I Am Not 'Brave' or 'Strong' for Working Despite My Chronic Illness


During high school, I worked two jobs, participated in three after-school organizations, worked as a co-manager of the swim team and held a supporting role in the spring musical while maintaining a 3.7 GPA. I have always overworked myself, and I have always been proud of how thin I am stretched. Even more than that, I have always been commended for my dedication, my strength and my work ethic. Even as a child, my self-sacrifice was seen as an accomplishment.

Now, I am in college, taking 21-credit semesters to finish my two bachelor’s degrees by spring of 2018 and working three part-time jobs while keeping a 3.98 GPA. Add to that my fibromyalgia diagnosis, and my tendency toward self-sacrifice in the name of success has been challenged more than once.

 

To be clear: I am not writing all of this out of arrogance; I don’t want to brag about how driven I am or to tell you an underdog victory story of how I overcame my condition. I am writing this because the truth is that I have not overcome anything, I am not special or different from any other person with fibromyalgia and I don’t want to be used as an example of what sickness should look like from the outside so that other, healthier people feel more comfortable.

A lesson I have learned over the past year of experiencing chronic pain is that I am incredibly fortunate. I can get out of bed in the morning. I can get dressed without assistance. I can go to work, walk across campus between classes, come home and cook dinner, do homework and yoga, go to sleep and then wake up and do it all again. My physical condition allows me these small but crucial victories.

Still, I am not every person who has fibromyalgia; I am not every person who experiences chronic pain. Beyond that, I have made the mistake my entire life of sacrificing my health for a socially constructed and unattainable fantasy of success, and to expect that of anyone else is not only unfair to their individual experience, it is also dangerous to their physical well-being.

Very recently, someone close to me learned that he has three bulging discs in his spine, along with arthritis and spinal stenosis. He works a tough manual labor job, and he has spent his life straining his body to keep up with it. He will find out next week whether or not they will have to operate on his spine.

Despite his obviously painful condition, he continues to work, numbing his symptoms with Vicodin he has not been prescribed. He sees himself as strong, dedicated, impressive. When he learns of other people with similar conditions who have gone on disability, he mocks them and uses himself as an example of what his condition looks like when you know how to work hard, when you’re not a “crybaby,” when you’re more like him. Every day, he puts himself at further risk of permanent nerve damage, paralysis and even death. He does this to prove his worth, and he expects everyone else to stop whining and do what he does because otherwise, they have no right to their pain.

Obviously, this is not the solution. But that doesn’t mean you won’t hear a hundred different people tell you all the ways you can do a better job living with your condition based on their shining, golden example of what illness should look like. They will tell you it is brave that a young child with a fatal disease does homework from her hospital bed, knowing she might not live long enough to see it graded. They will tell you it is noble when a father who has stage four colon cancer continues working his factory job to support his family. They will tell you it is good and it is right and it is fair for sick people to sacrifice themselves so they can meet standards that healthy people have set for them, standards that healthy people are also held to.

The world we live in will try to keep you from realizing it, but this is not the truth. We have to stop glorifying self-sacrifice as strength and dismissing self-care as weakness, and we need to stop letting healthy people assuage their own guilt by assigning a gold star to the sick people who make them feel like they are on a level playing field.

It is important to remember that some people are in more pain than others, and everyone manages pain differently. Being unable to work does not imply cowardice, and staying at work despite your body telling you not to does not imply valor. And the constant implication that we should all just grin and bear it because it has been proven possible by someone else does nothing but further discourage and demean those people who are (rightfully) struggling just to make it through the day.

There are single mothers of four whose pain staples them to the bed in the morning and who still manage to get up and feed their children, send them off to school and take care of them when they come home. There are young women debilitated by fibromyalgia pain, forced to use a cane at 20 years old just to walk through the grocery store, who have tried everything the doctors have told them to and still have to put themselves through excruciating pain just to buy a gallon of milk. There are young men whose skin is set on fire by the t-shirt they hang off their shoulders, whose cognitive function is so degraded by fibromyalgia they cannot focus on the road well enough to drive a car, whose vertigo is so bad they can’t sit up straight. But they buy their girlfriends flowers on Valentine’s Day, they go for walks every night despite not having the strength to, they try and try to get better, to be better, they fail, and then they try again.

And those single mothers, those young men and women might also be on disability and unable to work.

You tell me: Am I braver, stronger than those people just because I can sit in an office chair for eight hours? Are you?

I refuse to be used as an example of what a “good” person with fibromyalgia looks like because I know that being able to do certain things despite my pain does not make me healthier than anyone else with fibromyalgia, and it certainly does not make me stronger or braver or a better person.

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Thinkstock photo via Andesign101.


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