There is value in knowing what you’re getting into before you get into it. No one wisely enters into a contract – new job, new car, etc. – without first reading the fine print. People are not surprised when, down the road, a rate hike occurs or other unforeseen event happens that was spelled out as a possibility in the original agreement. That is because people – again wise people – carefully read contracts, review them scrupulously, and only sign once they find all terms satisfactorily in their favor. But this applies to material things – houses, cars, loans. This does not apply to chronic illnesses.
Those with chronic illnesses find themselves locked in a contract with non-negotiable terms. Their bodies become subject to intrusive procedures; their humility stripped from them as they sit on a gurney, clothed only in a loosely fastened hospital gown, awaiting results. They find themselves subjected to drug therapies, experiencing possible disturbing – and sometimes irreversible – side effects that disrupt their quality of life. Once people with chronic illnesses
make are forced into these contracts, their lives are never the same.
“Chronic” implies an ongoing permanent to long-term situation. Chronic illnesses do not come with “lease” clauses. One can’t simply send the clunker back after twelve months if they find life unbearable. No. They must create a new normal, reinvent themselves as a person with a chronic illness. In some ways, the illness begins to define them and how people perceive them. With time, they stand subject to prejudices and their identities merge with the disease. They become “that girl/guy with migraines” or “that woman with endometriosis” instead of an accomplished career person, husband or wife, or valuable community member.
There is value in knowing what you are getting into… how a chronic illness can change your life. unfortunately for many chronic illnesses, forewarning is not an option. No chronic illness menu exists where patients can select the one that would best fit in their life, be the least inconvenient. All one can do is strive to not fall into the societal trap – become “that person with X illness”. A person being treated and viewed based on a diagnosis.
It’s this bias people have about the chronically ill that has caused me to conceal my chronic conditions to those who work with me. Or at least I have tried, and when I must reveal, I do so by giving the least responsible amount of information required. I refuse to be viewed among my colleagues as “the sick one” when I can often run circles around the healthiest there. I refuse to have my hand-held, to be coddled, to be treated as a weak link because of an illness I did not choose. I don’t remember signing the contract. I never agreed to it. Don’t treat me like someone who willingly became a “sick person” and needs your comfort and sympathy.
The chronically ill has the responsibility to speak up for ethical treatment in society. It took the disable community years to achieve equal rights – and bias still remains. Chronic illness is a disability. We didn’t choose it or ask for it or even want it. And yet having it disrupts our lives and can limit our opportunities. Please don’t hinder our opportunities, restrict our rights, or treat us as lesser community members because of it.
Equality and fairness, that is all we ask. Why is this so difficult to obtain?