"But You Look So Good?"
"You must be feeling better, your color is amazing!"
"You're sick, but you seem so active?"
All of the above quotes and many more are the hallmarks of living with an invisible illness. There is an overwhelming misconception in modern society that illness functions like a social media profile, clearly defined by your appearance and the very small snippet of your daily life that rest of the world is exposed to. This however is entirely inaccurate and damaging when applied in real life.
One of the most common grievances of the invisibly ill is constantly having to prove that you're sick, due to other's false perception of what that "should" look like. The idea of what it means to be chronically ill is far too often associated with stereotypes and based off of shallow observations, not real information.
It is viewed that if you are not visibly handicapped or outwardly showing signs of illness that you don't count as being sick and could not be possibly be disabled by said illness. Ageism is also a frequent point of ignorance for the invisibly ill. Youth is perceived as a sign of strength and good health, but is based entirely on your appearance.
An example of this in my life is when grocery shopping. Whenever I have a lot of items the cashier frequently overloads my bags causing them to be painfully heavy. This action is usually followed by the statement "You can handle heavy bags, right? You're young and strong!". In actually I'm quite sick and my youthful appearance hides a broken body- so much assumed simply based off of how I look.
It is incredibly disheartening to have all of daily struggles and pain overlooked and boiled down to nothing by a complete stranger. Age however is not as big factor as perceived good health.
Modern society is extremely short-sighted about what it means to be sick. We get it when someone has the flu, has a broken bone, is visibly going through chemotherapy or requires a movement aide like a cane, walker or wheelchair. What is not easily accepted is when you cannot tell a person is suffering from a chronic illness or disease by appearance alone. Accusations of attention-seeking and exaggeration are common. To make such assumptions about a person you don't know is unfair and condescending.
Just as appearance does not define how sick a person is neither does activity level. There are many factors, despite illness, that can lead to a person being unable to cease their day to day activities. For some it's parenting, being a caretaker for an elderly relative or being the breadwinner of the house, to name a few.
In my own life this is rendered impossible by our living situation. My spouse and I live alone and are without a vehicle. Transportation, public or otherwise, is not available 24/7 and doesn't go everywhere we need to go. The nearest grocery store is a 15 minute walk in optimum weather (below 70 degrees). All household chores are entirely on us to get done as well. We have no one to aide us with this, while also both being chronically ill.
To base the severity of our illnesses solely on appearance and how we conduct ourselves would be extremely presumptuous and offensive, especially when such activities come with a heavy price-tag.
What the casual observer doesn't see is the amount of pain that occurs or the days afterward spent getting worse from doing things they take for granted. I affectionately refer to this phenomena as "Cashing an activity check when your energy bank has insufficient funds.". Just as in real banking this leads to an overdraft and can get you into big trouble. For some it's not a choice but to play this stressful game of debt and repeat, and if you don't know someone personally you won't ever see any of this. Think before you judge, whether a person is a stranger or family, it shouldn't matter!
This is not to say that the chronically ill don't want compliments on how we look or expect you to ask everyone "Are you sick?" before you pack our groceries. What we are asking is that you not make assumptions about our capabilities without knowing us and not to judge us based off those assumptions if we inform you of our situation or ask you for help.
Conversely while the chronically ill don't want to be overlooked based on your perception of the severity of our health issues, we also don't want the entirety of our lives defined by them once you do know. Our health status does not need to be the topic of every conversation and is not our only interest or daily focus.
We don't want or expect sympathy or pity every time the topic is brought up either. We are people who are sick, not an illness first and a human being second.
We live with our illnesses everyday and are well aware of our limitations and struggles. We don't require you to explain to us how our illness works- we already know.
We don't want special treatment, we just want to be treated like everyone else. A little bit of respect goes a long way!
Written by Kenneth Mercure
Founder/Director, Lyme Alliance of the Berkshires
Founder/Director, Lyme Alliance of the Berkshires