appointments could be held virtually
Traveling to and from appointments is often a huge challenge for chronically ill people. Luckily, virtual appointments have become widely offered thanks to COVID-19. In a perfect world, virtual appointments (when physical exams or procedures are not required) would always be an option, pandemic or not. This would eliminate unnecessary exertion.
There would be no shame surrounding illness management
Including medication and marijuana.
Many people with chronic illnesses, like myself, have felt embarrassed pulling out a pill bottle at one time or another. That’s because there is stigma surrounding medication, as well as alternative methods of illness management like marijuana. In a perfect world, everyone would be educated and open-minded when it comes to this. Chronically ill people would never have to feel ashamed using or talking about their illness management.
It would be common knowledge that anyone can have chronic illnesses and pain
Even the young and healthy-looking.
In a perfect world, everyone would be less judgmental, of course. This would apply to perceptions of chronic illness. All chronic illnesses would be taken seriously, regardless of how the chronically ill person appears on the outside. Everyone, from teachers to managers to medical professionals, would be educated on the wide range of chronic illnesses that exist and would work toward accommodating them.
If the world was set up like this, I believe it would be better for people with chronic pain, but also people with other types of disabilities or injuries and able-bodied people, too. It all comes down to designing the world to fit all needs and removing social expectations that rarely serve a real purpose, other than to complicate the lives of the chronically ill.
We know the painful experience of living with AxSpA. Will you help others understand by taking our survey?