Note: I use able-bodied and healthy interchangeably as well as chronically ill and disabled interchangeably, but there are differences.
As humans, we all have limitations. We can only go so long without sleep, rest, food, and water. We can only bear so much psychological stress. To have these limitations is to be human. Just because you have limitations do not be fooled into thinking you understand what it is like to be limited by a chronic condition.
The spoon theory was written by Christine Miserandino to give able bodied people an idea of what it is like to have a chronic illness. Basically, it asserts that living with a chronic illness means that you have only a set amount of spoons. This image might help.
The spoon theory is a handy tool, of course with limitations, but it has helped me explain chronic illness to many people who just weren’t getting it. However, I am seeing a trend of people without physical or psychological conditions talking about their spoons like the theory applies to them. It absolutely does not.
Before and After
I have been severely disabled for the past 8 years, but I have distant memories of what it is like to be mostly healthy. Running out of energy and mental capacity as someone without a chronic condition is not even close to the same as running out of spoons. When healthy people push past being tired there are usually only short term consequences. Healthy people have an amazing capacity to function sleep deprived, work through the day without food, participate in physical activities without much pushback, and deal with psychological stress to a much greater degree.
Healthy, I used to be able to work 2 jobs, dance, take all advanced classes, talk to my boyfriend, eat 3 square meals, cook occasionally, and shower every single day. Every once in awhile I would take on too much, but the consequences weren’t all that bad. Usually, I would just need to sleep a few extra hours or scale back (while remaining active) to get over the cold I got. More often than not, just a day later I was able to go right back to being busy and productive. There were no lasting consequences for me pushing past my limits like there are now.
Now, I commonly have days where I have to choose between cooking, showering, working, or socializing (if I can even do any of these at all). When I do more than I am meant to in one day I sometimes see a decline in my health for weeks. A year and a half ago I tried to go on a short hike without much rest beforehand. Pushing past that limitation, just that one day, is something I still feel every single day after all this time. I injured my ankle by pushing past my limitation and since most foot and ankle specialists don’t know what EDS even is, I am still in pain every single time I walk on it.
When healthy people push through sleep deprivation, worst case scenario is that they get a manageable cold. When disabled people do, they can end up unable to get out of bed for weeks or give them an infection that can land them in the hospital.
When healthy people work throughout the day without food they can become tired or cranky, but usually, everything is fine once they eat again. Not eating as someone with a chronic condition can result in fainting, hospitalization, and not being able to get out of bed for days.
When healthy people push past their physical limitations and walk that extra mile or do that difficult workout they will likely end up getting tired and then sore the next day. When people with disabilities do this they can end up injuring themselves severely, worsen pain so that they cannot function the same for up to months, or get so hurt they end up in the hospital.
To be clear, people with psychological conditions deal with spoons too. The consequences of pushing past these types of limitations can be equally severe as physical conditions and often end up being physical.
I don’t know any healthy people who have to chose just one: showering, working, socializing, cooking, eating, or cleaning on a daily basis because of physical limitations. But that is what it is like to have a chronic condition. To make these decisions, with severe chronic consequences, is to have spoons.
Disability Is Not the Same As Being Able-bodied (Who knew??)
I used to hear all the time to just “push through the pain.” Healthy people think chronically ill people’s limitations and consequences for ignoring those limits are the same as theirs. A lot of what it comes down to is healthy people thinking that chronically ill people’s symptoms are the same as their own.
- Being tired is not the same as fatigue.
- Being sad is not depression.
- Aches and pains are not the same as severe chronic pain.
- Having an infection is not the same when you have a chronic illness.